I have had a very rare occasion happen today, for the first time since Christmas I had a visitor. Jake phoned yesterday just for one of his weekly chats and asked if he could stop in today for coffee. It’s strange how so many weeks pass without my seeing anyone other than Adam and the very occasional a nurse, but I don’t realise the time has gone. Something seems to change inside when your contacts with others is slowly reducing. In part it must have to do with expectations but I can’t find a point where it went from daily to monthly and beyond. I don’t feel lonely and I don’t feel isolated, it just feels normal and natural.
Years ago if I had been told that I had to stay in the house for several days on my own I would have gone stir crazy in hours. I slowly became more home based in the first years of the progressive stage of my MS. Those days seemed long but the outside world was barred from me as I couldn’t even walk from my home to the bus stop. For work I forked out the ever increasing taxi fares, it took two years for someone to tell me that I could get them paid for. I remember the relief that brought not just to my pocket but to me self-esteem, at that point I so wrongly thought that I was heading for the scrap heap, work was becoming a luxury that I couldn’t afford. I never thought I would be looking at government payments as a viable solution. In a round about way I had those payments, but only for my transport as I was bringing in the money that allowed us to live.
When the office became too big I had to give in and accept that a wheelchair was the answer. The day I first went to work in a taxi with my wheelchair I felt terrible, those things I called legs were useless. My body was useless. With in days I had totally changed my view. I loved that chair, I love my freedom, I loved the speed of movement, I loved my independence. I had my friends back as I could get out to meet them, the pub returned as a joy, the door and it’s step a pain but once in I was back in my world. I felt the loud music and the smiles of those who hadn’t seen me for years. Yet slowly I had to move away again. I didn’t have the energy to do all I had in the past. Work and a weekend partying was something I had to admit was over, but still I had a renewed and regrown world to explore on wheels.
Even wheels couldn’t in the end provide me with the past, I had to move into my living space of my living-room. MS was taking my wheels from me too, my energy levels could only cope with the office twice a week and the house the rest of it. I adjusted and worked round it, I formed a new world within what MS allowed. Once again I settled and became happy, I produced a full days work office or home and nothing else mattered. I saw people when I could, I met friends when they asked and life felt good again.
My left arm decided one night while I slept to end all this and not work. No arm, no wheelchair, no outside world. I tried, but when I got my left hand caught and mangled by my chair wheel, I got the message. This is the point I don’t understand and don’t know if it is me or nature, but I found acceptance, then happiness in the new world of my home and I worked with it to rebuild a world I am happy in. For a few years I still managed to work from right here. No daily pressures of the commute or endless meetings.
If you have read this far, them maybe you have seen something that escapes me, but I am truly happy here sat behind my PC in my living-room, in every sense of the word. I am happy to see friends when and if they want to be seen. I am content to wonder around in a world that exists in my mind and touching others when they want to touch back. Housebound is really a horrid word, I wish I could find another to replace it, it scares the hell out of others but not me.