I am amazed and delighted that my last post, Who Am I, resonated with so many of you! I try my best to negotiate each day as a free spirit, unencumbered by my body, whilst at the same time, factoring in the need for rests and a regime. I am sure that those of you with physical challenges can relate to the following scenarios. Our local movie house has a ramp, from the ground level to the 2nd level. One has to stop at the first floor to get tickets and snacks. There is a lift, but it operates with a key which is often hidden under detritus in the office. Trying to negotiate the long walk with tickets, drink, popcorn and a walking stick is arduous. I don’t want to hold up my friends by waiting until the lift is available. I don’t want special treatment, or to draw attention to myself.

The second scenario is when you have your day planned. It may be a day in the city. I have a regime drawn up, stating what time I will be at particular places and when I expect to leave. My body holds me to the promise of pain relief and rest at particular times. If I am held up, there is hell to pay. It is a different way of being; engaging with the world, whilst having limitations. A fine juggling act.

I panic if I am home later than I anticipated. I know there will be hell to pay. It may be no sleep that night, or vomiting because I had to take extra pain relief and the side effect is nausea. The danger with the pain relief is that I am agreeable to most things, and the pain is discounted. I am floating! I sure come down to earth with a thud when it wears off!

I still hold to the theory that I am not my pain, nor my body. Do you suddenly become a car because you are driving one? It is just that my vehicle is a little rusty, and has to be treated tenderly. Perhaps I will wait for the lift at the movies, to make life easier on myself.