Today I have achieved something that I have been hoping to do for a very long time. I managed to drive, do an ‘activity’ and then drive home again. It is the second or third time I have managed to do this since September 2010.
I drove the six minute journey into town. I parked. I shuffled around a few shops. And then I drove the six minute journey home again. It was about a thirty minute outing.
The batteries in my legs were dying by the end but I did it. I did it! I don’t know what the aftermath will be like but it’s all a learning curve. I wasn’t by myself; one of my very best friends was my (brave) passenger and afterwards I was able to be honest with her and say that I was flagging a bit, so she left me to rest after we got back to my house and she went home. I really couldn’t do any of it without such supportive and understanding people in my life. I’m proud of myself for being honest too, rather than struggling along, hiding behind my smile, pretending that all is well, like I have done before when socialising.
I know, I know, there’s such a long way to go and I mustn’t get ahead of myself, but this is a fantastic achievement and huge milestone. It means I can build on this and eventually I will be able to drive the twenty minute journey to see my friends. It means I am regaining my independence. It means I can get a taste of normality. I still have months and years ahead of me rehab-wise, and this may be as good as it gets, but to look back to the end of 2010 and see such incredible progress is outstanding. I can remember being in tears one time, devastated and convinced that I would never, ever be well enough to drive again…. What I have achieved today is not something I could do everyday, or even every week, but maybe once in a while I might be able to try it again and this time next year maybe I’ll be able to drive to see my friends…
Over the last couple of weeks I have managed to have a shower nearly everyday and I have started to be able to blow dry my hair after washing it, if I’m sitting down with my feet up. This is incredible progress. I think I still feel as poorly, but I think my quality of life is slightly improved. I know I have made progress and I won’t give up hope that it might continue over the next few years. I am learning to manage my condition and I have ‘got used to it.’ I am also in the process of trying to find an M.E-friendly hobby, if such a thing exists!
My rehab programme, as laid out by the CFS/ME clinic, is not a cure and it’s not easy or ideal or straightforward (and it’s far from okay with regards to proper medical treatment) but it’s better than nothing. For me, it is ‘working’ on some level, even if it’s only urging me to count my blessings and celebrate the minuscule achievements.
The room is spinning now, my temperature has gone to-pot and the pain has worsened, as has the fatigue blah blah blah, but that’s to be expected and that’s ‘normal’ for me now. My baseline targets have been met in one way or another today. So off I go to have some purple time (another tick on my target sheet) and a quiet afternoon, hopefully not in bed but on the sofa if my body will allow it.