Living the CFS Life

Reverting

2011-10-16T12:35:00.000-07:00

I changed the name of my blog back to "Living the CFS Life." So much for XMRV. At least it has drawn attention -- and research dollars -- to our disease. I am grateful for that.

I realize now why so many of the "old timers" didn't get involved in the uproar of XMRV. They've been through this all before, perhaps many times. The announcement -- THIS IS IT! The euphoria, the soaring hope, leading inevitably to "Oops. We were wrong." I suppose I won't be so easily pulled in next time.

So, I join millions of others, still waiting, waiting, waiting. While I wait, I will do what I can to pace and manage my disease to the best of my ability. I am continuing anti-retroviral treatment because I have seen progress. I'll continue as long as I progress. Who knows why it is working or how. Maybe it's just the fact that I moved out of a two-story house. If I plateau, I'll stop.

Meanwhile, I'll keep doing what I've been doing the past five years now: Trying to embrace the joys of every day, tiny moments.

Applying Venture Philanthropy to Chronic Fatigue Syndrome - Health Blog - WSJ

2011-09-15T10:43:00.000-07:00

Here is some very exciting news for those of us with CFS -- $10 million dollars going towards research! Woohoo! Looks like some people are starting to take notice.

Applying Venture Philanthropy to Chronic Fatigue Syndrome - Health Blog - WSJ

Schooled

2011-08-23T17:26:00.000-07:00

Answer: Christmas, the time change, and back-to-school.
Question: What are "Things That Kick My Butt."

Oh, I mourn the end of summer. I'm one of those moms who enjoys having their kids around. Do you know that I did not hear the words "I'm bored" once? Lazy days spent together, working on a puzzle or lounging in the pool. It was delightful!

Then comes the mad dash to get haircuts, school supplies, and new clothes. Worry keeps me up the night before, and then the dreaded alarm clock rudely demands I wake before my body tells me it's time. Of course, I can't get back to sleep after, either. Disrupted sleep and stress are taking their toll. I'm dragging. My energy window has caved in, and my activity threshold is almost non-existent.

So once again, I must rein in my enthusiasm. Be patient, and nurse my body through these changes. Patience, bah. I've been excited about testing my wings. I want to begin small excursions out of the house. Just half an hour, say to the park or just sitting at the mall, once a week. It looks like that will have to wait a little bit longer. Once again, this disease reminds me who's really in control here.

Patterns

2011-07-31T17:13:00.000-07:00

As I'm trying to navigate the latest changes in my health, I look for patterns that help me manage my time and energy the best I can. So here's what I have figured out right now.

I have an energy window from about 10 am to 7 pm where I feel pretty good. 12 to 3 pm are my very best hours. I try to schedule most of my activities for this magic window of time.

In addition, I'm finding that I have an activity threshold. This is where I'm learning. I can tolerate an activity for a certain period of time. My body is very clear in warning me when I start to cross that threshold. The first thing I notice is that my cognition begins to wane. Next, my eyes begin to twitch, and the more stress, the more I twitch. Finally, if I've really pushed it, then I have muscle weakness and shaking.

My goal these days is to discover my activity threshold. In my excitement over my new-found energy, I have a tendency to try something and ignore my body's signals that I'm overdoing it. Although I bounce back and recuperate faster than I did before, I'm sure that the bouncing back and forth can't be good for me. I can only imagine that staying within my activity threshold would help me heal even faster.

XMRV Treatment: Five Months

2011-07-28T13:41:00.000-07:00

I have been on ARVs (anti-retrovirals) for five months now, and I have experienced no side effects. I continue to see a steady improvement in my health. I would say that I have gone from about 20-25% at my lowest in February to about 35% now.

The greatest improvement has been in the symptom of fatigue. It used to weigh on me like a suit of weights, making every movement and activity feel so much more difficult than normal. The lifting is like the sun breaking through the fog, and it has had a huge impact on my overall mood. It's been better than any anti-depressant I've ever tried.

My pain has been lessening as well. It's hard to tell if my cognition is improving. Sometimes I think it is, but it is the first thing to go when I overdo it.

One challenge I face as I start feeling a little better is which activity to add to my life. There's a whole list of things that I want to do, that I should do, that I once dreamed of doing. I haven't had to prioritize in a long time. Everything was off the table before, and I chose my activities based solely on necessity and urgency.

Suddenly, I have choices in front of me. And each day I seem to choose a different combination based on my whims. One day, I spent a little individual time with each of my kids. One day, I went to a water polo tournament (about two hours). Another, I had friends over to swim. And another, I went to a party at a friends house. See? One or two "big" days a week, and the rest of the time I'm recovering or preparing for it. I'm not sure I'm adjusting to my new healthier me very well.

I feel like I have found the perfect regimen for me. I have the ARVs, which I believe are stopping the disease. I feel like my body is broken, and that the essential oils and supplements that I'm taking are helping to repair it. And I am able to exercise in the pool most days, which I feel is strengthening my body.

I will write a new post soon about the essential oils I'm taking, because I love them. It's the first time that I've found something that helps with my symptoms.

XMRV Treatment: Four Months

2011-06-26T14:01:00.000-07:00

I continue a slow but steady improvement with my health. When I went to my last doctor's appointment, I told him I felt like I was getting better. I said I'm able to tolerate social visits better, and that I was more mobile around the house. He said that was nice, but he was hoping I'd be able to give him something a little more quantifiable.

Well, here's a quantifiable improvement for you: I lost a couple of pounds! I haven't changed my eating habits. It's been due to an increase in activity.

I have been taking advantage of having a pool in my backyard. I try to go in every day, now that the weather is so hot. I'm sure that being out in the sun and getting a nice Vitamin D fix is helpful. I am gentle in the water. I walk the width of the pool a few times, and I float on my back. I can feel the muscles in my body stretching in new ways. It feels heavenly. I do a couple, just a few, water calisthenics. And on a good day, I'll take a few strokes across the pool. Seriously, three strokes will get me to the other side. Again, it's movement in a new way, and I'm always careful to not get my heart rate racing.

The daily exercise has been helpful for my sleep, too. I've been getting a good nine hours a night. I feel more energetic during the day, less dragging. I still rest twice a day, but I have to force myself to stay down at least 20 minutes in the morning and half an hour in the afternoon. Rarely am I tired enough to rest a full hour.

I also feel like my immune system is strengthening, just a little bit. This is kind of scary. I know I've had infections floating around my body undetected for some time; now, my body is starting to fight back, so I'm getting more "sick" symptoms like mucus and fever. I tell myself this is a good thing, and for proof, I have more energy than I did before my "sick" symptoms.

I'm still not venturing out of my house much. With summer vacation, there aren't too many reasons to. I content myself with enjoying the improvements on this level without worrying about kicking it up a notch just yet.

I'm enjoying my essential oils. I feel like they are helpful, especially with immune support and orthostatic intolerance support. Who knows for sure, right? The digestive aid is definitely helping, though. I really like the new supplements I'm using, too. I feel like they help me bounce back from overexertion better than I had before.

Meanwhile, the controversy over XMRV continues. Personally, I am waiting for the Lipkin study that should be out by the end of the year. I feel that if WPI has made a mistake, he'll be able to explain how instead of just saying, "Well, I couldn't find XMRV using my fast, cheap methods, so it must not exist." WPI continues to be confident that true replication studies will support their findings. In the meantime, I'm taking ARV treatment, and I'm getting better. That's enough for now.

Note to Self: Stupidity Causes Setbacks

2011-06-05T10:49:00.000-07:00

Well, I did it. I pushed too hard too soon. I attempted a visit with my sister that required an hour and a half drive each way. I rested once while I was there, but it wasn't enough to undo the damage. I crashed hard, and I haven't been able to get back to that blissful feeling I had been enjoying while on the meds. It's been three weeks, and recovery is slow.

I haven't fallen all the way back to square one. I'm still better off than I had been over the holidays and with the move. It's just that feeling improvement and then having it slip from my fingers is frustrating. I know what it feels like now. I want it. I hunger for it. I stamp my feet and shake my fists when I can't have it.

I have started using essential oils as a supplemental therapy for treating symptoms. Lavender helps a little bit with sleep. I'm going to be adding marjoram this week. It's supposed to have a sedative effect. I'm hoping that between the two of them, I'll be able to stop taking the over-the-counter sleep aid I've been using. I use a digestion blend for stomach problems, and it works fantastic. I've also been taking oregano to fight infections, and an immune-boosting blend. I have a pain relieving blend that works pretty well if I remember to use it at night. I wake up with much less achiness. I've started using cypress for circulation and the jury's still out on that one. And I've been diffusing citrus oils, wild orange or a blend, which helps disinfect the home and smells delightful. Citrus is supposed to relieve anxiety and have anti-depressive qualities.

I don't know if all the oils will work, but like I told my sister-in-law, at least they smell good. :)

I'm going to switch to a new brand of supplements next week. It's a complete system of vitamins, minerals, fish oil, and antioxidants. They claim that it should help with mitochondrial production, inflammation, oxidation, and glutathione production. All stuff that is helpful for CFS. They also claim that you're supposed to be able to feel the difference pretty quickly. If that's true, I'll share the brand name with you all. If it's not true, I won't bother. I'm hoping that it may help me rebound from my relapse a little faster. Help me get back to my state of nirvana. (OK, I'm exaggerating, but comparatively speaking, that's what it feels like!)

Friday was the last day of school, and we had a few friends over for a casual pool day. Everyone had a good time, but of course, I paid for it afterward. I'm looking forward to the day when I can enjoy these activities without fear. I'm excited that we're moving into summer, because it's a much more relaxed time for me. I enjoy having my kids home.

Hugs to those of you who are not doing well right now. You are in my thoughts and prayers. I hope the sunshine of the season brings healing to you.

Smelly Politics

2011-06-03T10:27:00.000-07:00

I have been closely following the news regarding various negative XMRV studies and the responses from WPI. I have yet to see a study that truly challenges Dr. Mitkovitz' findings or replicates her study. I have heard of some interesting and plausible conspiracy theories. It's all about money, greed, and power, and we, the sufferers of CFS, are being trampled under their feet.

There are several studies underway that should shed light on the subject one way or the other. But Science magazine wants to undercut all that and jump to an early and ridiculous conclusion by requesting that Dr. Mitkovitz retract her paper. It is unconscionable. I have to wonder why they would do this now. We've been told for almost two years now to let the science work it out. Why aren't they willing to let the science work it out?

I encourage you to sign this petition that tells Science to retract their EEC. http://www.change.org/petitions/an-open-letter-to-the-editors-of-science-2

Improvements

2011-05-03T20:08:00.000-07:00

After 2 1/2 months of XMRV treatment, I definitely feel better. My need for rest has diminished quite a bit. I still force myself to lie down twice a day, but I'm often antsy and peeking at the clock around the 20-minute marker. I am sleeping less. I don't seem to require 10 hours of sleep in order to feel good. Often, I will wake at 6 am after 7-8 hours sleep, and I'll be unable to doze again.

I feel uplifted, happy, almost exhilarated. I find myself smiling a lot more. It's like a weight, a fog has lifted from me.

I still have to be careful with activity. I shopped WalMart the week before Easter. It was way too big an outing for me; I should have started with something small, like a trip to the corner grocery store. But I find that I'm chomping at the bit, eager to push the envelope just a little bit to see what happens. Did I crash? Um, yes, yes I did. It was a big one, but it only lasted one day. A crash like that would have normally taken me at least a week to recover from, if I indeed ever fully recovered.

I'm doing more around the house. Not that much more, but noticeably. It's interesting how I had unconsciously been conserving energy, calculating the most energy-efficient way to do anything. I watched my husband put on his shoes one morning. He picked one up, untied it, set it down, did the same with the other shoe. Then he picked up the first shoe, put it on, and put on the other shoe. I was amazed that he didn't realize that he was wasting so much energy by putting the shoe down and picking it up again. I never would have done that! Likewise, I always made a beeline for the nearest chair whenever I entered the room. If the phone rang, I'd wait until one of the children handed it to me.

Yet, twice this week -- twice! -- I found myself pacing while talking on the phone.

The other thing that I've noticed is that I am tolerating social interactions much better. I've been out to dinner with my husband twice without any negative repercussions. My sister-in-law dropped by and stayed a couple of hours. I was exhausted, but it didn't cause a crash. I can handle a drop-in visitor for about an hour now. Talking on the phone is still challenging; I'm good for about 45 minutes of that.

Meanwhile, I'm enjoying creative pursuits with my writing, and I've started using essential oils for symptom relief. I haven't been using them long enough to report anything, but so far I've found a couple that seem promising for pain and stomach problems.

Happy Mother's Day to all you Moms out there!

XMRV Treatment: Month Two

2011-04-16T10:37:00.000-07:00

So sorry I haven't posted lately. I've been occupied by my writing (imagine that, focusing on real life and not my illness). In particular, I've been participating in the A to Z blog challenge for the month of April on my writing blog. It's been a lot of fun, but I find that it takes a lot out of me.

After two months of treatment, I asked my husband if he could see any differences at all. He said there are hints. I agree.

I notice that I am having more good days. By good days, I mean that I feel lighter, happier, in a good mood, like a fog has lifted from me. I have a little more energy, and I tend to do a little bit more spontaneously -- things like wash my sink, clear the table, empty another box (still haven't finished unpacking!). It's not a big difference in my activity level, but it's definitely noticeable.

Unfortunately, that buzz of energy also keeps me up at night. I have a hard time falling asleep, and when I do, it is filled with vivid dreams and wakings. Which leaves me exhausted the next day, and it takes several days to normalize again. It's a cruel cycle.

Another thing that I've noticed is how horribly deconditioned I am after years of declining activity. I can't help but feel that if I were in better shape, I'd be able to take advantage of my good days and do more with them. It's a nasty catch-22. If I push my activity level, I feel tired and crappy. If I don't, I can't make any progress in my health.

I've chosen to push myself a little bit. I am doing gentle yoga in the mornings. I've bought a pedometer. I walk an average of merely 1,000 steps a day. Before I got sick, it was around 8,000. I try to walk just a little extra. I'd like to get it up to an average of 2,000 steps a day. For now, anything over 1,000 is a victory.

Many people have asked me what specific medications I am taking. I don't feel like I can give that information right now. It would be irresponsible. I don't want to appear that I'm recommending this course of treatment for anyone. I don't know if it works, and even if it does, I can't assume it will be right for everyone. If you are as determined as I was that you would like to try antiretroviral treatment, then I recommend you do your homework, find which drugs target XMRV, and decide with your doctor which treatment is best for you.

XMRV Treatment: One Month

2011-03-19T10:39:00.000-07:00

Stupid Daylight Savings Time. I was all set to write this wonderful, optimistic post about how good I'd been feeling lately, then WHAMO! DST + monthly hormonal revolt = crash and feeling crappy.

Prior to the crash, I noticed several very good days. And I mean VERY good. There were days where I woke up refreshed and smiling. I do not often wake up refreshed, and I almost never wake up smiling. Although my functionality didn't seem dramatically improved, I felt like I was improving.

With CFS, I am aware of the energy cost of every movement. I notice the effort it takes to raise my hands to wash my hair. I notice the effort of standing while getting dressed during the day. I notice the effort to write a journal page. I notice the effort of talking on the phone for 10 minutes to my husband. CFS is like a heavy fog that settles into my bones, and I am aware of it all the time.

But during those good days, it was like a lifting of the fog, or maybe more like a lightening. Instead of feeling like I was walking through sand, it felt like I was walking through glue. Yes, everything was still an effort, but so much less of an effort than it had been. I felt lighter, like gravity had lessened its pull on me. It was wonderful! And I was ready to declare yes, I am getting better!

And then we had the good ol' time change switcheroo, and a whole week has gone by with no good days. My sleep is back to being disrupted and unrefreshing. My schedule is all messed up, and my internal clock is not adjusting as quickly as I'd like. I'm staying up too late because I'm just not sleepy yet, dang it! And then I'm sleeping 10 hours and still waking up sluggish. Like I mentioned, my monthly period always exacerbates my symptoms, and having it coincide exactly with the time change has been a double whammy.

I'm hoping this week brings improvement, that my body will adjust to the time change and let me sleep well once again. I'm hoping I'm able to coax a few good days back.

Other things I've noticed: I don't have any side effects with the medication at all. I'm tolerating social visits much better than before. And I've been adding spontaneous little tasks to my day, things like washing the sink or unpacking a box. So maybe my functionality is improving a tiny bit.

Hopeful Signs

2011-03-02T09:48:00.000-08:00

Two things:

Yesterday I felt good -- all day long.

And today, I definitely notice less pain.

:)

Follow Up Doctor's Visit

2011-02-24T13:58:00.000-08:00

I met with my doctor yesterday, and I have to say, it went swimmingly! My labs show no toxicity, and he said we would have seen something already if there were a problem. I am tolerating the meds very well. He asked if I have noticed any changes yet. I told him that I have moments where I feel very good, but they evaporate pretty quickly. Before, I would have a very distinct energy envelope between mid-morning and early evening where I felt fairly good as long as I kept within my restrictions. This is different and unpredictable.

He said he noticed that I got up on the exam table easier than I did at my first visit. I was impressed that he had not only noticed but remembered. So often, you feel like a blank face on an assembly line, and you wonder if the doctor even looks up from your chart. I think he is becoming more and more interested and excited in our little experiment.

I can't say that my capacity for activity has necessarily increased, although I did spend almost two hours on my writing project the other day. I got rather caught up in my story and didn't even notice the time. I was pretty wiped out afterward, not surprisingly. But no crash the next day. I don't know, there may be some minute improvement, but it isn't big enough to quantify yet.

The doctor renewed my prescription and gave me two refills. I don't have to return for three months. By then, I should definitely know if the meds are helping at all. If not, I stop treatment. If so, we continue. Fair enough, right?

My mantra these days is "We'll see, we'll see."

ME CFS XMRV Expert Dr Paul Cheney - Hits Back on 'GET' Graded Exercise t...

2011-02-21T11:12:00.000-08:00

Dr. Paul Cheney talks about the dangers of using Graded Exercise Therapy in ME/CFS patients.

Week 1: Worse Before Better

2011-02-19T11:55:00.000-08:00

I have been taking XMRV treatment for one week now. I expected to feel worse before I felt better, and I think that is true. However, it is more of a dip than a plunge. I take the pill at night, and it does make me feel sleepy. Now, for those of you familiar with CFS sleep disturbances, you know that this is actually a good thing! I find I am able to drift off to sleep much quicker than usual, and I"m sleeping more deeply than I have in the past. However, I'm sleeping longer than I had been by about an hour, and I am slow to get going in the morning.

My energy levels have become unpredictable. I was used to a reliable "energy window" that would last from mid-morning to early evening most days (unless I overdid it). Now, I'm finding my energy in bursts. I'm sluggish; then I suddenly feel pretty good; then my energy abruptly disappears, only to come back again a little later in the day. I'm riding it out. I am careful to not overdo it when the energy is there, but to pace myself as usual. When I feel deflated, I rest. I've been spending more time in my bed than I usually do, not necessarily crashed or even officially resting, but just kicking back.

I'm not getting much done these days; there are still boxes waiting to be unpacked, but those will wait. On the flipside, my household is not descending into complete disarray. I'm still able to do minimal activities like laundry and nagging the kids. I haven't felt the need to call for additional help, like I was afraid I might have to.

I haven't exercised since the move, for obvious reasons. No stretching, no yoga. I think I'll try to ease back into the yoga. See how well I tolerate it. I hope I do OK, because it helps so much with pain management.

Ha, once again, all I can say is we'll see, we'll see.

XMRV Treatment: First Impressions

2011-02-15T11:31:00.000-08:00

So, it's been three days since I began XMRV treatment, and so far... well, not much, really. My throat is a bit more sore than usual, and I feel a bit more achy, especially in my upper arms, neck, and hips. Is that the "inflammation" that people talk about? Also, I feel a little more sleepy than usual.

I don't seem to be having any negative reaction getting on the medication. I haven't noticed any side effects related to it, like nausea, diarrhea, or insomnia. The other effects could very well simply be because I've been doing a lot of push/crash for the last month. First the move, and then my birthday was on the 10th, and I broke a lot of rules that whole weekend. I crashed on Sunday, but I felt pretty good yesterday. I had that little bit of energy that makes me wander around the house picking up things. Good times.

I've been asked what kind of medication I'm taking, and what dosage, but I don't think it's a good idea to mention specifics at this point. I'd like to wait and see what kind of results I get before first.

I will, however, mention the supplements that I'm taking that I'm hoping will improve my chances of success or extend any gains I might make.

Currently, I take Trader Joe's multivitamin, vitamin D, probiotics, fish oil capsules, denatured whey protein for glutathione, d-ribose x3 daily, melatonin, and generic acetaminophen PM. I just ordered some sublingual B12 tabs and l-methylfolate, for methylation.

Hm, other than that -- I had a lovely Valentine's Day! The kids helped make our special breakfast for dinner, and my husband treated me to See's candies. I hope you all had a wonderful day, too!

It's Here!

2011-02-12T20:04:00.000-08:00

The new medication finally arrived today...and I panicked! After all my determination and tenacity, the moment of truth has arrived. I am not ignorant of the risks involved. And I find myself asking, Am I really that bad? Do I really want to do this?

I mean, I've adjusted to my situation. I've got so much help. And things are better here; without the stairs, I'm finding that I'm bouncing back much more quickly. Of course, "back" means just getting out of bed and able to take a shower. I'm still housebound. I still can't get out and visit with friends. I still can't go to church.

It's time. It's time to do this for me, to do this for my family, to do this for everyone out there suffering with no hope. Maybe I can be a piece of the puzzle. Maybe I can be a part of finding answers, answers that have been so elusive for so long -- long before I first became sick.

And maybe, just maybe, I'll get better.

Wont let go.wmv

2011-02-06T11:31:00.000-08:00

A nice Sunday thought for all of us going through hard times. Hugs, my friends.

Bumps In The Road

2011-01-25T09:34:00.000-08:00

I like this picture, because even though the road is "bumpy," it looks like it's headed in the right direction.

I had my doctor's appointment yesterday. He agreed to give me a one-month trial. One month, and if there are any negative side effects, he's pulling the plug immediately. One month, and he would like me to be very honest in my assessment of my symptoms at that point. He was careful to make sure I shouldn't get my expectations up. He emphasized that it was very possible that I will not see any improvement.

I was thrilled. I feel like his approach is the safest and best I can hope for. He is exercising every imaginable caution. He is making sure that my health is top priority, and if he ever feels the risks of taking the medication are too great, he is going to stop the treatment. I'm OK with that. I left his office with a priceless piece of paper in my hands -- a prescription for hope.

Priceless? Well, let me reword that. It definitely comes with a price tag. I found out that my insurance doesn't cover the medication, and that it would cost about $1200. For one month. I can't say I was surprised; I had already researched the drugs and knew it wouldn't be cheap.

So, I now have two options. I can upgrade my insurance, which would increase my monthly premium. I would still have a $750 pharmacy deductible that I would have to pay up front, and then the medication would be $60 a month. Or, since I have no idea if I'll be able to continue taking the meds longer than a month, I could simply pay out of pocket now and wait and see. I have an option for getting the medication cheaper, but it would require waiting about three weeks to get it.

I'm leaning toward a combination of the two. Pay out of pocket now, and then upgrade my insurance if it looks promising. Upgrading my insurance is the better option if I add a second medication to my treatment.

Which all led to a meltdown this morning. Why? It's not just the financial stress this will place on us. We've shouldered financial stress before, very successfully, I might add. No, I can't help but wonder, is it worth it? Which really means, am I worth it?

Ah, you think with time you overcome your teenage insecurities. You accomplish things, you achieve things, you catch yourself feeling proud of yourself once in awhile. And then something like this happens, and the old voices you have spent years silencing rise again to the surface. The old voices telling me I'm worthless.

But what if I asked my children, "If you could have your mom back for just one day, how much would you pay?" I think the answer would be more than a thousand dollars. And if I asked my husband, "If there was the slimmest chance that you could ease your wife's suffering for just one day, how much would you pay?" I imagine his answer would be close to a million.

Taking Its Toll

2011-01-18T12:22:00.000-08:00

We are moving to a new home at the end of this month. I am very happy and excited about the move. So many pluses -- it's single story, it has a pool, I can leave so much clutter behind. And yet, there is that dreaded process of getting there.

Oh, how I hate to move! It challenged me to my limits before I got sick. I know I need to pace myself and leave most of the work to my husband, my kids, and my lovely, helpful friends, but still, it is taking its toll. Already the stress is biting in to my sleep. It takes longer to fall asleep, and once I stir awake, there is no way to doze off again. I have that nagging feeling that I should be doing something, even if I know I really shouldn't. I feel the days ticking by like seconds on a bomb. Are we going to make it in time? Is it possible to get this done?

I see an inevitable crash at the end of the tunnel. But I also see a wonderful new place for me to rest and recuperate afterward.

Any tips? I'd welcome any ideas for getting through the next two weeks.

Sticky Situation

2011-01-12T12:18:00.000-08:00

Ah, what a day. I went in to get my blood work done. I was pleasantly surprised that the wait was so short -- I only got through the introduction of the book I had brought to read. This is great, I thought.

Not so fast. The phlebotomist had a hard time finding a vein. She kept saying, "You're veins are so tiny" while she poked first my right arm and then my left and then back to my right. She finally took a shot at my right arm, only to get nothing. I imagine she felt the same as oil men do when they dig for oil and come up empty.

She then told me she'd have to try my hand. She transferred me a separate room and had me lie down. She was able to get a trickle from that poke, and bruised me in the process. Finally, she called another technician to give it the ol' college try. That dear woman was able to find a vein in my right arm immediately, popped the needle in, and collected the blood just fine. I sing her praises.

I stayed to rest just a few minutes to make sure it was safe to drive. Forty minutes. It had taken forty minutes to drain four tiny vials of blood from my veins.

Lessons learned:

Drink plenty of water the day before.
Get blood work done in the afternoon when I'm better hydrated.
Ask for a new phlebotomist if the one I've got seems uncertain.

Just think, I'll only have to do this every 1-3 months while I'm on the new medication. :)

First Visit With ID Doctor

2011-01-06T13:02:00.000-08:00

I had my long-anticipated first visit with an Infectious Disease doctor. It went as well as could be expected. He knew a little about CFS, and even less about XMRV. And here I come in, telling him I have CFS and am XMRV positive. What did I expect? That he would turn around and write me a prescription on the spot?

No, of course not. What I expected -- and hoped -- was that he would be open-minded and intellectually curious. Which he was. He gave me a lab requisition to get a baseline, and he told me he would research XMRV before our next appointment, in two weeks. He said he would consider -- CONSIDER -- treating me, based on his findings.

That's all I can ask. I know there is a lot of controversy surrounding treating XMRV. I know that not everyone who tries treatment gets better. I know that it might not work for me. But something in me tells me I have to try, I have to see for myself. If I get better, I am not going to recommend everyone who has tested XMRV positive go out and demand HAART treatment. But I am going to raise my voice like a bullhorn, and let anyone who will listen to me know that something needs to be done. More research. Safer drugs.

It's time to stop sweeping under the rug 4,000,000 people suffering from such a debilitating disease.

New Year's: Look Not Behind Thee

2011-01-03T10:56:00.000-08:00

Last year was such a challenge for me. I am moving forward into the New Year with lessons learned in my back pocket and hope for tomorrow.

Christmas Crash

2010-12-27T13:27:00.000-08:00

Everyone who is Christmas crashing, raise your hand!

I know it's not just me. I have a sneaking suspicion that pretty much all of us overdid it for the holidays.

Christmas is a time of reflection for me, a time for taking stock. What I learned this year is that, although CFS is not supposed to be a progressive disease, it has certainly been progressive for me. Each year, I have gotten worse and worse, and I've been able to do less and less. All I accomplished this year was shopping, and most of that was done online. Even so, by Christmas morning, I felt like I had just run a marathon and could barely crawl across the finish line. I ended up taking an hour and a half rest in the morning and another hour rest in the afternoon, and I still felt miserable well into the evening. I was grateful my family went to my in-laws without me, even while I was sad to miss out on the fun.

I suppose the good news is that I felt much better yesterday, so I didn't stay horribly crashed too long. I'm happy to get back to my regular routine, you know, the one where I'm actually taking care of myself. I love Christmas, but this isn't the Christmas I remember. Once again, I find myself packing it away and saying to myself, "Next year has to be better."

I hope you all had a wonderful Christmas, and that it was a time well worth it! And here's to a healthier New Year for us all.

The Tipping Point

2010-12-16T19:30:00.000-08:00

When I first heard the news that I was XMRV positive, a tremendous feeling of peace and calm came over me. The uncertainty vanished. I know, I know, the science is still out... and yet, I can't help but think that I have found my answer.

My next steps are clear. I had decided on them before I sent my blood in for testing. I have an appointment on January 5th with an Infectious Diseases specialist. I am going to request to begin treatment with the AIDS drugs that have proven effective against XMRV.

I know the AIDS drugs have some serious side effects. I also know that people with CFS have had a really hard time getting on the drugs. It will be a challenge. And yet, I am not wavering.

I've passed the tipping point for me. My quality of life is so negligible that I am willing to try just about anything that offers hope for recovery. I am housebound. I miss out on important events with my family all the time; just yesterday, I was unable to go watch my son tie for 6th place in the school spelling bee. Side effects are not going to interrupt my life, because there just isn't that much to interrupt.

So, what about you? Where is your tipping point? Are you there yet? Would you take the drugs, side effects be damned, if you KNEW you would recover completely? Would you let your kids do it? Or would you wait for science to catch up and offer new, safer treatments?

Name Change

2010-12-14T13:06:00.001-08:00

Anyone notice the new name for my blog?

Christmas and ME

2010-12-12T13:25:00.000-08:00

Never is my disability more evident than at Christmas time. I am the Christmas planner in my family, the decorator, the shopper, the baker, the card sender, the tradition enforcer. I have been in the heart of the maelstrom, delegating and giving direction to all the parts of Christmas that I love which all lead into a satisfying, Spirit-filled Christmas day.

Not surprisingly, each Christmas since I came down with CFS has been increasingly different, increasingly simple. Now don't get me wrong, simple is a good thing. It scales back all the unnecessary and frantic materialism of Christmas and brings you to the heart of the season.

Yet this year, I kind of feel like it has stripped me of Christmas altogether. I've done my shopping online, and I've almost finished, thank goodness. However, there are no decorations yet. No cards sent. No stories read. No cookies baked. Just a huge to-do list of things that I need to do in an increasingly short period of time.

I feel like I haven't had time to even glance at the sky, let alone find the star and follow it.

Perspective

2010-12-02T13:18:00.000-08:00

I believe that God led my husband to me.

Seriously. The night we met, my husband had already had a date lined up. But as the day progressed, he started feeling like he shouldn't go. It was a persistent feeling; he thought maybe it was God trying to warn him that he'd get in an accident or something if he went. Reluctantly, he called the young lady and canceled their date. It was the first time he'd ever done something like that.

Now, with no plans for the evening, he had to scramble to find something to do. Some of his friends were going to a church dance that night in Pacific Beach (San Diego). They persuaded him to come with them. He arrived late; it was after 11 o'clock. He made the rounds, saying hi to the people he knew. And then he saw me.

He knew the minute he saw me that I would be his wife. He approached me and asked me to dance. I said yes. :) We danced the rest of the night together. He asked me for my number, and I wrote it on a gum wrapper and tucked it into his shirt pocket so he wouldn't lose it.

The first few dates we had, we talked like crazy. He didn't even turn on the radio during the first few dates (and this is a man who loves music). I had been planning on going up to Utah to go to BYU in a couple of months. He decided he would quit his job and follow me up there. I believe he would have followed me to the ends of the world, just to be with me.

It took him a mere three weeks to convince me to marry him. I changed my plans, stayed home, and we were married December 10, twenty-two years ago. Since that time, I would say that our marriage has fluctuated between really good and freaking amazing.

Why am I going through this story now? Well, I have been participating in ItStartsWith.Us 's Love Bomb project. Each week, I get an e-mail telling me of someone who is going through a hard time. Then I, along with hundreds of other Love Bomb participants, drop by that person's blog and leave an encouraging comment.

This week, the person receiving these Love Bombs is a young woman who has been married for seven years. She has two young children, and she is pregnant with her third. And her beloved husband died just a few weeks ago in a hunting accident.

And suddenly, I'm thinking, I'm OK with CFS. I don't mind it at all. I wouldn't care if it continued to progress until I was in bed, like our dear friend Laurel, or until my eyesight failed, like our good friend Kerry. I would only hope to face it with the courage and hope that they have.

And I'm OK with the financial troubles we've gotten ourselves into. If we went bankrupt 60 times over, or ended up living in our van, I'd be OK with that. And even if my kids get into trouble, struggle with drugs or teen pregnancy or failed grades or whatever, I can handle that. Because I have my husband, that wonderful man who loves me enough to cross any ocean, climb any mountain, or stay by my side through any suffering I may endure.

Overdoes It

2010-11-28T12:25:00.000-08:00

I overdid it yesterday. How, you may ask?

I did my stretches and yoga. I threw a turkey in the oven. I folded TWO loads of laundry. And I roasted some vegetables.

My sweet 13-year old daughter hugged me after dinner and said, "Boy, you really did a lot today, Mom."

*sigh* This is why the type-A person inside of me is climbing up the walls.

Double Whammy

2010-11-22T10:32:00.000-08:00

Close on the heels of my root canal, I came down with the flu. It has wiped me out completely. You know, prior to this, I never really connected that CFS "feels like" a bad case of the flu. But this time, I noticed how the flu has amplified my CFS symptoms -- CFS on steroids! -- and I can now see the similarities.

I've been a lump on a log. No writing. No blogging. No tweeting. Barely any Facebook. I'm hoping this week is a little more productive for me, but I still plan on taking it easy.

Getting the flu has also made me curious about the immune deficiencies of CFS. I've heard about it but never really understood how it works. I have noticed that although my throat and sinuses hurt, my body doesn't seem to be trying to get rid of the germs -- no mucous. I've been doing a daily nasal rinse to compensate, and I think it's been helpful. Hm. I guess, after four years, there's still more for me to learn and understand about this disease.

Hope you all are doing well -- as good as can be expected, at least! Enjoy your week of Thanksgiving.

A Different Kind of Ouch

2010-11-11T09:48:00.000-08:00

Words that strike fear in the heart of any PWC (person with CFS): I have a tooth ache.

It started Monday night, innocuous enough, but by Tuesday morning, it was raging. I called my dentist, and they were able to squeeze me in yesterday at 3:30 pm. Right in the middle of my scheduled rest. :(

I was told I needed a root canal. Hm, that's interesting, because the dentist I went to about five years ago was supposed to have done a root canal on that tooth. Rip-off artist. I guess that's what you get when you are in a new community and don't know how to get referrals to the good guys.

The procedure took about an hour and a half. Luckily, I was able to ask for and receive nitrous oxide. Ah, good ol' nitrous oxide. At least it minimized some of the stress of the situation. Hopefully, it will minimize my crash as well.

Because crashing I am! I took pain medication last night before bed, but I woke at 2:15 am in agony. Took more pills, but I awoke again at 5:15 am and had to wait another hour before I could safely take more pills. I was grateful for the pain management techniques I had learned during my childbirth years. I took another pill at 6:30 am. Now I have to wait another hour before I can take another pill. :(

Luckily, my kids are out of school for the long weekend, and I have no responsibilities I need to muddle through. Just rest and recuperate. I hope the crash is minimal and short-lived. A root canal for a healthy person is traumatic enough; for PWCs, it's brutal.

Exciting News for Me

2010-11-02T16:22:00.000-07:00

Many of you know that I started a website, Chronic Fatigue Community, about two years ago. I spent a lot of time developing it, adding pages and articles about various topics related to CFS. I was especially proud of the blog roll I had which included many of your blogs. That list was the most visited page on my website, and it had the most repeat visits as well.

Well, my health deteriorated, and I was unable to keep adding to the site. And although the site was a labor of love, and not expected to generate much income, I found that the annual $299 maintenance fee was too much for me. So I made the decision to not renew it this year.

I just received an e-mail from the parent company, Site Sell. They've made me a tremendous offer. They want to reactivate the site and take over management of it. They will monetize it and maybe add a few more articles to it and make it profitable. They will split the proceeds with me 80/20 (I'd get 20% for doing nothing). I have the option of renewing the website again at any time and taking it back over, keeping the benefits that they've added to the website.

They made the offer based on the website's content and potential. They said they make an offer like this to only about 15% of the websites that choose not to renew. I'm so excited that all that hard work won't go for naught, and that the information I've collected and shared will still be available to the public. I'm also excited that the referrals to your blogs will still be accessible for people who are looking for support through the blog community. If it ends up being profitable, well, it would be exciting to be able to add to the family's income for a change.

The site is www.chronic-fatigue-community.com . It will still be down for awhile until they get it up and running again.

Backlogged

2010-10-28T13:44:00.000-07:00

So, I called VIP Dx to see how things were going with the testing. For some reason, I was a little panicked since I hadn't heard anything from them. I thought maybe they hadn't received my samples, or they got there too late, or they had been rejected for some reason. I didn't want to drag the wait out longer than needed.

None of the above had occurred. Instead, they're backlogged, and instead of four to five weeks, it will take six to eight weeks to find out the results. Hey, I've waited over four years, what's another week or four, right? At least I know that something is happening.

It made me think of all the activities that are backlogged in my life. All the have to's and ought to's that are piling up because I just don't have the energy to get to them in a timely manner. And then, all the way at the back of the line, so far back I can't see most of them, are my want to's. Backlogged into oblivion.

Maybe I should throw caution to the wind and escort one of those end-of-the-liners right up to the front of the line. If I could only remember what they were.

Better Than Expected

2010-10-16T12:20:00.000-07:00

Tuesday was a Very Big Day. I thought I had it all planned out. Parent/teacher conferences for four of my kids. I went to the boys' conferences first. They were back to back, one at 1 pm, the other twenty minutes later. Less than an hour total, not bad. A little more walking around than I'm used to -- it's a pretty big campus for an elementary school, and parking was atrocious. Still, I felt pretty proud of myself for weathering it well. I took a long, deeply relaxed rest. Geared up for the evening conferences.

I thought I would be able to finish in an hour. I was so sorely mistaken. Lines were backed up to see each teacher, and it dragged on for two hours. I came home exhausted, wiped out, fearful, and angry. I hate what CFS does to me sometimes. I was just trying to be a good mom. I wouldn't have put myself through that if there weren't important issues to discuss.

I went to bed, tossed and turned for about an hour, and finally drifted off to sleep.

I felt the effects immediately the next day. Good news? I didn't dare hope. I defiantly recuperated. I didn't stretch or yoga or make my bed or do laundry. I read books, played on the computer, and watched TV. I rested a little more than usual. My afternoon rest was deep, to the bones.

The next day, I could still feel the effects, but not quite as bad. Hm. Still, I forced myself to do nothing. Except I think I made my bed. Yesterday, I could tell I was doing better. I made my bed and added a load of laundry. And today? I've already made my bed, started a load of laundry, and I'm contemplating folding the two baskets of clothes that have been neglected for a week. Plus, I had enough energy to boss the kids around and have them tidy the house. My front room is ready for a little decorating. I think I need to find the animated haunted house I've kept in storage.

I so worried that this would be a big event, one that would kick my sorry butt back to square one. Instead, it seems like I'm having a very normal post-exertional malaise reaction. Bouncing back to baseline already. Whew. I'll let go of some of that anger now.

Still waiting on test results. VIP Dx says it takes five weeks to get results back. Five freaking weeks. I guess if I've waited four years, I can wait another five weeks, eh?

The Waiting Game

2010-09-28T13:00:00.000-07:00

I was finally able to get my labs done yesterday. I cut my morning rest short, and I arrived at the lab at 11:40 am. They close at 12 pm for lunch. My timing couldn't have been better. Twenty minutes layer, I was staring at a tray full of vials filled with my blood. An awful lot of them.

I called my husband, feeling triumphant that I had completed that task. When I greeted him, he said, "What's wrong? You sound terrible." Yep, he's that good. I guess I didn't sound as triumphant as I felt. He could tell the ordeal had wiped me out, just by hearing me say, "Hi, babe."

So now I wait. I wait for my doctor to get back test results that will tell her nothing... and then the test results that will tell me everything. Am I XMRV positive? Or will I test positive for one of the other viruses they've discovered? We'll see. Once I know, I can decide on a course of treatment. See if I should wait for more science or go for HAART treatment.

Have I ever mentioned how impatient I am? Let the torture begin.

Baseline, Part II

2010-09-21T12:59:00.000-07:00

A note about my list of activities. Everything on the list is subject to my energy envelope. I find that I fill most of my days with low to moderate energy activities. But even on my best energy day, I can only tolerate up to eight moderate energy activities. If I add any of the higher energy activities, that number plunges dramatically.

Sometimes, I'll piggy-back high energy activities. I tolerate two high energy activities in one day better than I tolerate two high energy activities in separate days, especially if it's the next day. It's like serving my sentences concurrently rather than consecutively.

I have pain in my hips and neck always. Sometimes I have pain in my back. I get mild headaches a coupleof times a week. I get a substantial headache about once a month. My current level of pain is a steady three. On my worst days, it bumps up to a five. On a good day, for example right after my massage, it drops to a two.

I'm not quite sure how to quantify brain fog. My memory is completely unreliable, even if I have it written down on the calendar. I blurt out the wrong word several times during the course of the day. I have a hard time finding words, and sometimes my mind just goes completely blank, like a white board wiped clean. It takes me several uncomfortable seconds (10 or more) to retrieve my thought processes. Sometimes, if someone reminds me what I was talking about, I can pick up where I left off. Sometimes it's just gone, and I move on.

Did I leave anything out?

Baseline

2010-09-19T12:51:00.000-07:00

Things that are very low energy, that I tolerate extremely well with no need for any kind of rest after.
reading
watching TV
crocheting
playing on the computer
resting (duh)

Things that are moderate energy, that I tolerate well. I may need a small rest immediately after.
showering
yoga
stretches
wearing my negative heel exercise shoes for daily activities
doing laundry
up to five minutes tidying my home
picking up my daughter after school (30 minute round trip total)
putting dinner into the crockpot
visit in my home (up to 30 minutes)
visit on the telephone (up to 20 minutes)
parenting
writing
reading on the computer
blogging

Things that are high energy, that I tolerate fairly well. I definitely need a rest immediately after and a recuperation day the following day.
sex
massage
visit outside my home (up to 45 minutes)

Things that are high energy, that I barely tolerate. I need a rest immediately after and several recuperation days.
doctor's visit
pedicure
going out to dinner
watching my son play water polo (up to one hour, home games only)
any event (up to 30 minutes) such as meetings with teachers or a baby shower

Anything not on the list is too energy intensive with too little benefit for me to include in my life.

Grieving

2010-09-17T09:12:00.000-07:00

It's hard to go to the doctor's and tell her what's wrong. It's hard to tell anyone what's wrong, because I spend so much of my energy, so much of my waking hours burying the problem, pushing it under the surface, trying to minimize it so I can have a normal life.

Pain? Sure, there's pain, but I've trained my mind not to dwell on it. Yes, I'm so tired my bones and muscles barely function, but I sit at my computer and write, or play games, and I trick myself into thinking that I'm lazy and wasting time, when really, it's the only thing I can do. I sit on the couch and crochet while watching TV, and I talk with my girls, not acknowledging that I am here because I can't get up, walk over, and stand in front of the stove for 15 minutes cooking dinner. Or even stand there long enough to pop the freaking corn dogs in the oven.

I nag at my boys, insist they get their jobs done before going outside, pretending I'm just being a good mom teaching them responsibility, when really I'm begging them inside, please, do this, my work, for me with a cheerful heart. Please, little child, help me, because I am more helpless than you.

How long, my God, my beloved Father? How will you know when I've suffered enough? Ho will you know that it's too much for them? People have lived with this disease for decades, although living is perhaps too strong a word. How much longer for me?

Deflated

2010-09-13T16:42:00.000-07:00

So, I went to the doctor today. The last time I had seen her was two and a half years ago. At that time, we were wading through all the tests to eliminate all other possibilities. I wouldn't exactly say that we're back to square one, but it's probably no more than square three.

So, I need to get some labs done. Look to see if I have lupus, Lyme, mono AGAIN. She wouldn't prescribe Klonopin for me just yet. She also didn't seem to be jumping up and down about the LDN. I asked if she'd heard about the XMRV studies, and she said they were "inconclusive." I told her there were people out here that have tested positive for XMRV and started taking HAART therapy and have been getting better. She does support me getting tested for XMRV (I mean, what is she going to say, I'm paying for it), and she says she'll keep an open mind if I come back positive. She would want me to consult with an ID first, just to cover her back if she does go out on a limb and prescribe the HAART meds for me.

What slight glimmer of hope did she offer me in the interim? She gave me samples of Cymbalta. She said many of her patients have shown significant improvement on it. I told her that the pain is minimal for me, that the fatigue is a much greater concern. Still, she thinks I should give it a try. I didn't remember in the office that Cymbalta is an anti-depressive; for some reason, I was thinking it was a sleep aid. Probably because the commercials are so similar. I did not tolerate antidepressants well in the past; they increased my insomnia, made me feel really wired. And I am NOT giving up my sex life. It's the only part of LIFE that I really have left, and I'm not going to jeopardize it. If there are any sexual side effects, we're done.

As you can see, I'm not thrilled with how things went today. Add to it that my appointment took two and a half hours, and by the time I got in to see the doctor, I was a trembling, emotional mess. Totally screwed up today, and I know I'll be reaping the payback tomorrow.

Still... the most important thing that happened today is that we are moving forward with the XMRV testing. Klonopin and LDN are for interim relief, in my opinion. I believe the HAART treatment is what will really be helpful in returning my life back to me.

Faith and Hope

2010-09-05T12:40:00.000-07:00

Sunday is a time of reflecting and renewal for me. I loved this message, and I thought I would share it to all who embrace their challenges with faith.

First Stop

2010-09-01T10:56:00.000-07:00

This is what I'm going to do when I get better:

http://dyingforchocolate.blogspot.com/2010/08/chocolate-salon-news-taste-tv.html

Plan of Attack

2010-08-23T18:12:00.000-07:00

We have not had insurance since my husband left his job and started our own business three years ago. I was not overly concerned, because frankly, I was getting nowhere with the doctors, and I didn't feel like they had anything more they could offer me. I figured pacing and supplementation were as good as anything medically offered.

The discovery of XMRV changed things for me. So, last week, I purchased health insurance for myself. As soon as I get my ID card, I'm going to meet with my doctor again. I will first ask for Klonopin and LDN, two drugs that have been known to be somewhat helpful for CFS. Then, I plan on getting tested for XMRV. If I come back X+, I will be requesting to be treated with the HIV drugs that work against XMRV.

I don't mind being a guinea pig. I don't want to wait for clinical trials. My life has been scraping the bottom for about a year now. This summer, I barely left the house. I can no longer go shopping, and driving any distance is difficult. I can't imagine that side effects from the anti-retrovirals could possibly be worse than what I am already living. I strongly suspect that it will help me, and I don't like the idea of waiting, allowing the retrovirus to continue to reproduce and gain a further stronghold in my body.

Of course, I'll let you all know what happens as it happens! In the meantime: Has anyone tried Klonopin and/or LDN for CFS? What have been your experiences?

My CFS Is So Bad...

2010-08-13T13:12:00.000-07:00

*audience yells* ... How bad is it?

My CFS is so bad, it got kicked off Oxygen's "Bad Girls Club."
It's so bad, it was featured last night on Fox's "Cops."
It's so bad, rebellious teenage girls want to go out with it.

My CFS is so bad, it's not funny.

Yesterday, my dear friend Josie took my boys to Cub Scout Camp for me. I got a phone call at 9:00 am. Apparently, you had to wear tennis shoes, and my ten year old was wearing sandals. She said she'd come by, pick up his tennis shoes, and drive them back out to him for me. See? She's a sweetheart.

But then, I had to scour the house looking for the stupid tennis shoes. Upstairs, downstairs, a good three times, braving the contents of his closet, looking under blankets, looking under the kitchen table, checking the shoe basket, where they should be. I finally found an old pair that probably didn't fit anymore, and that was the best I could do. All this took less than fifteen minutes.

And it did me in. Stick a fork in me, I was done. Long morning rest, long afternoon rest, early bed time, and I was still wiped out. All from a little shoe searching.

I've noticed this relapse isn't relenting. I think I may need to face the fact that this is my new normal. It is what it is, and it's time I accept it.

Adjustments

2010-08-05T21:33:00.000-07:00

How am I doing with my Daunting Things? Hm, let's take a look...

1. Super-Walmart: Sent my son.
2. School registration: Sent my son.
3. Back to school shopping: Ordered online for my younger boys; let my son take my girls shopping.
4. Visit from my sister: Suck it up. It was only three hours (ha! only!), and I rested up tons the next day.
5. Carpooling: Still have three weeks before school starts.
6. Sleep over: They ended up at their friend's house instead.
7. Tidying up: Had my kids do it.
8. Taco salad: Had my kids do it, with managing instructions from me.

Have I mentioned how much I love and appreciate my kids? My son has been such a sweetheart, running all over for me now that he can drive. And they loved learning how to make taco salad. It helped that I called it "Chef School." I love that my kids "get it" and do what they can to help our family adjust to my disease.

Daunting Things

2010-07-31T13:44:00.000-07:00

1. Super Wal-Mart, even in one of those complimentary motorized scooters
2. School registration
3. Back to school shopping
4. A visit from my sister
5. Car pooling
6. Eight year old boys at my house for a sleep over
7. Tidying up
8. Making taco salad

The Exercise Question Revisited

2010-07-20T09:42:00.000-07:00

I have to admit -- during my relapse, the amount of exercise I engaged in shrunk to nearly nil. Just a sporadic bit of yoga, that's all. And, I think I paid the price.

When I reached the peak of pain and deconditioning, I knew it was time to revisit the question of exercise.

Here's my theory: Managing pain consumes a lot of energy. If exercise helps eliminate a lot of my pain, then I would then have that energy at my disposal for fun stuff, like showering or making my bed. Also, it takes a lot more energy for my deconditioned body to do activities than a body in good condition would. If I improve my strength and endurance, again I will be making my body more energy efficient. It seems to me that exercise is an important part of my recovery.

Yet exercise is risky and fills my heart with fear and trepidation. I know what happens when I do too much too fast. I would have to proceed with caution.

I decided that exercise needed to find a permanent place in my daily routines. Recognizing that it has a high energy requirement, I would simply have to scale way back on all my other activities in order to fit it into my energy envelope.

So, I added morning stretches/isometric exercises, modified from the book I have, Pain Free. I also do yoga before my morning rest. And, I bought some of those negative heel exercise shoes that I wear all day.

I did feel a push back from it when I started, but it didn't cause an outright crash. I just had to scale way back on my other activities. I've adjusted now. And I've tolerated a slight increase in my morning stretches. My pain has diminished. I don't feel like I've made a lot of progress in conditioning, but hello! Patience, child.

I think I'm on the right track.

Eventful

2010-07-12T18:35:00.000-07:00

As many of you may have noticed, I don't post very often when my health isn't doing very well. And, well, I've been pretty spotty for some time now. I know my CFS well enough now to recognize the culprits: two big, important, stressful events.

The first was way back in May. The reason I didn't get to post for ME/CFS Awareness Week was because I was wiped out from a speaking engagement. That's right -- I was invited to speak to my congregation at church, and I accepted. The topic I was given was vague. It was to talk about the blessings of the gospel. When I was invited, they suggested that I use my perspective from the trials I have.

I knew that many of my church family did not understand why I suddenly was not coming out anymore. I felt like they deserved a solid explanation, for everyone's sake. So, I went into detail about what my life is like with CFS. Then I shared with them how much the Lord has blessed me and helped me shoulder this burden. I described the hidden blessings I have found through CFS, many of which I mention frequently here on my blog. I told them that I know God is mindful of me, and He loves me and takes care of me through the miracle of my loved ones.

I was raw and vulnerable after sharing this with oh, about 200 people, some whom I know didn't "believe" in CFS. But I had a very positive response afterward, and more importantly, people finally understood. CFS is no longer the elephant in the room. They can ask questions and treat me like a normal person again. It was worth the very severe crash that followed.

The second event was just two weeks ago. My in-laws celebrated their 50th wedding anniversary. I was unable to help with the majority of the party planning and preparation, but I did volunteer -- yes, that's right, volunteer -- to put together a 400-picture slide show. That meant going through several hundred photos, selecting the right ones, scanning, saving, cropping, touching up, and putting them all in the program I was using. It was exhausting, especially since the Howells are procrastinators and I got a lot of photos last minute, but the end result was fantastic. I felt like I had pulled my weight, even though I did no cooking, setting up, or taking down.

The night of the party entailed an hour and a half drive out to the desert, the stress of family relations (I know you know what I'm talking about!), standing in the heat for numerous family photos, and another hour and a half drive home. I only stayed about two hours, by which time I was shaking and crying and leaning on my husband for dear life as he walked me to the car. My son drove me home.

Of course, I crashed. Just when I was finally starting to recover from my May crash. Frustrating! But worth it. See?

The good news is that I have no more events. I've taken a hard stance for my health. I have skipped my beloved water polo games, and I have broken my boys' hearts by saying no to soccer this season. I'm giving myself time to heal. And I will keep you posted on my progress.

The Loneliest Summer

2010-07-05T13:54:00.000-07:00

Summer has always been my favorite time of year. Growing up, I had endless freedom to explore and create my own adventures. Popsicles, lemon aid stands, bicycles, sprinklers, crawdad catching, hiking, swimming, ghost stories under the lamp post at night. I grew up, and I transferred my love of the summer to my children and lived vicariously through them.

Well. CFS changes everything, doesn't it? The Summer of No has turned into the loneliest summer. Our 4th of July tradition when I was a kid was to spend the entire day at the beach. We would build a big bonfire as evening fell. We'd eat roasted hot dogs and marshmallows. We'd pile up in camping chairs and under blankets as the temperature dropped and the night darkened. Then we'd watch fireworks off the pier. We'd fall asleep in the car on the way home, and my dad would carry each of us into the house and tuck us into bed.

What would I have done this year if I had been "normal?" I would have enjoyed watching my kids in the 9 am bicycle parade, followed by water games and adult gossip at my neighbor's house on Saturday. That night, I would have taken my kids to the secret dirt lot that is just perfect for watching the "early" fireworks. Most of my friends know about this secret spot; we would have had little ones running around with glow sticks and necklaces, a table of snacks, and more adult gossip. I would have gone to church with my family Sunday morning. Then, in the evening, I would have watched my eight year old son participate in a patriotic choir performance. I understand he was the loudest one singing in the first song, but he didn't yell. The second song, he wasn't the loudest, but that's just because Julia was yelling, and that doesn't count. (As described by my ten year old son.) After that, I would have joined my family at another secret location to watch the big fireworks displayed from the city. I would have tumbled into bed exhausted and happy after so much time spent with family and friends.

But I didn't. Saturday, I stayed home and worked a little on my novel while my kids played video games. I made them do a little housework; I did a little laundry. Sunday, while the rest of the family was off enjoying the festivities (because my husband is wonderful that way), I watched multiple episodes of What Not To Wear and HGTV Design Star.

Sometimes, I really hate this disease.

Making New Friends

2010-07-02T09:58:00.000-07:00

A big Hello to the Happy Panda who has recently started a blog. Welcome to our fabulous CFS community. I hope you enjoy the caring and wonderful people you meet here. Here's a link to her blog, and I've added her to my sidebar for future finding.

The Happy Panda

49 Things I've Accomplished

2010-06-18T14:51:00.000-07:00

Looks like I'm halfway there!

1. Started your own blog

2. Slept under the stars

3. Played in a band

4. Visited Hawaii

5. Watched a meteor shower

6. Given more than you can afford to charity

7. Been to Disneyland

8. Climbed a mountain

9. Held a praying mantis

10. Sang a solo

11. Bungee jumped

12. Visited Paris

13. Watched a lightning storm

14. Taught yourself an art from scratch

15. Adopted a child

16. Had food poisoning

17. Walked to the top of the Statue of Liberty (not enough patience to wait in that line!)

18. Grown your own vegetables

19. Seen the Mona Lisa in France

20. Slept on an overnight train

21. Had a pillow fight

22. Hitch hiked

23. Taken a sick day when you’re not ill

24. Built a snow fort

25. Held a lamb

26. Gone skinny dipping

27. Run a marathon

28. Ridden in a gondola in Venice

29. Seen a total eclipse

30. Watched a sunrise or sunset

31. Hit a home run

32. Been on a cruise

33. Seen Niagara Falls in person

34. Visited the birthplace of your ancestors

35. Seen an Amish community

36. Taught yourself a new language

37. Had enough money to be truly satisfied

38. Seen the Leaning Tower of Pisa in person

39. Gone Rock climbing

40. Seen Michelangelo’s David

41. Sung karaoke

42. Seen Old Faithful geyser erupt

43. Bought a stranger a meal at a restaurant

44. Visited Africa

45. Walked on a beach by moonlight

46. Been transported in an ambulance

47. Had your portrait painted

48. Gone deep-sea fishing

49. Seen the Sistine Chapel in person

50. Been to the top of the Eiffel Tower in Paris

51. Gone scuba diving or snorkeling

52. Kissed in the rain

53. Played in the mud

54. Gone to a drive-in theater

55. Been in a movie

56. Visited the Great Wall of China

57. Started a business

58. Taken a martial arts class

59. Visited Russia

60. Served at a soup kitchen

61. Sold Girl Scout Cookies

62. Gone Whale Watching

63. Got flowers for no reason

64. Donated blood, platelets or plasma

65. Gone sky diving

66. Visited a Nazi Concentration Camp

67. Bounced a check

68. Flown in a helicopter

69. Saved a favorite childhood toy

70. Visited the Lincoln Memorial

71. Eaten Caviar

72. Pieced a quilt

73. Stood in Times Square

74. Toured the Everglades

75. Been fired from a job

76. Seen the Changing of the Guards in London

77. Broken a bone

78. Been a passenger on a motorcycle

79. Seen the Grand Canyon in person

80. Publish a book

81. Visited the Vatican

82. Bought a brand new car

83. Walked in Jerusalem

84. Had your picture in the newspaper

85. Kissed a stranger at midnight on NYE

86. Visited the White House

87. Killed and prepared an animal for eating

88. Had chickenpox

89. Saved someone’s life

90. Sat on a jury

91. Met someone famous

92. Joined a book club

93. Gotten a tatoo

94. Had a baby

95. Seen the Alamo in person

96. Swam in the Great Salt Lake

97. Been involved in a law suit

98. Owned a cell phone

99. Been stung by a bee

The Summer Of No!

2010-06-16T11:41:00.000-07:00

I've noticed a pattern in my CFS life. I avoid the hard "no." This would be anything where someone else's needs are in conflict with my own.

Say I'm determined to get to bed earlier, but my husband is enjoying my company as we sit together on the couch watching TV. I love sitting on the couch with my husband watching TV. So, I end up going to bed one or two hours later than I should have.

Or maybe one of the kids comes up to me and says, "Mom, can I _____?" (insert activity that requires me to drive them somewhere.) I already have so much guilt over all the nos I've already said, so even if I'm tired, I'll probably say yes.

The hardest of all, now that summer is here, are the invitations. Weekly swim parties. A Fourth of July barbecue. Family dinners. I so badly want to say yes! Maybe if I pace before and after? I don't know. The best thing is for me to Just Say No. I may be able to tolerate a tiny bit of yes, if I limit it to one hour or less, once in awhile. But I'm afraid I'm going to have to learn to embrace the hard "no."

So, here it is: No, I cannot make family functions right now, unless it's a once in a lifetime event, like my in-laws 50th wedding anniversary. Even that, I'm taking off early. No, I can't make it to your party. No, I can't drive you places. No, I can't stay up any later. No, I can't.

Embracing the Summer of No!

Lessons from Nemo

2010-06-03T14:35:00.000-07:00

I love the movie "Finding Nemo." I think it is one of those rare films that is not only darling and entertaining, but contains tons of hidden nuggets of wisdom. While watching it the other day, one particular scene struck a chord with me.

After facing such obstacles as sharks, sea monsters, and jelly fish, Marlin and Dorie find themselves very near the end of their journey. All they have to do is find Sydney, Australia. Dorie gets the idea to ask for directions, and they end up being swallowed by a whale.

Inside the mouth of the whale, Marlin flings himself repeatedly against the unmoving baleen barrier between him and freedom. Of course, it is essentially hitting his head against the wall, and he makes absolutely no progress. Meanwhile, Dorie is riding the swells of water that carry her to and fro with unabashed glee.

Neither of them knows, at that moment, what the intentions of the whale are. Neither knows what the outcome will be. They could be safe, or they could be in grave danger. They just can't know what will happen next until it happens.

Ultimately, the whale turns out to be a friend, and the ride in the whale's mouth is a shortcut to where they were trying to get all along.

I think everyone in life, at some point, finds himself swallowed by a whale. You are going along just find, living your life in the direction of your choosing, when something unexpected happens. You are thwarted. Your life takes an unwanted detour. Health issues, a lost job, relationship problems, a wayward child -- hey, I didn't ask for this!

I would never want to give up Marlin's determination. But there is a lot to be said for Dorie's abandonment, rolling with it, going with the flow, finding joy in a seemingly joyless situation. I think you have to have a talent of forgetting, like she did. You have to let go of the pain long enough to be happy.

I think that may be why people with faith find it easier to shoulder such burdens. We know the whale; we know He is benevolent and good and only wants what's best for us. I believe that at the end of the journey, we can look back and see that it was a shortcut, after all. Maybe not a shortcut to where we wanted to go, but certainly a shortcut to whom we wanted to become.

Color My World

2010-05-30T18:42:00.000-07:00

Inspired by a change on my writing blog, I decided I needed more color in my life. So, I changed my blog background. I love the beach, so it's no surprise that I went with that theme. I like the color change.

As you probably have guessed, I haven't been doing well lately. Not unexpected. I'm recuperating pretty well, though, and I'll be back to blogging soon.

Changing the background wiped out my blogroll, so if I missed anyone on my sidebar, put it down to brain fog and remind me. =)

Walking Through a Meadow

2010-05-15T09:58:00.000-07:00

I feel so sorry for people without CFS.

That's right, I said it. And I seriously mean it.

My husband took my boys camping last night for the Fathers and Sons event that our church does every year. The boys are always excited about it. They love spending time with their dad. The girls and I, meanwhile, do a Girls Night Out. Except this year they went out and brought it all home to me: Mexican food, smoothies, a movie, and Twizzlers. We had a good time.

Well, it's barely past 9 am, and my husband came home with the boys! What the...? Apparently they got bored and wanted to come home. My two youngest are already playing video games, and my oldest is in the shower.

Now, I remember camping as a kid. It was not action packed all the time. I loved sitting under the trees, listening to the birds, feeding squirrels and chipmunks, reading a book. Sometimes we went for a hike or played a board game together. Overall, it was pretty laid back. And relaxing. And soothing. I loved it.

How sad that my guys couldn't decompress like that. And suddenly, I thought -- I feel sorry for people without CFS. They are always going, going, going, and they miss so much of life because of it. It is like they are traveling by plane everywhere they go, but I am wandering slowly through a meadow. Sure, they get farther and get more done. But I see more beauty and find miraculous things along the way.

Missed It

2010-05-13T10:10:00.000-07:00

How ironic is it that I was having such a bad CFS day that I couldn't post for MECFS Awareness Day?

My First Author Interview!

2010-05-03T09:36:00.000-07:00

As in, I'm the author being interviewed! How cool is that? Thank you, Dorothy, it was a pleasure to participate.

We Do Write

Count Me In!

2010-05-01T09:24:00.000-07:00

I Fight

2010-04-25T14:39:00.000-07:00

There's a moment, when my husband comes to bed after I've already been drifting in and out of sleep for a couple of hours. His movements in the room cause me to stir, to surface back to consciousness. I don't know what he sees, but sometimes he reaches over and caresses my forehead, like a parent would a sick child. It is the only moment when I am truly aware of my suffering, and I turn my face to him, begging him not to stop. Sometimes he continues softly rubbing my forehead, comforting me until I fall back to sleep. Sometimes he pulls me to him, and I am wrapped in his warm, safe cocoon.

When my relapse became so bad that I had to cut out all my remaining external activities, a friend of mine was worried. She said it sounded like I was giving up. What she doesn't realize is that I fight this disease every waking hour.

I fight this disease when the alarm goes off and I stumble out of bed to wake my children. When I referee an argument. When my daughter wants to talk. When my son needs help with homework. When I have to defend an unpopular decision.

I fight this disease when I take my pills and drink my protein drink. When I stretch away the pain. When I rest half an hour longer. When I choose soup for lunch. When I add vegetables to my pasta dish. When I go up to bed while my husband and children are still laughing at the programs on TV.

I fight this disease when I take my lunch outside to enjoy the sunshine. When I see the snow on the mountains. When I notice the first day lily bloom. When I hear the birds through my window, their songs, their dialogues, and the one nobody answers.

I fight this disease with every smile I smile. Every pleasant conversation. Every phone call. Every note I write. Every tear I give in to.

I fight.

Until the moment when I feel my husband's hand upon my brow. Shhh. I'm here. You don't have to fight anymore.

Monty Python Must Have Been Thinking of Me

2010-04-20T12:38:00.000-07:00

This looks a lot like my fight with CFS:

I think I'm at the stage of one-footed head-butting.

Too Much, Too Fast

2010-04-19T12:39:00.000-07:00

Yeah, I'm probably the only one who has done that, right?

In fact, I bet most of you were expecting this post after my last, highly optimistic post.

What is it about a sudden burst of energy that catapults us into unsustainable activity? Tsk, tsk, I should know better by now.

Well, I certainly took advantage of feeling a bit better. Pain has become a bigger issue for me lately, and so I revved up my exercise program a little to counteract it. Nothing aerobic, of course -- just a bit more stretching and strengthening. I have to admit, it felt soooo good! I just should have taken it a little more slowly, and not added quite as much as quickly as I did.

The other problem I ran into was a renewed interest in cooking. I've always enjoyed cooking -- not every night, necessarily, but I loved trying new recipes and using my lovely family as guinea pigs. Plus, since my new haircut, I decided I wanted to lose a little weight to look even more fabulous. Since I can't exercise my way down to my goal, that means eating better.

I discovered some wonderful freezer recipes, and I could not contain my enthusiasm. I've made Lazy Lasagna, Ham and Cheese Ziti, Spinach Soup, Chili, Tex Mex Rice Casserole, and Chicken Divan. (I've got all the recipes on my recipe blog, The Flagging Chef.) So, now I have eight dinners and seven lunches in the freezer, ready for those nights when I don't feel up to cooking and usually order pizza. They are all pretty easy recipes. I did all right on those days I had my kids helping me cook. I got a little crazy and made the Tex Mex Rice Casserole all by myself, and that was a big mistake.

Add to that a big stressor for me: We're going to have someone come in and clean once a month. She came over for an initial consultation on Friday. I am humiliated by my home. Back in the day, I took pride in the fact that although my house was occasionally cluttered (six kids, you know), it was never dirty. Now, once you get past the clutter, it is very dirty underneath. This is long overdue, but getting started is a horribly emotional ordeal for me. She starts on Wednesday; I know the payoff will be worth it.

So, I'm not exactly in a crash. That alone tells me I'm still on the mend. I just need to remember that the road to recovery is a bumpy old thing. I need to slow down and scale back a little. Be gentle with myself. Have a little chocolate.

Signs

2010-04-10T09:17:00.000-07:00

Signs I may be heading out of my relapse:

Thursday, I was able to shop AND cook dinner! Go me!

I got my hair cut yesterday after EIGHT months! I feel sassy.

My Life Is Different Now

2010-04-08T09:56:00.000-07:00

I suppose that's an understatement.

My CFS was a slow onset case. I don't have a CFS anniversary per se. I have a vague idea that something changed around summer of 2006. And then the changes snowballed. I suppose we all take a look back from time to time and see where we were and where we are. My life is different now.

It has taken me a long time to figure out that different doesn't always mean better or worse. I didn't choose this path. I didn't choose this life. And yet, that doesn't mean that this new way of living doesn't have value.

I think about the fast pace I was living before I became sick. I think about the direction I was heading. As my children were growing older and less dependent, I was moving away from my family and more towards me. I was growing an interior decorating business that showed some promise. I was reaching out more to my friends, becoming more social. I spent a lot of time volunteering at church. I supported my kids in their activities by driving them and being there for sports, scouts, clubs, and school.

When CFS hit, it stripped me of all those activities that comprised my life. There was a void. There was a panic. I had to find a new way to live.

It's interesting to see the pieces I've chosen to include in my new life. I am now anchored here, in my home, in my family. Instead of interior decorating, I am writing. My husband and I snuggle on the couch watching our favorite TV shows instead of spending the evening with friends. My moments with my kids are one on one, face to face, instead of driving in a car or with me as a spectator. I work a lot harder on personal spirituality. I connect with friends here.

Not better. Not worse. Just different.

Once I recover from CFS, my life will change again. I hope I balance the best of both.

Chuckle

2010-03-30T07:52:00.000-07:00

Did anyone need a little pick me up today?

The Laughter Movie

A Question for the Ladies

2010-03-28T09:49:00.000-07:00

Guys, you can skip this post if a little TMI makes you uncomfortable.

All right, ladies: Is it just me? That time of the month seems to make my CFS symptoms so much worse. Everything is magnified, and the progress I've worked so hard for fades away for the week. The headaches, the fatigue, the moodiness, the achiness -- it's like PMS intensifies my CFS and CFS intensifies my PMS.

Have any of you found a way to tame the beast and keep the suffering at a minimum? Any strategies for holding on to the progress you've made during this time?

So True

2010-03-26T09:02:00.000-07:00

"Hope is the feeling that the feeling you have isn't permanent." ~Jean Kerr

And One More!

2010-03-23T21:31:00.000-07:00

Wow, I've been out on the web making friends lately! I am also nominating Surprising Me for a Happiness Award. Stop by and say hi!

Did You Know Chocolate Helps CFS?

2010-03-21T10:55:00.000-07:00

That's what they say, anyway! And I love any excuse for a little chocolate. In celebration of the wonderfulness of chocolate, I found this fabulous blog:

Dying For Chocolate

It's full of yummy recipes using chocolate. Just make sure it's a high percentage dark chocolate to get the full antioxidant benefits. I'm including it on my sidebar, if you ever want to visit again.

Feeling Happy

2010-03-20T09:43:00.001-07:00

Thank you, Forgetful Girl, for nominating me for this prestigious and mood lifting award!

The rules:
1.)When you have received this award you must thank the person that awarded you this in the new post.
2.) Name 10 things that make you happy
3.) Pass this award onto other bloggers and inform the winners

So, without further ado, here are ten things, in no particular order, that make me happy.

1. The sound of my kids' laughter. I know I've mentioned this before, but there's just something about having a relaxed, easy feel in our home and hearing my kids' deep belly laughs that reassures me. I have felt how much CFS has handcuffed me as a parent, and it's good to know that they aren't that screwed up by it.

2. Making love to my husband, in all its various forms.

3. The beach. I have so many, thousands, of memories surrounding the beach, and all of them are perfect happiness.

4. Roasted marshmallows. My dad taught me how to make the perfect roasted marshmallow: finding the best coals, turning it around just right so it never catches on fire, ending up with a beautiful marshmallow brown and bubbly and crispy on the outside and a delicious gooey mess on the inside.

5. Sticky rice and mango. My husband and I went to a Thai restaurant for the first time on our 10th anniversary (many moons ago). We were stuffed, but the waitress was insistent to the point of rudeness that we try this dessert. It was pure heaven! It has never tasted quite as wonderful since, but I enjoy the quest to find that perfection again.

6. Wildflowers. Such surprising color in the most unlikely of places.

7. Reading. I almost said "reading a good book," but the bad ones are almost as fun, too!

8. Writing a scene and capturing the perfect emotion. The rest of writing can be torture, but getting something just right is exhilarating.

9. Sunshine and blue skies. There's a reason I live in Southern California! I can't stand the gray blah of winter elsewhere. Don't get me wrong, I know the snow is really pretty... the first day. It just gets old fast.

10. Learning. It is my safety blanket and muse. The first thing I did when I suspected I had CFS was research everything I could. It was comforting to me, giving me a (perhaps false) sense of control. I also love that "aha!" moment when something clicks and makes sense. For example, I just learned that the reason I hated The Lord of the Rings was because I'm not a milieu person. Go figure!

I could go on -- and I will, just one more thing. My blogger friends make me happy. I couldn't survive this illness without you. You inspire me, give me hope, teach me, and amaze me. There is so much strength and compassion in this community, and I lean on you more than you know.

I'm going to pass this award on to a few people new to our blog community that I've recently discovered.

Alison at blog Wormwood
Lee Lee at CFS 'n' gay
Chris at sickandtired
Alex at Life with ME/CFS (aka the Cabbage Stalk)

Orthostatic Intolerance

2010-03-12T08:40:00.000-08:00

CFIDS.org is hosting an upcoming webinar on orthostatic intolerance. You can find out more information at http://www.cfids.org/webinar/series2010.asp.

Learning to Dance in the Rain

2010-03-10T10:46:00.000-08:00

Click here:

Learning to Dance in the Rain

How I dance in the rain:

I lie in bed listening to my boys play and giggle.
I curl up on the couch and watch my favorite shows with my husband.
I read good books.
I connect with and gain strength from you.
I eat my lunch outside when it's sunny so I can feel the sun on my face.
I hug my kids a lot.
I find funny things to laugh at.
I welcome people who come to visit.
I play World of Warcraft.
I keep an emergency supply of chocolate.

How do you dance in the rain?

Going to the Well

2010-03-09T09:14:00.001-08:00

Hello, my cyber fount of knowledge! I have a question for all of you. Has anybody tried any homeopathic remedies for CFS? What has been your experience? Thank you!!!

Tender Mercies

2010-03-05T09:09:00.000-08:00

I came across this on Facebook today. I think there are some of us struggling lately who may want a little comfort. Although it is from my religion, LDS, it is a universally Christian message. I hope you don't mind my sharing it.

After the Storm

2010-03-02T10:43:00.000-08:00

(ramblings)

Such pain in my heart today. I try so hard to endure it well, to hold onto hope, to find joy in the journey. Sometimes it just bubbles out of me. Of course this journey is difficult and painful. Giving in once in awhile doesn't negate my handling the situation with patience and grace. It's simply choosing not to deny the reality of the situation.

This is real suffering. That doesn't mean that there is not merit to it, that there isn't an abundance of joy. It's simply acknowledging that this sucks.

I think I started crying not because I realized that this sucks, but because I felt God acknowledging to my heart that this sucks. Yes, it is hard. Yes, I hurt. Yes, every moment of every day is a struggle. Yes, I want to be more. No. I can't.

Perhaps it's a reminder to be gentle. I can't beat myself up over what I cannot control. Pushing myself over little things is counterproductive, short term, not big picture. They are not as important as I am. Rom tries to remind me of that. Even with my limitations, he tells me, I am important to them. Now, my Father is telling me the same thing. I am important to Him.

I will take it easy today. I will be gentle. I will do one thing at a time. If I only do one thing, that is OK.

Rollercoasting

2010-02-23T14:38:00.000-08:00

I feel like I'm on a roller coaster these days. Last week, I had one day where I felt absolutely fantastic! I woke up in less than agony, I felt bright and almost refreshed. I could barely contain my energy long enough to get my obligatory rests. I never felt that heaviness that haunts my eyelids most hours of the day. The sun was shining and warm. Everything felt so good.

The very next day, I was feeling kinda icky. Not crashed, not wiped out, just not quite there. My body welcomed my rests, my eyelids begged for more. It was annoying!

So I've vacillated back and forth, sometimes feeling pretty darn good, sometimes feeling not quite right. Go figure.

At least, the roller coaster feels more like this:

than like this:

What? Me a Sugar Doll?

2010-02-20T07:19:00.000-08:00

I woke up this morning to find out that Sue has nominated me for the Sugar Doll award! I am to tell you ten things about myself, and then nominate some other deserving bloggers. I have to admit, I'm going to cheat a little -- here are the ten things I told Kerry over at Lemon-Aide.

1. I once licked a snail because my big sister told me they taste like bubble gum.
2. I hiked to the top of Squaw Peak in Utah my freshman year of college. I didn’t know they had a trail.
3. I think chocolate makes the world go around.
4. My husband gets a pedicure with me every month.
5. I went skinny dipping with my best friend at a public beach in the middle of winter.
6. I once caught a baby octopus.
7. I served a Mormon mission in France for 18 months when I was 21.
8. I have a bachelor’s degree in zoology.
9. I have six kids, which is the closest I’ve ever come to using my degree in zoology.
10. I’m working on writing a novel.

I'm nominating:

Forgetful Girl
Lyme Is Crazy
Alyson at Alysons CFIDS Blog

Inch by Inch

2010-02-15T09:27:00.000-08:00

I think ... do I dare say it aloud? ... that I may be getting better! It's that ephemeral something that I can't quite put my finger on. I wouldn't say that my capacity has increased. It's just that, during the day I feel a little lighter, a little clearer, a little more present. My body is making more sense. When I've exerted myself, I feel worn out, and my rests are a little longer than usual. If I've had a quiet day, I don't feel like resting at all (see my last post!), and I have to force myself to stay in bed for half an hour. A few moments of activity aren't weighing me down for days; I actually feel like I'm bouncing back quicker.

Now, when I say bounce back, I mean back to my new normal. I'm still nowhere near where I was before the summer. However, I no longer feel like one of those rock climbers stuck on a cliff with nowhere to go, fearful that if I move I'll slide further down or even plummet to my death. I'm reaching, and I can see tiny handholds, and there is a slow, steady path ahead of me.

Determined to Do Nothing

2010-02-12T08:59:00.000-08:00

I think I'm a smart girl.

I've had CFS for over three years. I know how to manage it, more or less. I know that I have to pace my activity; I know I need to incorporate rest every day.

Most days, I do pretty well. I have two scheduled rests during the day, one in the morning and one in the afternoon. I allow my body to determine the length of each rest period. It typically ranges from half an hour to two hours. It feels good, and I know it is good for me.

But ... there are simply some days when I become as rebellious as a two year old! I know I'm tired. I feel my eyes starting to itch. Maybe my eyelids are even drooping, and I'm fighting to keep them open. But I'm having so much fun! I am enjoying this day and don't want to miss a minute of it, let alone 30 to 120 minutes at a time. I'm an adult, for crying out loud! I want to stay up like a big girl.

Yes, I am an adult, and so I make the adult decision. I take my nap.

Past Fear and Frustration

2010-02-04T10:21:00.000-08:00

I'm not happy with my many negative posts lately, but I understand where they are coming from.

You see, I thought CFS and I had an understanding. I play by the rules most of the time. Then, if something big or important comes along, I cheat! There is a mild punishment afterward, where I am immediately contrite and rest up for a day or two. CFS forgives me, and I'm back to "normal" within the confines of the rules.

And then CFS betrayed me. Or, perhaps it was the last straw. In any case, it stopped forgiving me, and left me sitting in the corner for a very, very long time. No amount of crying or whining has softened its heart and made it relent.

Thanks to Renee's recent post, I am now coming to terms with the fact that I am in a relapse, not a crash. I don't know how long it is going to last. I just know that this is my new "normal," and it's time to adjust my life accordingly.

If I look at it objectively, I can see what happened. Stress is the trigger for my disease. I can see how the unrelenting stress over the summer caused me to fall further down the slope. It terrified me, because I thought, what if I have another episode? What if I fall further? There isn't that much further to go. The next bout will send me to bed with severe CFS for sure.

Well, if that happens, there will be people to take care of me and my family. It is what it is, right? But I can't let fear rob me of hope. I need to continue to tackle this disease the same way I always have, and trust that I will eventually see improvement. Inch by bloody inch, that is.

So, I'm going to change my attitude! I will wake in the morning and force myself to physically smile. They say the physical act of smiling triggers endorphins. I could use some endorphins. I'm going to focus on gratitude, because I have so, so much to be grateful for! Of all the things that CFS has stripped me of, it has taken nothing from me of any real importance. I am loved. I am happy.

Some good news: I don't have to work at all the next three weeks! That should allow me to stick to a routine and consistently stay within my energy envelope. It this experiment is successful, I may not have to go back to work at all. :)

Yeah, That Was Humiliating

2010-01-26T09:10:00.000-08:00

Since my health has deteriorated, my husband has been trying to convince me that I need to start using those motorized shopping carts you see at the store. I agree with him, of course -- my shopping trips are killing me, but using those carts would be like admitting that I'm ... disabled. It would be acknowledging that I'm not doing well and that perhaps I'm not getting better as quickly as I thought I would. Maybe I wouldn't exactly be giving up, but I would be giving in. But surely it would be helpful if I didn't have to walk up and down the aisles, right? Right?

Um, wrong. Yesterday, I finally decided to give it a try. I took my 16 year old son with me to help. He had used the carts before due to an injured foot, so I asked him to show me how they work. I nearly crashed into several people right from the start. I kind of got the hang of it, and we went to the produce department. I sent him scampering in different directions to get the items I needed. I tried to wheel myself to items that were at eye level. It was clumsy and awkward.

And yes, people stare! They stare a lot. Except they do it in a way that they think makes them look like they're not staring. They avert their gaze if you glance up at them. They become very interested in onions.

I was flustered. I passed by items I needed, and then had to back up with that annoying garbage truck beep announcing to everyone that I didn't know what I was doing. I felt like I shouldn't stand up to reach for items on a top shelf, because then people would know aha! I was a fraud! I was a perfectly healthy individual who had no right to be zipping around in one of those things.

I ended up missing a few things that were on my list because I just wanted to get out of there. The entire visit took quite a bit longer than my usual visits, because those things just don't go that fast! I've concluded that the stress from the experience was just as damaging as the exertion from walking the aisles.

Lesson learned.

Getting My Feet Wet

2010-01-23T13:52:00.000-08:00

Well, I said I was going to start taking my writing seriously, and so I've begun! On my writer's blog, I've posted the beginning of a new short story. I would love to have you check it out and give me your impressions -- did the opening effectively "hook" you, were my descriptions effective, did it leave you wanting to read more?

Check it out at:

http://shelli-proffitt-howells.blogspot.com/2010/01/calling-all-critics.html

Clueless

2010-01-22T10:02:00.000-08:00

I have been doing oxygen therapy for over three weeks now. Is it helping? I don't have a clue. I have had flu-like symptoms for almost two weeks -- persistent sore throat, sneezing, sinus pain, nausea. I know that's normal for most people with CFS, but it isn't typical for me. Sometimes I get a sore throat from overdoing it, but it's usually mild and only lasts a short while. Is this that hopeful worsening of conditions that indicates I'm actually getting better? "Die off," or something like that? Or did my kids pass on the actual flu to me, and I just can't get rid of it?

I think clueless pretty much sums me up. I surf the internet incessantly, trying to know what is going on with me. I'm desperate for improvement. I'll try anything. And I do try everything. I take the right supplements. I follow the CFS rules. I convince myself I have a modicum of control. I believe if I just ... then I'll get better. Maybe not all the way better, like I once thought, but at least a little better, right? Right? No. I keep slipping, slipping, slipping, down this nasty slippery slope.

To A Healthy New Year

2010-01-13T11:05:00.000-08:00

I've discovered I don't do the official New Year's resolutions anymore. I don't like lists of things I "should" do. Instead, I find that I ruminate a few days, get a feel for the new year, and decide what is important to me. I've decided that my focus will be on two things.

The first area of focus -- surprise, surprise -- is my health. I think back to the beginning of last year and realize how much I took for granted. I thought I could build up a bit of energy, then blow it all on some "big" event, and then rest up and rebound right back where I was before. It worked, too, for awhile. I was lulled into a false sense of security. Then, near the end of summer, I discovered that I wasn't rebounding anymore. I was in a sustained crash, and no amount of resting was making it better. This level of functioning became my new normal.

With frightening reality, I realized that if I continued this pattern, I could easily push myself into severe CFS. I had been playing Russian roulette with my health. I had been taking one step forward, two steps back, and the next step could land me in bed for good. I have to change.

My new approach is one step back, two steps forward. First, I didn't exercise at all during the months I was crashed. I thought it would help me recover. What I discovered is that I ended up in a lot more pain than I usually am. I recognize that exercising has a price, but I also know that for me it is indispensable. So, I've added light yoga and strength exercises to my daily routine. Yes, it takes up extra energy, but I need to make room for it.

Second, I stopped cooking during my crash. Which meant I ate a bunch of crap for months -- frozen, canned, processed food. I'm sure it added to my overall poor sense of well-being. I'm back on track with preparing menus, buying healthy foods, and cooking when I'm up to it or enlisting my kids' help when I'm not.

Third, I have drastically reduced my activities. I stopped going to church completely, although it broke my heart. No more book club. No more girls night out. No more school events. I rely more heavily on carpooling. I limit shopping to one day a week.

Fourth, I've started a new protocol. I'm trying d-ribose and oxygen therapy. The d-ribose seems to have a positive but not miraculous effect. The jury is still out with the oxygen therapy. If it is doing what it is supposed to do, then I am ridding my body of detrimental viruses and bacteria, which would naturally trigger a healing crisis. In that case, I would expect to see positive results sometime around February. I'll post more information about this, if anyone is interested.

My second area of focus is going to be my writing. I have dabbled with a novel since last year, but this is the year I am going to take it seriously. My goals are to finish my first draft of my novel and to become a published author. To that end, I have created a writing blog to chronicle my journey and to get some critical feedback. You are welcome to visit my new blog at http://shelli-proffitt-howells.blogspot.com/ . And, when I introduce my main character in a few days, I'd love for you to tell me what you think!

I started this blog because I was tired of feeling so alone with this disease. I couldn't have imagined the friends I would discover through it. Thank you so much for your kindness and support. It surprises me that I care so much for people I've never met. I know you are all facing the same struggles I face. You are in my prayers as I wish all of you a happy, healthier new year!

The Antidote

2010-01-10T13:28:00.000-08:00

Hope: v. to wish for something with expectation of its fulfillment; to look forward to with confidence and expectation; to expect and desire; n. a wish or desire accompanied by confident expectation of its fulfillment; something that is hoped for or desired; one that is a source of or reason to hope.

Hope is a dangerous thing. It builds expectations. It shines the light on the past as a titillating promise of the future. It paints tomorrow in such lovely colors. And invariably, if you give it too much attention, it disappoints.

I haven't given up hope. On the contrary, I honestly believe that I will see miracles, that researchers will find a cure, that I will someday be free from CFS. But, I think it is safest for me to keep hope tucked away in my back pocket -- always there, but never consciously acknowledged or relied upon.

Love is the true antidote to despair. A note that says "I miss you." A gift left at the door. An unexpected visitor who can only stay a minute. Words of encouragement, reminding me I'm not alone. Little acts of kindness. Hugs and kisses and that spot right under my husband's arm where I fit perfectly as we watch TV on the couch. These are the things that calm my troubled heart, bring peace to my soul, and remind me that this life ... this life ... is worth living.

Despair

2010-01-05T10:56:00.000-08:00

I don't give in to it often. Just once in awhile, there is a splinter, then a crack, finally a crashing down of the weight of the enormity of this disease. It catches me by surprise. I let myself cry, great wracking sobs if no one is around. It lasts about half an hour, I suppose.

The funny thing is, it doesn't change anything. Just like hope, despair is impotent to change anything about the way I live my life. I still shower and make my bed. I do some yoga. I eat a healthy salad for lunch. I take my supplements and try a new protocol. I nag my son about homework. I go to bed at a reasonable hour.

I do my best with what I've got, because really, is there any other way?

Tomorrow is always a better day.

Congratulations!

2010-01-01T10:19:00.000-08:00

Congratulations to Treya, Sue, Alyson, and Laurel, who each were recognized by Wellsphere in their People's HealthBlogger Awards 2009! It is nice to see our community so well represented. For a full list of the winners, you can go to

People's HealthBlogger Awards 2009.

Cake Wrecks and Charitable Donations

2009-12-11T08:21:00.000-08:00

The wonderful people at Cake Wrecks are giving away $200 a day for the next two weeks to charity. Plus, they are asking their readers to donate just $1 to the charity of the day as well. They are asking people to leave comments to suggest where they should give their donations. I've left a comment asking them to donate to the Whittemore Peterson Institute. I thought others might want to leave a comment, too. This is a wonderful opportunity to help people become aware of the great strides being made in CFS research and to hurry along the research that could ultimately lead to a cure.

http://cakewrecks.blogspot.com/2009/12/catchin-spirit.html

My Support Sytem: Are You In or Out?

2009-12-07T10:58:00.000-08:00

You are not in my support system just because you love me.

I've noticed that the people who love me fall into three general categories. (I'm very left-brained. I categorize.)

First, there are the people who believe I am sick but think I'll get better. These are the ones who approach me with the worried furrowed brow, pat me on the shoulder, and ask with pity, "How are you doing today?"

Second, there are the people who believe my illness is psychological. They think that if they pretend nothing is wrong with me, I'll eventually catch on and agree with them. They are the falsely cheerful, "Hey! It's good to see you! I'm glad you're out doing something! You look great! ... ! ... !"

Third, there is the rare and amazing gem -- the person who understands. They believe I am sick with a real disease. They recognize that it is called "chronic" for a reason. They accept that it's not going away. They realize that I now have limitations and need to alter my activities and the way I live. They embrace my new normal and find a place within it.

These rare gems are my support system. My husband is my greatest and most reliable support. Because of him, it doesn't matter how small the rest of my support system is. Without him, I would certainly become depressed, go to bed, curl up in a ball, and stop living.

I don't want anyone to think I'm pointing the finger at them. If you're not in my support system, it is my fault. I've discovered I'm not very good at communicating this disease to other people. I've seen so many puzzled looks when I've tried!

So, if you want to join my support system -- follow my lead. If I am with you, it is because I am well enough to be there. Embrace the moment and enjoy it for what it is. Make me feel normal, like the same person you've always loved, but lower your expectations and be flexible. Notice if I seem to start to "fade," and make it easy for me to leave or take a rest without feeling awkward. Don't expect me to be too reciprocal. And don't forget me.

Being Thankful

2009-11-27T09:53:00.000-08:00

Well, I haven't been blogging much lately. I'm afraid I've been in survivor mode lately, curled up in a figurative (and sometimes literal) fetal position. But I couldn't let Thanksgiving pass without a comment!

I love the fact that Thanksgiving comes before Christmas. Pondering the many things I'm grateful for puts me in the right frame of mind to enjoy the true spirit of Christmas. You may think that CFS has made it a little more difficult for me to be thankful, but it's really not true. If anything, it has made it easier.

CFS has given me many small blessings and one great gift. I have, throughout my life, had great burdens that I carry. Because of my faith, I do not fear death -- in fact, I have often yearned for it. I've thought how wonderful it would be to leave behind the pain and suffering of this life and return home to my Father and my Savior. At times, the only thing that has kept me here is the feeling of six pairs of small hands and one pair of large, gentle hands holding onto me like many balls and chains. Oh, I've wanted to go! But what would happen to them? I've begrudgingly stayed.

The onset of CFS has taken life away from me, little by little. And I've come to realize -- how could I have taken so much for granted? Every little morsel I can enjoy now is so sweet to me. There are a million tiny moments full of life that I never paid attention to before. A hug from my tween, a kiss on the top of my head from my big boy, cuddling on the couch with my husband, stepping outside to a warm, clear, star-filled night, waking up to blue skies and warmth, a thank you from my big girl at college, my boys climbing into bed with me, the little ways they all try to make life easier, better, happier for me.

I believe that this will someday be over. One day, I will no longer have CFS. I'll be able to engage more in life and her bountiful activities. I will be careful in what I choose to do with my precious energy. I will not waste it on things that do not bring me joy. I will not clutter my life with the unimportant. I will savor the moments. I will stay as long as God allows, and when He finally calls me home, I will leave this life with one last, fond glance over my shoulder at this beautiful adventure.

People's Health Blogger Awards

2009-10-27T10:04:00.000-07:00

While visiting Sue's blog today, I noticed that she is up for a People's Health Blogger Award. I decided to vote for her, and I am putting a "Vote for Sue" widget on my sidebar. Sue's blog is one of the first I found when I discovered I had CFS and started blogging about it. I was so new and lacking in knowledge when it comes to this disease! Sue was always there to open my eyes and show me different paths to understanding just what was going on with me. It was from her that I learned about post-exertional malaise, orthostatic intolerance, and LDN. And she seemed a "success" story. Even though she still has CFS, she seems to manage it so well, and she still has a life! That is what I aspire to. So, in a way, I would say Sue has been my CFS mentor, and she has become a very understanding friend. I wish her the best of luck!

The Fear

2009-10-20T11:01:00.000-07:00

I've thought about this ever since I watched Laurel's video on Treya's blog. One thing the stories about those severely affected by CFS seem to have in common is that they were moderate to begin with, but they pushed too hard and ended up in a severe crash they never came out of. I can't help but wonder -- is this the slippery slope I'm destined to head down as well?

For awhile, it seemed like my CFS had stabilized. I was functioning at about 50%. I knew what my limits were, and I largely stayed within them. Sure, I cheated once in awhile, but I rested up after and rebounded rather quickly. It made me feel like I was "getting better."

August pushed me way beyond my limits, and I fell to about 30%. I followed my recuperative routine. I added extra rests. I put further restrictions on my activities. I cut back on my nearly non-existent exercise. I learned and regularly practiced deep breathing and meditative exercises. And I haven't budged. Like Sue said in her blog today, I wonder if this is my new "normal."

It's funny how we grasp around, trying to convince ourselves that we have some control over this disease. I take a gazillion supplements without any evidence that a single one does any good. I pace, I rest, I modify my diet, I destress. I've become a ghost of who I used to be. And I tip-toe around thinking that if I don't disturb it, CFS will somehow leave me alone.

Well, I'm still a wife and still a mother of six and still co-owner of a struggling business. I am at the mercy of LIFE. Will the next blow be the one that does me in?

Hanging on to Dear Life

2009-10-11T11:56:00.000-07:00

Do you remember that children's game, Crack the Whip? You all hold hands, and the leader runs around, pulling everyone along. It's quite fun, unless you're the one at the end of the line. I feel like life is playing Crack the Whip with me, and I'm just trying to hold on!

I did something crazy this year. I signed my two younger boys up for soccer. In my defense, I signed them up in May, when I was feeling relatively well and expected to be feeling better by September. I didn't realize I'd be having a downturn in August that wouldn't relent for quite some time.

So, now here we are -- my boys have soccer practice Monday, Tuesday, Wednesday, and Thursday afternoons. We have games on Saturday. Can I just tell you how much they love it? My youngest son had never played before. He was so nervous his first day of practice! By the end of the hour, his eyes were shining and he told me, "I love it!" He is ready for practice half an hour before we have to leave. He asks me, "Is it time to go yet?" every five minutes. My older son isn't as fond of practice (because you have to run). But he loves playing in the games! He scored his first goal yesterday, and he was so proud! He is quite a natural at it -- he isn't intimidated at all, he has a good sense of the field, and he has some pretty good moves.

How could I not give them this little piece of normal childhood? Yes, it's killing me, and I don't have time for anything else (shopping? cooking? cleaning? bah, who need's them!), but I had to do it. I just had to.

I'm still working Tuesdays. My husband and I both wish I didn't have to, but there are no alternatives in sight. My husband, wonderful man, has taken on so much to ease my burdens, he is at near breaking point. If he worked my day, too, that would mean six days at work a week, plus the extra duties at home. We can't afford to hire someone else, especially when the people we've tried in the past have been so ineffective.

My oldest son was in a bike accident a couple of weeks ago. The front wheel of his bike came off, and he hit the street at relatively high speed with his face. He suffered lacerations, abrasions, a broken tooth, and a broken nose. Luckily, he was wearing sunglasses, because they were destroyed but saved him from damaging his eyes. My husband was at jury duty and I was at work the day it happened. Of course, I closed down the store and spent the day with my son in the emergency room. He looked so terrible -- we jokingly called him a zombie. I thought I was holding up pretty well for him. But, when my husband finally got back and relieved me at the hospital, I broke down completely sitting in my car in the parking lot. Boys! If they don't kill themselves, they'll kill their mothers.

I tried to go to church today, even though I knew I wasn't up to it. I love the feeling I have when I'm at church. I stopped to talk with a friend, and half way through our conversation, I was crying (I'm an emotional wreck on my bad days!). I stayed for about 15 minutes, just enough time to take the sacrament. While I was there, I saw familiar faces and the familiar routine of people going about, serving, teaching their classes, taking children to the bathroom, etc. Oh, how I miss it! I ache.

So, I'm just hanging on right now. Barely hanging on.

Visible Illness

2009-09-17T20:03:00.000-07:00

Well. I've decided to come out of hiding. I am going to post an actual picture of myself for my profile picture.

First of all, this is the picture I chose for my Facebook profile -- I think it's a good idea to show that I am a happily married woman on a social networking site, don't you think?

Second, this is the picture I chose for my family blog. I think it shows my joie de vivre, kind of fun and sassy, like me. I really do love my family and my life.

Finally, in spite of protests from my vanity, this is the picture I am choosing for my CFS blog profile:

The reason I chose this picture is because CFS is not an invisible illness. It is visible in the dark circles and lines that cover my face. It is visible in my furrowed brow when I'm in pain. It is visible in my hunched shoulders. It is visible in my gait and pace when I walk. It is not an invisible illness.

I have a few theories on why people don't see my illness. First, I think that many people are too caught up in their own "invisible illness" to notice my pain and suffering. Life weighs heavily upon all of us from time to time. It is difficult, and sometimes frankly impossible, to notice others' pain when our burdens are overwhelming and hard to bear.

Second, I think that many people just can't stand the thought of a friend or loved one having to go through this ordeal. It is scary to think that I will never get better. I've dealt with this kind of denial. To not have "me" back again? Ever? Surely, that is not something I embraced easily. How can I expect the people I love to believe it? No, I forgive them for holding on to the belief that this has to be something else, something the doctors missed, something that can be cured.

Finally, I think that there are just some people who won't see because then it would prove them wrong. They would be forced to look in the mirror and see someone who judges harshly, who believes the worst in people. They would see dark holes where their compassion and humanity should be. It would be an ugly image staring back at them. I pity these people most of all.

Good News

2009-09-08T11:43:00.000-07:00

A couple of good news tidbits:

First, I finished the September issue of my Fatigue Busters newsletter and sent it out! That had been hanging over my head for a week.

Second, I am feeling infinitesimally better! I have to warn myself that I am not back to baseline yet, so I need to ease into it gently. I have these bursts of energy and just want to DO something!

Third, my blog AND my website have both been listed on Worldwide Association for ME/CFS Awareness and Research (WAMCARE)'s website!

http://www.wamcare.org/websites.html
http://www.wamcare.org/bloggers.html

Many of you are listed on the bloggers list, as well! Congratulations!

Catharsis

2009-09-02T13:50:00.000-07:00

Ah, as you all know, I have been in the middle of a nasty crash for some time now. It has, quite frankly, scared me. I had been used to bouncing back rather easily from stress-related and exertion-related mini crashes. I expected the same from this one... but it didn't exactly go that way. So, relying on many of your own experiences and suggestions, today I did a little personal exploring.

I sat down to write about my current stresses to confront the emotions surrounding them. There are several swirling around my psyche these days -- back to school, soccer for the boys, a new school for my struggling son, the economy and our new business, a messy house. But as soon as I started writing, the only thing that my pen would allow to find its way to paper was my daughter who is now off to college.

I am happy for her. I am proud of the young lady I have raised. I feel she is ready for this next step in her life. I know she will excel. I know she is in a good place. I am excited to see where she takes this adventure and who she chooses to become. I love her so much.

Then, the image that came to my mind was not my teenager who just left home, but my baby as I first held her in my arms. I thought about our special relationship as she grew to be a toddler. I remember our wonderful friendship and how everything about her was delightful to me. I loved being a mom! I caught myself thinking, "I've never been happier than during those early days of motherhood."

I broadened the picture in my mind and thought about what was going on in my life back then, and I realized it was not an easy time for me. It wasn't the bliss I was painting it to be. I, like many others with CFS, had been abused as a child. Having a child of my own brought up suppressed emotions, and I began dealing with the issue for the first time ever. It was beyond painful -- it was excruciating. There were times when I thought I would lose myself in the pain of it all and just stop being. My husband was remarkable, loving, and supportive ... but it was in the love of my little girl that I found solace and relief. Holding her, loving her, having her love me back unconditionally -- it gave me a reason to live when I really didn't want to anymore.

I realize how much I have relied on her over the years. When I went through a horrible depression, she took on extra responsibilities to help around the house, even though she was only 8 years old. She has always been able to reason with her brothers and sisters to restore peace in our home. She treated her brothers and sisters like friends, inviting the younger girls into her room for "sleep overs" and including her younger brother in her own circle of friends. Since I've had CFS, she has helped rally the kids to do their chores when I was too exhausted to nag any longer, and she has run numerous errands for me in her car.

I realized that my reaction to her leaving home hasn't been fear for her, but rather fear for me. Even though I am years into the healing process, it terrifies me to think that IT might rear its ugly head again, and she won't be here. It feels like someone took away my security blanket in the middle of the night while I'm still afraid of the dark.

I'm not that little girl anymore. I'm a grown up, and grown ups don't need their children to take care of them (at least for another 30 years or more, I hope!). It's time to start using my adult coping skills and let my girl go.

As I write, there is a storm brewing outside. A fierce wind is blowing leaves and debris into the roads, and the temperature has dipped 20 degrees. Instead of smelling the smoke from the recent fires, I smell the fragrance from the flowers in my yard that have been disturbed by the upheaval and dust mixed with a trace of moisture. The clouds are dark and enigmatic, moving closer. There's a crackle on the radio that tells me lightning has started nearby, and I hear distant thunder. I love this weather! It sweeps away the heavy 100+ degree F days that have been lingering too long. Everything is fresh and new. It mirrors my soul.

Adrenaline Junkie

2009-08-26T12:07:00.000-07:00

I think I thrive on stress. Not the normal background soundtrack to my life kind of stress, but the in the moment kind of stress. Like when I speak in front of a large group of people, or I race to complete a deadline, or I handle a crisis fairly well. It's almost like I feel high for an hour or two after!

And then I crash. Muscle fatigue, extreme exhaustion, brain fog, headaches -- you're all familiar with it.

I think I've been cycling in and out of it for weeks now. I wake up in the morning, and I'm hit with the worries of the day, sending a rush of adrenaline through me that won't let me doze anymore. I scurry around getting the kids off to school, and then when it quiets, I rest. The rest brings on a crash, and I can barely get out of it! Yesterday, I actually had to sit down in the shower (I'm usually higher functioning than that). I called my husband and started crying before he even said hello. Not good.

Then it's time to pick up the kids and shuttle them to various activities, and I'm living on adrenaline again. We get home in the evening, and I have to ask one of my teens to put chicken nuggets in the oven for me. I try to interact and help the kids get their homework done or get ready for the next day, but all I can manage is a little half-hearted nagging. By the time bed comes, I collapse.

It is finally dawning on me that perhaps adrenal fatigue is a part of my CFS! (Duh.) Does anyone have a way of breaking out of the stress cycle? Is there a way to "talk yourself down" from an adrenaline high? I'm interested in opinions and ideas!

Making Connections

2009-08-20T11:28:00.000-07:00

Today I've had my own "Aha" moment.

I woke up feeling surprisingly well. I looked in the mirror, and I didn't see a zombie looking back at me. I was feeling restless during my first rest this morning. I felt ... better!

What made all the difference in the world? My oldest son (15 yo) had been on vacation with another family for 3 weeks, and he just got home yesterday.

Being a busy mom of five other kids, I didn't even notice how much I was worrying about him! He didn't have phone service or internet access most of the trip. He was able to text his sister a couple of times, and when he did, he sounded homesick. This was supposed to be a great adventure vacation -- crossing the US, visiting the Mall of America, Mount Rushmore, LDS church history sites, the Grand Tetons, Yellowstone Park, and more. There was mountain biking and hiking and camping and river rafting. It was the chance of a lifetime! He had a great time, but missing us all put a damper on the trip. And the whole time, I worried.

So, he got home yesterday, while I was working at the store. He spent the entire afternoon with his father, getting our truck fixed. They had a fun time entertaining an 81 year old homeless man while they waited for the truck. Then, he took off with his sister and their best friend and did "stuff" for awhile. After work, my husband took me out to dinner, like he always does, and then my son joined us!

He was so cute! He ran through the restaurant, jumped up onto the bench in the booth, and gave me a huge hug! He kept us laughing as he shared all his stories from the last few weeks. It was a wonderful dinner, and I was so happy to have him home. He took off with his friends after dinner, but came into our room before bed and chatted some more until after midnight.

His favorite sarcastic remark before his vacation was "I hate this family!" He has sworn to NEVER say it again, lol!

My next big stress is sending my oldest daughter off to college on Sunday. I hope I'm not a wreck like I was with my son. I don't think I will be. She is ready, I know. She is such a smart girl, and she has a super fun personality. She is absolutely darling, so I'm sure there will be plenty of boys to show her some interest. I know she'll excel in her classes, because she has the skills to do so. I feel like this is going to be such an amazing growing experience for her.

I've spent so many years making room in our family and in my heart for each new baby. I wonder what I'll do now that I'm beginning to send them off? I wonder how our family will deal with shrinking, not expanding. Anyone have any good stress remedies?

Rebel, Rebel

2009-08-15T12:05:00.000-07:00

I know I'm dating myself here, but this was a really popular T-shirt back when I was a teen. I am relating to this little mouse today.

I had seen so much progress, I grew cocky. I was so busy planning my recovery and the many wonderful things I was going to slowly introduce back into my life that I didn't notice the creeping crash. My body warned me, it certainly did. I knew that I couldn't continue to cheat CFS like I was and get away with it. I had been lulled into a sense of security because I had rebounded so well following a few other periods of high activity. I thought I would be fine if I just took it easy again for awhile.

So, after a serious CFS beat down and tears of defeat in my husband's arms, I am humbled. I am done rebelling. I'm giving in. I am not going to fixate on the external factors that I can't change -- the responsibilities and stresses that are the nature of my life. Instead, I am going to focus on what I can change. I'm adding another rest period into my day, and I'm going to be more consistent with my yoga. I'll work on stress-reducing techniques. I'll remember how to say "no."

It never gets easy admitting that you are ill.

To Be, or Not To Be ...

2009-08-13T13:57:00.000-07:00

I'm mad. Really, freaking mad. I know it is not uncommon for people with CFS to feel anger. I know it is one of the stages of grief, and we have, indeed suffered such a great loss. But I thought I was passed that. I didn't expect it to sneak up on me again.

My husband and I were planning on taking the kids to see "Up" at our local theater this weekend. Today, he calls and tells me that we need to go tonight, because it looks like it will no longer be playing by this weekend.

I worked yesterday. Also, my 7 year old son came into bed with us in the middle of the night last night because he was feeling sick and couldn't get to sleep. It took three hours of scratching his back, smoothing his forehead, chatting a little, and snuggling before he finally fell asleep. Today is supposed to be the day that I stay home, take it easy and recuperate.

Do I go with my family, or let them go without me?

So, I guess the question isn't really "To be, or not to be" (no need for suicide hotlines at this point, but thanks for the thought!), it is "To be, or not to be ... what?" What do I choose to be?

Are you like me? Do you have this intuition that tells you exactly what you need to do to recover? I've put all the pieces in place -- proper sleep, proper nutrition, supplementation, rest periods. Pacing. I know that the only thing left for me to do is to always keep within my energy boundaries. No more boom-bust. No more push-crash. No more two steps forward, one (or two or three) steps back. I just need to always stay within my energy boundaries.

What do I choose to be? An invalid, or a wife and mother and business owner? Do I really have a choice? I don't think so. I am a wife, a mother, and a business owner. So, becoming healthy again isn't really an option.

And I'm mad.

Exercise Experiment #1 Results

2009-08-10T18:32:00.000-07:00

I put my theory to the test this weekend. Since my sister was in town, I took my kids swimming at my mom's house Saturday. The water was the perfect temperature! It felt good floating around a bit, but it wasn't quite enough. I decided to try just a couple of laps. I slowly crossed the pool and back -- leisurely, nothing too strenuous at all. I rested for awhile and made sure my heart rate was back to normal. I crossed the pool again; rested; then again two more times, resting in between. My body felt so good! My muscles loved the feeling of stretching and working just a little bit. It was wonderful. I came home and slept like a baby.

The next day, Sunday, my husband took all the kids to his sister's house and left me all to myself. That would be a treat on any day! But right after my excursion to my mom's it was wonderful to be able to completely relax and rest and do absolutely nothing. I felt pretty good through the afternoon, and then wham! Classic post-exertional malaise! Even after all that resting, I was exhausted. I knew it had to be because of the swimming the day before, because I obviously had done nothing to tire me all day.

In one sense, it was really good -- I've never been able to see much of a correlation between my activities and post-exertional malaise before, because I'm always busy and I often overdo things. I can never see a cause and effect relationship. This time it was crystal clear.

The bad news, of course, is that I have to be careful with any forms of exercise. (You already knew that, didn't you? I'm just a little hard-headed, I suppose.) I crave exercise, and I feel like I need to find a way to fit it into my CFS life. I'm going to keep searching for activities I can do without making things worse. I know that yoga is well-tolerated, so I'll work that back into my day again. My next experiment will be to see if I can tolerate tiny doses of aerobic activity broken up throughout the day -- maybe two minutes here, two minutes there -- until I can work up to 10 minutes a day total. (Dream big!)

I'll let you know how that goes!

Houseworkaphobia

2009-08-03T12:34:00.000-07:00

I am afraid to clean house.

There is actually a rational explanation behind my irrational fear of housework. During the first year of CFS, when the doctors couldn't tell me what was wrong or what to do to fix it, I did what we typically do -- I pushed myself to try to keep up with my "normal" life. As a result, I was in a constant, 24/7 zombie mode. The fatigue and brain fog were so severe that I couldn't maintain a decent conversation with anyone. I spent hours on the computer, my only respite. My family thought I was addicted. They would come in and interrupt me, trying to interact. They would say something to me, and I'd have to stop, look them in the eye, and still ask them to repeat themselves three or four times before what they were saying made any kind of sense to me. I would still be on the computer when my husband came home from work at 9 pm. I would be desperate to get some sleep, but I was so tired, I couldn't even find the energy to get up and walk upstairs to bed. It was bad. It was ugly. My family suffered.

Then I discovered I had CFS! And pacing! And I started to live within my "energy envelope". Sort of. I'm still working on that. But, anyway, the brain fog began to clear for moments at a time. I could actually talk to my children. And parent them again. It was difficult, because they had become quite feral and did not take kindly to the retaming process. Nonetheless, I found the strength and energy to stick with it, and we are becoming a normal family again. I actually played a board game with my children the other day. It was amazing.

So, my great fear is that if I start doing housework again, I will no longer have energy left for my family! I need to keep an energy reserve for those unexpected moments that require me to parent. I don't want to be unavailable to them again because I was wiping the kitchen counters, or scrubbing the toilets, or sweeping my front porch.

Still. I want to be able to bless my family by creating a more peaceful, inviting home for them ... and me. I'm in the middle of reevaluating how I spend my time. I am coming to realize that too much time on the computer is as harmful as overdoing it physically. I need to start "switching" activities, and maybe I can add a few minutes -- 5 to 10 at a time, maybe -- of housework to my day.

I am going to face my fears and start FlyLady(FlyLady.net) this month. I discovered FlyLady when I was pregnant with my youngest son. Her program helped me dig out of disarray after months of morning sickness that left me unable to do anything. I realize things are different this time, so I'll have to modify it and keep it within my abilities. But I think I can do this.

AND keep my cleaning lady. ;)