Lucile’s ME/CFS Journey

Dear Amir

I feel better physically and mentally than I have for about 12 years, which is a huge relief.

I no longer wonder if I will be well enough to undertake anything, I just assume that I will be, which means that I can fill my days and plan ahead, and which is of course very liberating.

I bike most days for at least half an hour, and enjoy the freedom and stress-free pleasure of walking rather than driving. In addition, I try to walk for at least half an hour most days. I am starting to lose weight, which is of course very satisfying.

“I now find that I have an additional 4 hours at least to my day, which means that I have been able to get on with all the projects which have been haunting me for a long time and which I never felt up to doing.”

Things like sorting through 10 plus years of photos and putting them in albums, clearing out cupboards, re-arranging my home office, all quite boring, but the reward is a feel-good factor. And more on the plus side: making social arrangements without the anxiety of maybe having to cancel, catching up with friends, going to the cinema, escaping into a good book, planning holidays, etc.

I also now find that I don’t have to rest up the day before I do my weekly babysitting for two of my grandchildren. The following day I can undertake my usual full day of activities, without any fear of not being able to cope. It no longer crosses my mind that I won’t be up to doing something, I just assume that I will.

I no longer spend a lot of my time calculating how much rest I have had or will need to have, in order to avoid getting over-tired. The strange thing is that now I am no longer focusing all the time on my symptoms, I find it hard to realise when I am tired, and sometimes have trouble in persuading myself that I really ought to go to bed!

My husband is having to get used to my being up and about in the evenings and often going to bed after him, so he can no longer hog the TV and the phone as he had become accustomed to, which has not happened for about 12 years.

As a result of all of the above, and particularly because I no longer feel constantly anxious about whether or not I will have the energy to commit to a particular task, I am altogether much more relaxed and focused, and able to enjoy life in the moment.

I also find that I am no longer worried about forgetting something, not being as sharp-witted as I would like, or generally not being up to par mentally; I just feel confident the way I am, and take the attitude that if I do mess up, well don’t we all from time to time.

As I put in my earlier email, I don’t feel I have to strive for perfection any more. I can’t really tell you why, except that you had warned us not to!

I suppose you could say that generally my confidence has greatly increased and certainly my family and friends have noticed a change in me. Fortunately, I don’t appear to have become intolerant or impatient, which is what I had feared would happen once the blandness and passiveness caused by the constant mental and physical exhaustion of ME had passed!

Of course, there have been a few times when I have had a “wobbly” day for whatever reason, and I would describe it as a momentary loss of confidence. Then I have remembered your advice and just gone back to the exercises as often as required, which have re-focused me and put me back where I want to be.

Once again, I am so happy and relieved to be well again, and spread the good news of the training whenever I can.

With very best wishes,
Lucile