It is that time of year again, ME Awareness week. In previous years I have been a princess, a superhero, "gone blue", and donated various handmade items to auctions and raffles. This year I am not doing any specific fundraising, apart from my on going "Kickscoot the coast".
This year I would like to talk to you about hope and improvement.
I am a great believer that when there is hope there is a way and that it is so important for those suffering with ME and their carers to always have hope and never to give up.
If you or your loved one has ME you have to be in it for the long haul. There is no quick fix. It is tough. It is brutal. Basically it sucks big time. But it is also a journey filled with ups and downs, highs and lows. Sometimes the downs feel bottomless and the highs short lived, but you must never give up.
I am lucky to find myself in a fairly good patch at the moment. Recently I have been looking back over the last day or week thinking I couldn't have done that a year ago. Which is such a tremendous boost!
I know this is a high and unlikely to be maintainable but I shall enjoy it while it lasts (and be thoroughly miserable when it ends!).
But even through the regular highs and lows I can see an ongoing improvement. The lows aren't as low or don't last as long, the highs are higher and higher. I wouldn't go as far to say an end is in sight, but improvement is there all the same.
The specialist I saw when I was first diagnosed (some 16 years ago) used to ask me to measure my health in %, 0 being bed bound and 100 being fit and able to work full time. I would say at the beginning of this relapse (4years ago) I was down as low as 20%, now in this particular high I think I'm around 70%. Which, written down like that is huge improvement!
