Subtitle: Why I’ll Never Be At The Paralympics
I was talking to my grandmother the other day about how fantastic the upcoming paralympics would be, “Yes,” she commented, “and I’m looking forward to seeing you up there in four years time!”
I’m disabled, but I’ll never be at the paralympics.
I have Chronic Fatigue Syndrome.
Most disabilities, I think, are “like” (metaphorically) having some part of your body or some sense or faculty tied up with rope. If the disability is partial then the ‘rope’ is loosely tied – there’s still a bit of give in it. Being paralysed is like having your lower body tied up. Being blind is like having your visual sense tied up.
Having part of you tied up with rope like this is, of course, bloody awful. But to a great extent you can learn to get used to it. Work around your areas of disability, find out what parts of you do still work. But what if the ropes moved and changed and were never the same? How would you adapt? How can you get used to something that’s never the same one day to the next?
Chronic Fatigue Syndrome is like that. Having CFS is like having every part of your body, and every sense and faculty – every single part of you – tied up with extra strong rubber bands. Nothing is quite like it used to be, and you can move a little but you never know when the rubber bands are going to PING right back and that hurts a lot.
You can never know where you stand with CFS, except that that you’re going to lose in the end. The harder you push against the rubber bands the harder they ping back at you and the more the pay-back hurts. On different days, and for different people, the rubber bands ping back at different times.
All you can do is try to guess when the rubber bands will ping and not push quite that far. You have to push some against the rubber bands or you’ll get sicker through things like muscle wastage – total bed rest isn’t a good idea if you can possibly avoid it. But finding that area where you are pushing but not pushing too much is almost impossible. Especially when the definition of ‘too much’ changes from day to day and even hour to hour.
But don’t rubber bands get looser the more you stretch them? The CFS variety don’t. The more times a CFS rubber band PINGs back at you, the tighter and stronger it will get. With many disabilities you can train and push your way through limitations. Once you accomplish something it’ll be easier next time. Not so with CFS. If a CFS patient tries to push through their limitations, the rubber bands PING right back stronger than ever and next time even less can be accomplished.
All a person with CFS can do is do their best and accept that the rubber bands are there. You can’t ignore them, you have to take them into account in everything you do. You have to try to avoid pushing too far and getting the ping-back of a crash, but also accept that sometimes it will happen.
Just do your best.
What a wonderful word picture!!! Thank you for putting into words such a helpful descritpion of our daily lives.