Saturday, 6 December 2014

Graded Exercise therapy and ME / CFS

Yesterday I went to see my Perrin therapist.  She was pleased to see that I was doing well, it had been 6 weeks since my last visit and that has been a pretty good time in general. She believes that the recumbent cycling I have been doing with no resistance has been flushing through my thighs and getting the lymphatics moving.  It was also nice to hear her say that my thoracic spine area felt spongey, which means it has some movement in it, whereas in the past it has been rigid with no flexibility, this has to be down to the two yoga classes I'm managing a week.
So, my therapist pointed out that what I'm effectively doing is Graded Exercise Therapy (GET) and I guess it is, but here's the nub...if I had been asked to attempt what I'm doing now 4, 3 or even 2 years ago, it would have thrown my body into a spin.  At this point, I am the strongest I have been in my recovery, I know pretty much what my body can and can't handle activity wise.  I know what sets off my nervous system and I know when I need to use coping strategies to try and calm it.  Don't get me wrong, I am in no way in control of my body, but I am much more able to manage it.  Attempting to do this sort of exercise when you're not first this strong would be absolutely the wrong thing to do and I think that's the problem with GET being one of the main treatments suggested by the NICE Guidelines for ME/CFS.  Attempting GET before the body is ready is  going to make things worse.  However,  if you also have Postural Orthostatic Tachycardia Syndrome (POTs), which many ME sufferrers do (often unknowingly),once the body is strong enough to tolerate some form of light exercise it can be helpful.  Dr Peter Rowe MD of John Hopkins Medical Centre has been doing lots of research in this area.  http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing/orthostatic-intolerance-and-cfs-resources
So, the usual has happenned, as I have been feeling gradually stronger, I have been relaxing my regime - wrong thing to do! - and as Christmas approaches the main thing I've released on is my intake of refined sugar.  Yesterday was a bad day for this.  I'm not going to beat myself up over it, but, today I am going to pull the reins in again on this particular facet of my regime because I do feel it has played an important part in helping me with my recovery recently.  My next Christmas "event" is not for another 6 days, so I'm going to be pretty careful with sugar until then.  The positive thing is that since I've reduced my sugar intake my tastes have changed substatially and I now really don't want anything too sweet.  I'm going in search of a no sugar gluten free mince pie recipe as they are normally a staple in our house at this time of year, but right now the thought of biting into one doesn't appeal at all.  If you have any sugar free Christmas recipies please share.

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