So what have I achieved?
1. I am now able to stretch all the muscles in my body without payback later.
2. I have been able to increase the duration of each stretch from 5 seconds to 7 seconds.
3. I have created a successful system of alternating ‘Active’ and ‘Rest’ days, this has enabled me to avoid boom and bust.
4. I have been able to work out the baseline number of steps per day I should take – again avoiding the confusion between perception and reality of how active I am.
5. I have increased my Rest day steps from 1700 to 2530.
6. I have increased my Active day steps from 2700 to 3630.
7. I have enabled myself to go from practically housebound when alone, to being able to go out 3 – 4 days a week alone.
8. I have increased the distance I can walk on my Active days from practically nothing to 0.9 of a mile with a 10 – 20 minute break in the middle.
9. I have worked out that I can increase 2 activities a week by 10% without payback.
10. I have increased my Activity Points from an inconsistent 11 to a consistent 13.
11. I have been able to control my urge (most of the time) to do more than should on a good day therefore making it less likely that I will experience boom and bust.
12. I am able to read a book again (in short bursts) having not been able to for about 6 months.
13. Over the last 21 days, 20 have seen only mild symptoms where previously they were either moderate or severe.
14. I sleep every night for 8 – 10 hours: up from 3 – 4 hours six months ago.
15. I didn’t give up when all signs suggested I should.
These are all massive achievements - and as you say above, you have not been ill for as long as others so hopefully you can overcome this with good rest, pacing etc
I also did this about 3 years into being ill, but unfortunately despite believing I was cured I actually wasn't and six years ago I had a horrendous relapse which I am still not really recovering from. I wish I had realised that I was only in remission and not cured. I had no idea I would be having to live through the nightmare of M.E twice - although this time it is far worse, I also realise I did still have M.E in the in between years, just more mildly.
Back to your blog post - can you say how you devised this programme? and do you go to a clinic or something? we don't have a clinic where I live and no specialist help and advice at all.
I have tried very slow very gentle stretching many times now, but find I just cannot tolerate it. I also used to walk every day for 5 - 10 minutes, even when I was dragging myself around and while it gave me a great sense of achievement and I enjoyed It I found it was making my health worse.
In the end I gave up my walks and got a wheelchair and did LESS. Now 3 / 4 years later there is an improvement in my functioning, but yes I feel less fit, but I am able to do more of things like study, talking, cooking etc. I have recently tried gentle tiny walks and swims (5 minutes in the pool floating) which feel lovely, but 3 days later I feel like I have been hit by a truck and need to go to bed for days to recover - its so disheartening.
I guess I have been sick for many years now - even with the sort of remission trs been about 20 years. My hopes are now pinned on finding what is driving the inflammation in my body and trying to treat that. My M.E doctor says that I have neuro inflammation that is now causing small frequent daily seizures and when I do less these get more under control so its a delicate balance all the time.
I also wish I could go out more alone - I have not done much of this for over 5 years and anxiety hits whenever I try to, but being out and about when you are feeling so ill makes me feel very vulnerable, so I find I cant really cope. ets hope my Dr finds some critters to kill and that helps me feel better!!
All the best with your recovery and blogs,
Justy.