Some days I feel as though I will never be able to do anything “normal” again. My latest example is a couple of weeks ago when I severely sprained a tendon in my thumb from trying to open a teabag sachet. I do these kinds of “little” things almost daily, and I scold myself for even trying to do something that I “shouldn’t”. But if I can’t open a teabag, then surely I can’t do anything?
Other days I manage to sit up in bed and write all day. Others again I get to go out with friends and have dinner (as long as I am curled up on the couch and I don’t stay longer than a few hours). Better days yet are the days in the studio where I am able to play with soft, cool, soothing, beautiful clay and turn into works of art.
Have you ever jumped off something just a little higher than you thought it was (like the top of a slide or the guttering on the roof for example, …and felt every joint tendon and muscle in both your feet cry out in pain and protest? Well that is how both my feet have reacted to climbing out of bed or a car each and every day without fail for the last thirty years or so. I soon learn to place my feet my feet ever so gently on the ground, and when we stayed in houses with bare floorboards or tiles, I would always lay something soft by my bed to put my feet on first thing. Without even realising it I was subconsciously walking the long way round any house I am in, to walk from rug to rug rather than walk on the hard floors.
I am often asked the question “are you mild, medium or severe?”. On any single count of my condition there are people who are in way better shape than I am in, and many who are way worse. But no one can measure this even vaguely. When my children were small and I had no diagnosis yet, I would drop them off at school and then make my way home again, often not making it much past the front door where I would curl up on the floor in pain and exhaustion and simply lie there because I was unable to go any further but would not allow myself to go back to bed. I forced myself to work hard without stopping, each and every day, without even knowing what I was doing or why, but in hindsight it was to keep my body moving and stop myself from heading to bed and giving up completely.
If I tried that now I would injure myself badly and completely hit a wall (and yes I have done this many times, …ultimately leading to diagnosis) but I worked myself to the ground, completely crashed and damaged myself badly… resulting in the loss of my mobility. I have good days, many good days. But I work extremely hard to have them! I plan for them, I pace myself, I say NO an awful lot, and I have lost most of my friends and much of my life.
On good days, made a reality by massive sacrifice, I would consider myself to be “mild”, ….but it comes at great cost. I am “mild” because of everything that I can’t do or have. If I try and have a single “normal” day, within hours I am reduced to “severe”… If you measure me at any point in any day, the answer would be quite different, and I am extremely blessed to be in a position where I can have this kind of control over my life. Many people don’t. They need to have a job, look after little ones, bring home the bacon, or a number of other demanding things…they don’t get the luxury of being able to be mild, which truly, I feel is a newfound gift that I have!