M.E. for Me – My Journey

Today I reached a huge milestone, I have just climbed a mountain, a small one, but one all the same, with my son and husband and it feels like a real beginning. (My daughter, the only one missing, was with friends!)

I walked for 2 hours and saw views I never thought I would experience, having spent 5 and a ½ years with ME.

For those of you reading this feeling disillusioned and full of despair, I was there too for a long time.

I went from running the London Marathon in 2002, with 2 young children, and being a share holder in our Consultancy business, with a £1mill t/o and an active social life, to lying in bed sometimes for up to 20 hours a day. Days when I would get down stairs only to have to get myself back up to bed, days of lying in bed too tired to call for a drink, of watching my young children having to look after themselves, of losing my job and having to move house as I could no longer cope with the one we had.

I despaired of getting better, of trying to plan a future and failing to reach it again and again, of watching my children’s young lives go past me, wandering if I would ever get out of this quagmire.

I know for some, it perhaps doesn’t get better, and for some the improvement is maybe not so great.

But I also want you to know that sometimes there is hope, it will come.

My answers?

CBT was critical to me getting my head sorted out into a place where I felt I could begin to cope. And pacing, constantly, over and over again, reviewing, assessing, learning, what worked what didn’t, not too much, again and again. I constantly felt I had failed, I constantly “beat myself up” for failing! I still do, but with a smile now.

Friends? I have fewer now, but I know they are my true friends, and I have gained some special ones too.

Family? My constant source of support, family including my parents and brothers have believed in me without fail, and without whom I would probably have gone crazy, only they gave me the confidence to accept where I was, only they knew it was real.

Doctors? A great GP who believed in me and my condition.

It seems to have taken for ever to have got to this place, I still have to be very cautious, I sense in myself a constant fear, have I done too much, will I cope? I still struggle, I still type back to front, my mind goes blank with people when I am talking. However, I have developed some coping mechanisms that help, they become part of life, I still know a “coffee stop i.e. rest place” in every town – and use them!

What has surprised me though is what I have gained in a crazy sense from this whole journey – one I wouldn’t have chosen!

I now allow myself to be me, I understand and listen to my head and my body, I value life and take time to stop and enjoy it. Without M.E. I wouldn’t have learnt to live like this, I wouldn’t have chosen this path, but I value what it has given me.

Written in 2008 by Shona Sinclair.