Being part way through a pain management/physio course which is non HMS specific I keep coming across things/being told things, and I'm not always sure how applicable they are to an HMSer. However, I don't want to arrogantly go around saying 'that doesn't apply to me', if actually it does! So 'talking' it through with people with more experience in HMS seems like a good idea.
I thought that others might be similar so thought I'd start a new thread (mods, please move if you want)
So, my 2 questions/issues from todays session are:
We were setting goals for ourselves. My long term is to stop using crutches, and short term, in order to achieve this, is to gradually increase the ammount of walking I do without crutches.
The physio said I had to find a halfway point between good and bad day and do that much every day.
Logical, especially for the chronic pain stuff BUT...
My joints are really affected by hormones, and I typically get 2 really bad, really bendy weeks (Can slip the SI joints by standing up/1 step, any walking rather painful), and 2 pretty good weeks (comparatively)(e.g. I can probably walk 20 metres without major mishap). ( I get both good and bad days within these periods).
If I limit myself to half what I can do in a non-hormonal week (NHW) I'm hardly going to be using the muslces I have.
If I try and walk 10 meters no crutches on a hormonal week (HW) experience says I will almost certainly slip something and will be in too much pain to think straight.
I know that you should 'pace' at a level between good and bad days to stop the over-use/under-use cycle, but this aspect isn't about overuse, its hormones. My logic says to have a 'dual goal'. on a HW have one target (like 5 metres), and a NHW target which is higher (20 metres). Any thoughts?
Also, slipping the SIs is painful, and walking (with or without crutches) is difficult after relocating it. While it is out, mobility is practically zero. (office contortionist
). After 1 bad SI slip/several lesser slips in a row pain will only reduce if I am nice to it, and really step down how much I do for at least a day or two. This doesn't fit with the general pacing ethos either. It isn't overuse, it isn't chronic 'your body is remembering the pain' stuff. So How do I factor this in?? Do I ignore my other pacing/goals and try and recover from the acute, or try and fight through the acute, and keep at my 'pacing/goal' targets?
(sorry it was so long, but I find that the combination of putting my questions down in words, and hearing back from others really helpful.)