A recent Drs. visit revealed I'm not doing as well with this illness as I had thought (or was that I had hoped?). That was followed by some strict warnings to change my ways, or else.
One thing that frustrates me the most with CFS is the unpredictability of it all....and it's unpredictable on so many fronts. (I know many CFS sufferers struggle with this unpredictability part of the illness as well. Dominique over at 4 Walls and a View wrote a wonderful post on this very topic)
Things like the unpredictability of:
--not knowing how much energy will I have today, tomorrow, next week or even in the next hour (and it can vary that much from hour to hour)
--not knowing when a crash is going to happen.
--not knowing what exactly causes a crash
--not knowing how long a crash will last.
Now, I'm not talking about huge amounts of energy requirements...I'm talking about energy levels for daily tasks that most people take for granted. Things like grocery shopping, or vacuuming, standing, or lineups. I've just recently started going into grocery stores and helping Larry with groceries...but when it comes time to check out....it's out to the van for me.
Most days big stores like Costco are out.
Or walking. The kids are taking swimming lessons...I'd love to walk to the end of the pool to watch them...but each week so far, I've been unsure if I'd actually make it to the end and back again.
One day, I'm able to do most things (like going out) while the next, moving around the house is a challenge. Not being able to plan for these days, makes it even more frustrating.
This was the case with my last major crash. It was last January and I had been steadily improving health-wise. The kids had skating and the arena was equipped with a wonderful indoor track up over the rink area. I thought what a great idea...I could walk around the track and keep an eye on the kids at the same time. On that fateful day I walked into the arena feeling better than I had in a long time (at least a year) and yet left the arena barely able to walk or drive home. When I got home, I literally collapsed into bed and barely woke up for two or three days. That was the start of a crash which lasted six weeks...and a long six weeks it was. The phone did not ring, the only people I saw or talked to was Larry and the kids, and I hardly got out of the house (except two or three rides into town but I did not get out of the car once in town). Most of that time was spent in bed. The household chores fell on Larry and/or the kids. Suppers became frozen chicken fingers and fries...or other similar easy fare that Brittney could do. Each night I went to bed hoping the next day I would wake feeling feeling better. Thankfully, Tyler could drive. He was able to take the kids to piano lessons and skating.
While this not knowing is frustrating for me, it is even more frustrating to adequately explain it to people. They see me out and think I must be better....except they didn't see me two days ago when I couldn't get out of bed and they won't see me if I happen to be that way tomorrow. They don't realize, I may have been 'saving up' my energy for the last day or so in order to be out for that particular day and they don't realize after my afternoon out, I will head home where I will need to rest for the remainder of the day. I don't go out when I'm at my worst (partially because I'm not able, but partially because who wants to be around someone who can barely remember their own name, let alone carry a conversation...brain fog is something else with all of this). Sometimes, I think I should take pictures of myself when I am at my worst or better yet...actually go out! (That would surely raise some eyebrows) Then I try to remember they aren't being intentionally mean...they simply don't understand the disease. The education is just not there and there are so many false ideas of what CFS is or isn't ... or what a person should be like/do/not do when they have it. (This type of thinking/questioning is as frustrating for me as the question homeschoolers often hear...."What about socialization?"....argh...)
I have found if I can sit down while doing things, I am able to last longer (not as long as I once could...but enough to do what needs doing). Things like making supper, folding clothes or doing chocolate are still doable. So, as long as I am not crashed....not all is lost....as long as I remember to pace myself in order to not end up crashed. Once I'm crashed though...it's anybody's guess how long it will last (another factor of CFS).
I recently watched an episode of The Golden Girls in which Dorothy had CFS. While I watched the shows, it was great to see it portrayed so well. Everything she experienced, right from the treatment of some Drs., to the reactions of people were so bang on. It was great to see something where someone actually 'gets it'. I was nodding my head so much throughout. Then....it occurred to me. Wow....those shows are over 20 years old. We haven't made very much progress in 20 years. Shocking that is. Many people 'in the know' (CFS researchers, CFS Drs., etc) feel a breakthrough in the treatment or cure of this illness is on the horizon. Let's hope....because it's about time! A really good place to start would be renaming the disease with a name that more accurately fits the illness. That shouldn't be difficult....almost anything would be a better fit than "Chronic Fatigue Syndrome!"