The Duel

I have two opposing symptoms that love to drive me nuts! First of all, I'm sensitive to cold, and I feel cold ALL the time! I wake up with frozen fingers and toes. I'm chilly all day long. I need the windows closed from early afternoon on. I'm cold!

However, I also have night sweats. A couple of times every night, I break out in a terrible sweat. This leads, of course, to the nightly duel. I start out comfortably snuggled under the covers as I fall asleep. Then, I'm tossing them off trying to get relief. This leads to shivers and reaching for the tossed blankets ... until I can't stand them and they're off again!

Is this why I never feel rested? (One of the many reasons, I know!)

Weary

Sometimes, I wake up in the morning, and I already feel weary. I lie in bed, watching the day's tasks dance through my mind, and I cower. How can I possibly face each one of those, feeling like I feel right now? Maybe I should stay in bed. And I do. For half an hour, maybe an hour. But lying in bed makes my back ache and my neck and shoulders hurt. I know that a little yoga will feel good. Can I at least tackle that? Of course, I get started, and like a boulder rolling downhill, the tasks come at me and I get them done somehow.

This disease is like an abusive boyfriend, and I'm the stupid girl who is crazy enough to stick with him. I walk around on eggshells, afraid to do anything to piss it off. Then, when it hits, I blame myself. I shouldn't have walked to the mailbox today. I should have had the kids help me bring in the groceries. Why did I do that extra load of laundry? I shouldn't have lingered fifteen minutes after my show was finished before going to bed. Normal things that normal people take for granted, and they can't believe the consequences are so severe. It's not right, they think. Why don't I just snap out of it, get over it?

Ah, they just don't understand. I would leave him if I could. Really, I'm not getting some kind of sick pleasure out of this. I would leave in a heartbeat! I just don't know how.

Working Girl

I'm back in the store today. Once a week, I give my husband the day off and I cover for him here in our mattress store. We chose Wednesday, because it is typically the slowest day of the week. He's the expert; I'm just holding down the fort for the few unlucky people who happen to wander in while he's gone. (I'm actually pretty good, considering I'm a complete novice in the mattress industry.)

Not surprisingly, my one day work-week poses a problem for me. It takes me out of my normal routine, and it requires more exertion from me than I am used to. You would think that with all these mattresses around me, I'd be able to take advantage of them and still get my rests in. However, I'm a bit paranoid. I just think it would be so unprofessional for a customer to walk in and find me napping in the corner.

Today, I think I've finally figured out a reasonable compromise. My husband bought a funky ergonomic chair that lets you recline substantially. I think I can get several 10 minute rests during the day here at my desk using that chair. I tried it once this afternoon, and it was really refreshing.

Any suggestions on how to make it through work without causing too much damage?

Surrounded by Wonderful

Today I am celebrating my support system! I've been reading a lot lately about the horrible stigma that comes with CFS, and I am so happy that I have wonderful people in my life who not only believe me but will do anything they can to help me recover.

First of all, let me say that one of my largest conundrums has been whether or not I should be going to church. Our church starts at 9 am. There are three meetings that are about an hour each: first, a meeting with the family to take the sacrament, then Sunday School, and then a meeting with the women. I teach once a month the third hour, when just the women meet together. I love church! I love the things that are taught -- I feel fed when I come home. I love teaching, especially when a really good discussion gets going. I feel enriched. I love my friends who are there. But (or should I say BUT), it wipes me OUT! It throws my schedule off completely. I usually come home and nap for two to three hours, which means I don't get to sleep until late that night. I have to pace well on Saturday to conserve energy, and then I have to take it easy Monday and Tuesday to recuperate. I feel like it is physically sabotaging my recovery.

So, my first celebration is my wonderful husband who came up with a plan. After watching me struggle with myself for a few months, he suggested I try to come only for the third hour. I can still take the sacrament first, and then slip in to the women's meeting. I won't have to kill myself trying to get up and ready by 9 am, and just one hour should definitely be manageable. I'll still stay home on those days when I'm not up to going, but this should keep me from feeling alienated and cheated out of something I really enjoy.

Second, I am celebrating those wonderful friends from church! I was absolutely miserable on Sunday. It was one of those days where I shouldn't have gone, but I wanted to be there, so I forced myself to go, and then realized I should have been more judicious. After the meetings, a couple of my friends asked me what they could do to help. You've been there, right? What do you say? I told them there wasn't really anything to do, of course. But they didn't stop there. They pressed me, saying there had to be something that would help. I joked that they could discover a magic pill that would make my kids keep up with their jobs. That led to more probing and I eventually admitted my deep, dark secret: the house is a mess. Not just the clutter that builds up when you have kids that aren't keeping up with their jobs, but two years of filth that accumulates when you can't do the big jobs like mopping the floor and washing windows and cleaning the oven and scrubbing the tub. And, just like that, they said they were coming over to clean my house.

Have you ever done that? Have you ever let someone help you ... I mean, really help you? I am scared and in awe.

Coming Up for Air

I feel like I'm finally coming up for air! The past two months have been draining. I overdid it around my birthday ... learned a lot from that. It seemed like I wasn't bouncing back very quickly. Then the time change hit, and I just didn't adjust very well to it. Again, I learned a lot. I've been extra gentle with myself, and I think it is beginning to pay off.

What is this strange emotion I'm feeling the last two days? I think it is Hope. Do I dare say it out loud? I am hopeful that I am beginning to recover! I'm not expecting to wake up one morning and find CFS is gone, like some bad dream. I just feel like my understanding is growing and I am putting good habits and practices in place and I am moving toward getting better. I believe that I can, over time, gently push back the limits of this strange disease and find some breathing room. Some room to live.

The Results Are In

ATTENTION SHELLI -- Read this post the next time the time changes!!!

Throwing off my schedule is WAY better than getting myself into a sleep deficit!!!

Yesterday was awful! I felt miserable all day long. I certainly tired myself out by bedtime, but it didn't help me fall asleep any better. I definitely slept hard all night; I remember waking a few times, but I went right back to sleep afterward. I didn't wake up until 9:30 am today -- that was a full 12 hours (mildly interrupted) of sleep! And, I can still feel the deficit. I'm going to need to take it easy for awhile longer, probably through the weekend.

How I wish some of you could have been a fly on my wall at 6:30 am yesterday morning to buzz in my ear, "Don't do it, Shelli! No, don't!"

On the happy side: I had such a nice day with my kids yesterday! My 8 year old son was showing me how to be an Avatar -- he is so creative, I just laughed at his antics. My 17 year old daughter found a way to get me talking about when I was a teen. My 15 year old son came in my room right before bed (my bedtime is earlier than his, how funny is that?). He was in a hilarious mood, and I really enjoyed him.

AND -- I'm on my way to the spa in a couple of minutes! Full massage, salt scrub and body wrap. Once again, thank you to the world's best husband ever!!!

Daylight Savings TORTURE Part Deux

I'm posting so I can remember what to do the next time the time changes.

Today, I tried something different. I woke up at 6:30 am and couldn't get back to sleep. So, instead of tossing and turning and finally dozing until 10 am, I decided to just get up.

I am super drowsy and dragging all day! My rests were barely helpful, and I woke up with the infamous eye twitches that tell me it's not so good. I have a couple of errands to run this afternoon. I'm keeping dinner light, and then I'm going to bed an hour early.

I'm a scientist at heart. Here's the experiment: will toughing it out and feeling sleepy all day help me to sleep better tonight and adjust any quicker? Or would indulging in the mornings help me transition a little gentler, in spite of the chaos it creates with my schedule? Ah, we will see. We will see.

PS

I thought this was too funny -- when I went up to take my rest, I discovered that I had already made my bed! I wonder when I did that?

I Hate the Time Change!!!

I hate the time change! I'm even going to go out on a limb and say that I personally believe it CAUSED my CFS! (OK, maybe the dates don't really match up, but it is still my official scapegoat.)

I followed my normal routine yesterday: took my rests when I was supposed to, went to bed at my normal time, fell asleep reasonably fast. I think I slept pretty well last night.

Then, I woke up at 6:11 am. A full 39 minutes before I need to. I couldn't get back to sleep! I got the kids up at 6:50 am, and I thought I'd slip back to sleep then (my husband takes over from there). Nope -- still up at 8 am. I'm about to cave and get up, when I finally drift back to sleep. Then in and out of sleep, not peacefully, until it's 10 am, and I have to drag myself out of bed or I am So Out of Luck (that's what the acronym stands for, right?)! To heck with yoga and even making my bed. I'll worry about the bed after my first rest.

Ugh! I am dragging and miserable! My eyes are twitching already -- never a good sign! I have been typing nonsense words while trying to get this post out; I've had to go back and erase three or four already. I feel a zombie day ahead of me. I can hardly wait to get to bed tonight. Just nine and a half more hours to go!

The Price of Overconfidence

I was thinking about the phrase "bill of health" and it made me think of the tab I ran up yesterday.

1. I worked at the store all day yesterday. I only had two customers, so it was pretty quiet. I realized by the end of the day, I still felt pretty good! I was feeling pretty confident. (cha-ching)

2. I then went to my book club. I love my book club! The books we read are so interesting, and even if I didn't like the book that month, the discussions are always so fantastic. Unfortunately, we had a small group, so the discussion was a little tepid this time. It wasn't as fun as usual, but we got out of there a little early. I was still feeling pretty confident. (cha-ching)

3. I came home and unwinded by curling up on the couch and watching "Survivor." It's pretty mindless entertainment. I was thinking I should probably get to bed when it was over, but I convinced myself to stay up for "The Office" next. Then, I stayed up for "30 Rock," even though I don't really even like that show very much. A little voice started a warning. Regret was waiting on the sidelines, tsk tsking. (cha-ching)

4. I thought I'd put my post-exertional malaise theory to the test. I was still awake when my daughter came home late from work, so I chatted with her about how her day went. I ended up getting to bed about two hours past my usual time. (cha-ching)

And ... boy am I paying for it today! I was lying in bed dreaming this morning that it was getting later and later and I needed to get up, but fatigue weighed so heavily upon me that it was like I was in a coma and could not even force my eyes open to check the clock. I was finally awakened by the telephone ringing at 10 am. On my good days, I'm up at 7 or 8 am after nine to 10 hours of sleep. I languish in bed for a little while, but I don't feel sleepy. I panic if I'm not up by 9 am; that usually means difficulty getting to sleep that night. This time, it had been over 11 hours, and I still felt groggy. I was achy all over, I was dying of thirst, and there was just a hint of a sore throat. I wasn't even up to my morning yoga, and I didn't make it into the shower until noon.

Thank goodness it's Friday! At least I can get all the rest I need to bounce back tomorrow without having the alarm going off for school. I hope I'm feeling better, because Vons is having a really good sale tomorrow, and I would like to be able to feed my family.

Post SEX-Ertional Malaise?

(Hmmm ... couldn't find an appropriate picture. For the best?)

My husband and I were considering this question. Could ... intimacy cause post-exertional malaise? I mean, it is certainly the most aerobic of any of my current activities. Could it be sabotaging all my careful efforts to pace and monitor my activity levels?

Of course, the benefits are substantial: it relieves stress; it boosts immunity; it burns calories; it improves cardiovascular health; it boosts self-esteem; it reduces pain; and it HELPS YOU SLEEP BETTER! (from WebMD)

Maybe it's like dark chocolate when you're on a diet -- it's so good for you, the calories just don't count.

Perhaps I should just keep an awareness in the back of my head and try to adjust my other activities to compensate. I really don't think I'm going to formally "pace" this one; too much scheduling takes the spontaneity and fun out of it.

Like I told my husband the other night, this is one thing I am not willing to sacrifice to CFS. The response from my so very supportive husband? "Me, neither."