Exercise

So as some of you may be aware, I'm working on increasing my exercise. It's a struggle. It's just so hard when standing upright, even SITTING upright, is thoroughly exhausting, let alone trying to do exercise. I have a plan which goes like this....working up to hydrotherapy x 2 per week, yoga (via DVD at this stage) x 2 per week, a walk x 2 per week. Then I have my strengthening exercises from the physio and I'd be working up to doing 3 rounds (approx 15 minutes each) of them x 3 per week and stretching x 3 per week. Then eventually I'd like to increase my play on things like my wii, doing stuff like getting dance dance revolution, using my wii fit, getting a surfing wii game and I also enjoy playing wii sports. Now all this is a lot for someone who is almost housebound and when IN said house is almost entirely limited to her bed and the couch! So it'll take time. I am struggling with motivation and also with energy in general. The thing that keeps me going? I want to learn to surf! Like I really really REALLY want to learn to surf, I want to get good enough to use a short board (which is essentially the type of surfboard used in competitions) and I want to do something I truly enjoy....that means I need strength, flexibility and balance, so I think my exercise plan is appropriate.

A problem though? One of the biggest problems with me/cfs is that there is a delayed fatigue response in the majority of patients. SO even though they may be able to maintain some energy after a day's exercise, if you retest them 1-2 days later their capacity is severely diminished. This is called Post-exertional Malaise (PEM). With me/cfs if you push your body too hard for too long (this includes mentally as well as physically) your body WILL crash, it WILL go past the tipping point and things will not be happy. When you're past that tipping point and falling failing over the edge of the cliff, there is no way to really get back up that cliff, or at least in general, not for a very long time. I worry that with my exercise (plus study and friendships and therapy) that I'm going to send myself not just tipping off the cliff but with a flying leap! I really don't want to get any more unwell, I don't think I could take it....especially when there is no end in sight (which there isn't really for me....I just desperately hope that doing trauma therapy will help to reduce additional me/cfs symptoms that are exacerbated by trauma)....but I REALLY want to learn to surf. SO I'm trying to take things very slowly and build up very very slowly and keep my aim in sight. I mean once I learn to surf (and an amazing friend is going to do the surfing camp with me so we can learn together!), if all I get is two waves before I crash in a heap that day, maybe its entirely worth it. To do something that (hopefully) doesn't lead to dissociation, is something I enjoy and is something that's not about being unwell or working or money etc so on and so forth.

But I was reading this article (http://www.occupycfs.com/2013/01/18/comparing-exercise-advice/) recommended by a very good friend of mine about exercise in me/cfs. Because my heart is almost constantly tachycardic these days (even when I'm laying down, let alone when I exercise), I'm pretty much already at the threshold of physical activity just from EXISTING! Let alone trying to exercise. The article made a lot more sense and didn't discount exercise...but on the same page didn't advocate for it the same way GET does (Graded Exercise Therapy - a form of treatment often encouraged by older school me/cfs physicians and in some circles where patients are not quite so unwell...but the studies I've seen are poorly done and don't have very many participants and thus anecdotal at best). See I think GET has a place at the right time....and we could argue that what I'm trying to do is a form of GET and I guess it is...but thanks to this article I discovered, other than my heart racing is giving me a work out as we speak, that also the type of things I"m trying to do are perfect for me/cfs sufferers especially the hydrotherapy and yoga! Yay go me!

ME/CFS is such a complicated illness and is complicated further by a great many other things. But it takes away so much from so many people. It's a hideous horrible illness. I'm doing 2 subjects this semester (although one is a year long subject) and I wonder if I'm even going to make it to classes regularly! I'm anxious to say the least. Then on top of that I want to do exercise! AND learn french (topic for another day).... I'm starting to think I'm being a bit ambitious...but at the same time, I think I need to try. Because resting plus therapy isn't quite working...I know that entire bedrest for cases like mine have anecdotal evidence of helping, but its COMPLETE bedrest which means I would need a very compassionate, patient slave (or set there of) to help me out. So I'm a bit mixed up about it all, but I do hope that I can get my yoga DVD (waiting for delivery) and start there...and just keep going as I can... I used to love exercise, even with the horrible pay back...besides, having more flexibility will help my joints and my bones, doing some weight bearing exercise will help my osteopenia and hopefully some of the bone pain (although the later is dubious at best) and more strength, especially in the core muscles, will hopefully improve my posture a bit (although I think as well I need to keep remembering about the Ambassador as well as not needing to become invisible and at one with walls also)...

I guess the thing is, exercise is important, in the right setting with the right help...lets hope this turns out to be a positive experience! I really really want it to be!