I don’t know why I didn’t think about it before, but of course although there are some who have read my blog throughout, most won’t have and that means many don’t fully understand some of the most basic things about my life, it’s OK I am not going to go over the last 30 years of my life in this post, nothing like it, but I am going to go over some parts of it, supplying links to posts so if you want to know more about just that part, well just click. I am not just writing for those who haven’t read everything, but also because some of it, I realise now I have more to say about, things to say that I haven’t before.
The briefest history I can come up with is this. It took from the very first signs of what I now know is MS, to the first time a doctor managed to diagnosed what was wrong with me nearly 20 years. All I will say here is that doctors don’t know everything and once one decided there is nothing wrong with you, it takes a lot of time to change their minds. I was diagnosed because my MS changed from relapse remitting, to progressive relapsing, once progressive it was hard not to see, as I was ill and not getting better. At the same time they pulled me to pieces and found a list of different things, most had been missed and all are still with me, but the main two that cause my pain and fatigue at Fibromyalgia and my MS, often it is hard to tell them apart. My life to that point had been very active and often exciting, I had only been married to Adam for 2 years and both of our lives were taken away by something neither of us ever thought could or would happen.
I over the next couple of years progressed through walking sticks, wheelchair and drugs enough to fill several cabinets, even chemotherapy. The biggie of course was finding myself housebound because I lost the use of my left arm. I was luck in one thing that the job I did could be done from home as easily as in the office, so I continued to work until two years ago when I was made redundant. My journey into being housebound in one way happened in one day, but on the other really took several years, I can’t leave my home without the aid of an ambulance crew, as I can’t manage the stairs from the flat to the street any longer. I know that I have written a lot about the actual events of leaving the flat for a hospital visit, but what I have never written about other than just to say I can’t manage the stairs, is how it really feels and what really is stopping me.
Living on the second floor of a tenement block means there are several flights of sandstone stairs between me and the outside world, there was always a plan that when my health meant I couldn’t manage the stairs, that we would sell up and move. Since this is the truth, well I had been struggling daily with the stairs for several months before my arm locked me indoors. Going down in the morning was terrifying, I felt I was facing a shear cliff face, as I knew that my balance could take me to the bottom without any notice. I would head down them daily holding on the bannister often with both hands, as I was sure my life depended on it. I had already been up each day for two hours before I even tried that journey, I needed time to recover from the effort of washing and dressing as they drained my muscles, muscles I really needed. It was the same each day, step by step hoping that the last step would be found by my foot not my head. If you go now and face down the stairs, take that first step analysing just what muscles you use, you will be surprised just how much energy and precision it actually takes. Now add in that any second in that process any of those muscles will spasm, that every step drains them and you have four more flights to go, half way finds your muscles dying and pain increasing but you have to get to the bottom. Once there I just had the length of the hall and my taxi was there, ready to take me to work where my wheelchair waited. My time in the office was no more than 5 hours, but waiting for me was the return journey.
Going downstairs was bad, but back up, well often it was achieved seated rather than on my feet, listening the whole way in case someone else was about to appear on the stairs, embarrassment made me stand before they did. Although opening the door was a relief, I still had to get rid of all those heavy cloths before I could fall in to bed. To achieve just 5 hours at work meant being up at 5:30am and found me asleep by 2:30pm, that was back in a time when I had energy and a body that didn’t put up the pain that it does now. The last year of going out was enough to make anyone not want to do it at all, but that was 8 years ago, now although it has gone through my mind more than once, well there is no way I would survive just that first flight far less the rest. I once made it in to the hall and I stood there by myself, looking down and wondering, but also knowing that I simply don’t have the strength and that’s without thinking about the pain it would cause. I totally admit there is also a physiological aspect now as well, I have learned to be scared of them, fear alone I think would stop me going any where at all.
So why don’t we move? Yes I hear many asking, but it’s never as easy as that. We are caught like so many due to finance, with only on wage what we have to spend is tight, but money isn’t the only reason to stay where we are. I have thought it through many many times, even if we lived where our front door opened to flat ground, I still wouldn’t be able to go out. Both my MS and my Fibro have now stripped me of the strength and energy to even get myself ready to go anywhere, just as it is now when I have to go the hospital, by the time I get there I am so tired I just want to go home, it is all to much for me, and I do mean ALL. Add in what I said the other day, I have no where I want to go either, it’s not just the stairs, terrifying as they are.