Comment ca va?
Don't worry I'm not going to write all this blog in French! However I do seem to be speaking and listening to a lot of French these days.
It's a tough time of year for so many and especially those with a chronic long term illness like M.E.
I myself have been struggling on many fronts with pain, extreme fatigue and some depression. This is partly as a result of personal difficulties I have been facing but also because winter has taken it's hold with very cold and gloomy days. Spring still seems a long way off.
Whilst I was dealing with my personal problems there was a lot in the media claiming that we are afraid to exercise. Of course there was a backlash against that statement in the M.E. community. At that time I was embroiled in my own difficulties and felt unable to respond. So I'm just now putting together my response in this blog.
This is a poem I wrote some time ago about my personal reaction when being told that I was too afraid to exercise
You said that I’m afraid
You said that I`m
afraid
To do some exercise
But it`s a choice
I`ve made
As I know it`s unwise
You said that I`m
afraid
But you don`t
understand
It`s not a world I`ve
made
But part of M.E. land
You said that I
should do
A walk most of the days
But it will just lead
to
Post exertion malaise
You said that I`m
afraid
And it`s all in my
head
More effort should be
made
But I could end up
dead!
I could never be excused of being afraid of exercise. I'm a positive person who before becoming ill loved to walk, swim and play tennis. I had a full and active life. Now I have days when it's hard to get out of bed. I'm not lazy and I'm not afraid. I just know that I have to be careful in what I do and so rest and pace my activities. If I push myself too much I risk PEM (post exertional malaise) or even worse a RELAPSE
Here's a clip to the IIME 2010 conference where Dr Cheney makes the comment quoted.
I have learnt over the years how to live with and cope with my illness. I know what my limits are. I know what will make me worse. I have no choice but to and rest and pace. Of course there are times when adrenalin kicks in if we have to face and deal with the difficulties in life, much as I've had to do in recent months. As a result I've seen a decline in my level of health. I would love to put on my hiking boots and go off for a long walk but I can't. No I'm not afraid. I'm just being sensible and know only too well the consequences.
Anyway I'll stop here as even writing a blog has its consequences!
A bientot
From the French Femme
xxx
Rosalynde, Do you feel that with care you can improve the amount of activity or movement?
ReplyDeleteIt is something that I've personally seen but I've had to be very careful as I improved not to do too much. A step counter, such as we can buy in the pound shop can be surprising as to how much walking we may inadvertently do. Dr. Lapp recommends not more than 5000 steps for people with ME/CFS. No idea how this affects people with fibro. Anyone know about fibro and walking?
I think we all have our limits and levels of disability. Maybe with careful management we can increase those levels slightly. However this is such an unpredictable illness that PEM or a serious relapse can set us back without warning. I think we also have to become aware when we have carried out enough activity without causing any setbacks. So that's where a step counter could come in handy.
DeleteI'm with you all the way on this Ros. I've tried so many times and keep on trying but always with dire consequences, its a damned if you do damned if you don't scenario. Many years ago a consultant said to me "Whatever you do you are going to be in pain. Excercsie will cause pain and exaceberate symptons for sure, but if you stop excercising then you'll become unfit, have no stamina and your muscles will weaken, and while to begin with you might be in less pain, as you get older, the lack of excercise will cause you alot more pain and alot more problems, so its better to keep exercising now if that makes sense?"
ReplyDeleteAnd so i do, but it makes me so ill that i end up having to stop for a few days/weeks before starting up again. I've even tried pushing trough, thinking that eventually i will go through some kind of barrier and things will get easier, but again, i became so ill that i ended up bedbound. I'm so ill right now due to exercising the last three days. It really is a nightmare situation, great blog Ros, especially as you're going though tough times, respect to you and Luv N Hugs xxx
Thank you Stacy. Like you I have times when I feel I can exercise more and then it's so hard not to get carried away. I agree with what your consultant said. It's better to have some exercise and know that there will be some suffering afterwards. We use the word exercise and for me that means going for a walk when able but other activity can also set us back. As you say it's a nightmare situation and we have to become our own self experts. Much love to you xxx
DeleteHear, hear !
ReplyDelete