Balancing hope and acceptance while living with Chronic Fatigue Syndrome.
Followers
Abundance
“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach
Gabriel, age 8, was pondering the other day and told me, "You know what's weird, Mom? Even though you have chronic fatigue and are really tired all the time, you're still really nice!"
Gavin, age 7, took in some bottles to recycle for Earth Day. As a reward, they gave him a coupon for a frosty at Wendy's. He told me he was going to bring in another bag of bottles to get a coupon for me -- "Because they have chocolate, and chocolate is good for your chronic fatigue!"
Alright, I know that many of you are interested in helping out for ME/CFS Awareness Day coming up on May 12th. Here's a really simple thing that you can do to be an activist now! This is from Renee's blog:
"Please visit Kerry at Lemon-Aide to find out how you can advocate for more CFIDS/ME research by the CDC. They are holding a conference on CFIDS April 27th. It only takes a couple of minutes to go to the site she lists, fill out the form and send it off to the CDC. Thank you for making your voice heard. "
I did this, and it is set up so it only takes a few minutes. A few minutes to make such a difference! Please make it worth your time.
First of all, I am very happy with the progress I am making on my website! I wanted to do one page per week (resulting in at least 52 pages by the end of the year), and I'm already at 39 pages! More importantly, I just completed a section for ME/CFS Awareness. Please take a look and tell me HONESTLY what you think. I can always edit it if you find any flaws or have suggestions, which I would appreciate. You can find it here:
I will be using this information in an e-mail campaign I am trying to get my courage up for. I'm going to send an e-mail to all my friends, family, and acquaintances that explains my situation and asks them to do three things: 1. Read the "Understanding CFS" article on my website; 2. Donate $1 to CFIDS.org; and 3. Forward the e-mail to everyone they can. I have given myself a deadline of May 1st to do this, so I can tweak the website a little more and compose the e-mail. Really, I'm just nervous, so I'm buying time. If I get my courage up, I'll do it earlier.
I'm about on track with my recipe blog, The Flagging Chef (see sidebar). I have 86 recipes, and I have a slew more that I'm ready to post. I've put together three weeks of recipes and shopping lists, and I'm working on one more today. That should give me a full month's worth of healthy eating without all the trouble of planning.
I've started a new series of stretches that is helping with my chronic pain. I'm also going to start a tiny bit of rebounding today before my rest period. I'll keep you up to date with how that is going. So, I'm giving myself a pat on the back today! And who doesn't need that once in a while, hmm?
I know that the very thought of exercising causes fear to strike the hearts of many people with CFS. However, I think that it is important not only for overall health, but it may help in CFS recovery. So, I am on a quest to discover how to fit exercise into my daily routine in a way that will NOT make me crash and lead to a post-exertional malaise.
I already do morning yoga, and I tolerate it very well. I wake up sore and achy, so I love the stretches to get the kinks out. It's a wonderful way to start my day!
I am going to add a tiny bit of aerobic exercise -- I am going to rebound (mini-trampoline) for 5 minutes. (Actually, it is a one minute warm-up, then three minute bounce, then a one minute cool-down.) I have read that it is better to try to work out in the afternoon rather than in the morning, so I am going to schedule it around my afternoon rest.
So, here's the question -- do you think it would be better to exercise before my rest, or after? Should I be well-rested before I begin, or would it be better to rest to recuperate? Does anyone have any experience with this? Or do I need to try it both ways and report my results?
Another loss today ... surely this must be the last, because there doesn't seem much more to lose.
I awoke this morning to the sounds of my little ones searching the house for their Easter baskets (the Easter Bunny always hides them). I used to get up with them and watch them frantically search; this time, I lay in bed and listened. I could picture them in the kitchen when cabinet door after cabinet door slammed shut. I heard the garage door open and close. I could hear them rustling through the living room. I recognized a note of impatience and frustration as they found their brother or sister's basket but not their own. It was delightful to hear! I love such family traditions.
After baskets were found and breakfast was eaten with a rare dessert of chocolate, they scurried about getting ready for church. My girls put on their new Easter dresses and came into my room to prance in front of my full-length mirror. My boys came in to ask for help with their clip-on ties. It wasn't until they were ready to leave that they noticed I was still in bed. "Mom isn't going?" they asked, then came over and gave me a kiss on the forehead.
It wasn't until I heard the front door close and quiet fell around the house that the tears started coming. This was the first Easter that I wouldn't be sitting with my family during Easter services.
Something else this disease has taken from me. Something else I have finally let go of and surrendered to the disease. But, you know what? I know what my family will hear. It's the same story I've heard ever since I was a child. It's a story that is written on my heart. I know it, and more importantly, I believe it. I believe that Jesus Christ was resurrected, and I believe someday I will be, too. So even though today I lie in bed with a broken down body, I know that it is only temporary. Some day I'll be healthy and vibrant and complete, never to know pain or sickness again.
You know, when I first started experiencing CFS, I wasn't even sure I had enough symptoms to qualify. I had the fatigue, cognitive problems, and headaches. Were my lymph nodes sore? I didn't know -- I had never really paid attention to lymph nodes before. How about a sore throat? Everyone gets sore throats, right? Were the ones I experienced "frequent" or normal? Was I experiencing "post-exertional malaise"? Who knew? I felt like crap all the time; how can you quantify if it was actually worse after exercise or activity?
As I've settled into this disease, I am now able to recognize lurking symptoms. They may be overshadowed by the major symptoms I experience, but now I know they are there. Yes, I get frequent sore throats, but more importantly I recognize them as a warning signal -- I overdid it the day before, and now I need to take it easy. Maybe the joint and muscle pain I feel in the morning isn't just from getting old. Hey, my lymph nodes do bother me from time to time! Plus, I'm sensitive to cold and I get night sweats; I'm sensitive to light and sound; I have itchy eyes, eye spasms and tinnitus; I have a whole heck of a lot of cognitive problems; I have dizziness and neurally mediated hypotension; and I have TMJ.
Can undiagnosed skin cancer cause chronic fatigue? I've noticed I have several suspicious-looking moles. It's not surprising -- I've had palish skin since I was a child. I grew up in Southern California before sunscreen was heard of. As a teen, SPF 8 meant you were a wimp! Sun tanning oil was the rage. Every summer, I would get my traditional sunburn, which would then peel off and allow me to tan. I am a prime candidate for skin cancer!
So -- is it possible that I really don't have CFS at all, but instead skin cancer? Then, all it would take is getting rid of a few moles, maybe a little chemo (which they say is about as bad as CFS, anyway), and then voila! I'm all better!
I am a 46 year old stay at home mom. I have been married since 1988 to the world's best husband. We have six wonderful children. My husband and I are starting our own small business together. I have had Chronic Fatigue Syndrome since about September 2006. It's such a strange disease (illness? condition? ailment?). I wanted to create a place where I could come and write about what it's like to deal with the challenges of living the CFS life. I honestly believe that sometime, somewhere, some doctor is going to magically tell me, "Oh, I know what this is!" and I will be cured. Until that time, I'm hoping to learn something about myself and maybe help others.
