M.E./cfs is a very frustrating illness and for me, a lot of frustration comes from not being able to exercise. As someone who was previously quite active, it's really difficult to keep myself from exercising.
For example, I try to walk everyday, even if it's only a 1/4 block. But if I've walked a 1/4 block and don't feel terrible I start thinking "maybe I'll walk a 1/2 block, or a whole block, or three blocks". And maybe I do walk a whole block. But very unique to this illness is something called post exertional malaise...which means that the consequences of walking that extra block might not hit for up to 48 hours later!!!! So, I could think while walking the block that I got away with it and it was good for me - then 48 hours later I get hit with what feels like the flu (influenza, not stomach flu)- a slew of immune symptoms, fatigue, and weakness. Adding to the frustration is that fact that sometimes I DO get away with it, and sometimes I don't, so I can never be sure when it's OK to push it.
So what does the title of this blog post have to do with exercising? Well, I sometimes do what I call "rallying". Lets say, for instance, that I'm laying in bed feeling awful, but I have the chance to go out for coffee, or breakfast, or I need to work on school-stuff. Sometimes I rally and make myself do it despite feeling ill. And sometimes rallying works and I'm glad I pushed through the sick feeling, but sometimes it leads to an even worse crash and me laying in bed later wishing that I'd never heard the word "rally".
The last two days when I've taken my walk I've started out feeling OK. Then, as soon as I've walked a bit, the feeling of being a heart patient sets in. It's like I can't get enough oxygen. Don't get me wrong, I can breath OK, it's just that I start to get waves of the fluyness, weakness, and fatigue like my body has no fuel. It's like what I've heard described by people with heart conditions or anemia. On the positive side, when I feel like this I don't push myself hard. I just take a short gentle walk. I figure even if it's just a little movement, that it's important. I don't want my body to completely succumb to deconditioning through laying around all day. Even simple movement can help with lymph flow, blood flow, and muscle atrophy.
I miss exercising as well! I loved walking my dog, cycling, swimming and jogging. I'm starting to build up exercise slowly, but it is so frustrating!
ReplyDeleteSo true what you say about 'rallying'!
I miss exercise too. I used to spend lots of time at the gym and riding my bike etc ... but now I pretty much subscribe to what you have described, I try to walk a little each day, usually just around inside my home because often I get the heart patient symptoms too ... and it's scary so I don't want to be outside with that!!!
ReplyDeleteYou know something I read recently - can't remember where - is when they check our muscles they are not de-conditioned as some had thought. I thought that was amazing considering how little exercise we all get.
ReplyDeleteI have the problem where if I stay too sedentary, the FMS kicks in so I need to move a little every day. But on the other hand, that movement may flare up the CFIDS! Can't win for losing!
I agree with you too that determining when it's okay to push or not is really challenging. I we got the response now we could adjust but when it comes 2-3 days later! How do you adjust for that!
It is an interesting illness we have.
BTW, have you heard the news? The FDA and the NIH have confirmed XMRV in CFIDS/ME blood. I just read the article a few minutes ago! My understanding is that they can't prove causal link but they can prove that its there. Wow!
Thanks for the news Dominique....I did read it last night and got excited...can't wait to get tested although I figure I have it....it fits, my version of M.E. has always been so viral.
ReplyDeleteThanks for the comments Lee Lee and FG! If you had one day to do any exercising you wanted, what do you think you'd do first. Strangely for me I think it would be going for a run....somewhere beautiful of course :)
Just. keep. moving.
ReplyDeleteRallying: I totally get it. You're still somewhat new to this illness (I heard you groan ;) and so your abilities to pace and determine what may or may not happen in response to your activity are still being finely tuned. Don't get me wrong, 17 years in I still find myself occasionally taken aback by unexpected flares to activity, however not nearly as often as I used to. It's sort of like I formulated my own graded exercise program and I know where my thresholds are for most given circumstances.
As you're well aware, it helps just to keep getting fresh air. It helps so much just to be outside sometimes. And sometimes it helps just to go out to a cafe and people watch.
I know it's hard, but you're doing the best that you can with what you've been given. Rallying can be a good thing so long as you adhere to your limits for each given flare and resist the urge to push onward for the moment. It's not easy to do either when you find exercising fun like we do!
USA Soccer Won! I love watching, however I so wish I could play like I used to. I miss playing; illness zapped me from the state team. Instead I'm going to help out coaching JV in the fall. That'll just have to do.
If I had one day of exercise that's what I'd do: play in a soccer tournament.
Rally on, friend.
jenji
Oh, this sounds so familiar! And it is so frustrating. Sometimes we have to push through for our own sanity's sake but we pay for it later. As Dominique says, can't win for losing. You'll find a way through :-)
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