I woke up bolt upright in my bed. For a second I wondering what had woken me and why so suddenly. Adam was snoring but I knew it wasn’t that, then a car door slammed and at once that yet again that annoying idiot who lives a few doors down had on his way to work ditched his rubbish then flung the lid back over the enormous communal bin. It has just passed 6 a.m. why are people so thoughtless? There is an hour and a half until my alarm is due to go off but lying back down on the bed is a much slower and more painful a proses than I remembered sitting up had been. I used to always get up if anyone woke me after 4 a.m., starting my day using the extra time to clean the house or catch up on emails, now I lie down and swiftly return to sleep. Seconds later the annoying buzz of daytime woke me again. I knew I was right about the time when I first woke and therefore I hadn’t been asleep for just seconds but it felt like it. My sole was pulling me back to the mattress but structure is important part of managing the MS monster, no matter how much I want to sleep, I have to convince myself out of my bed.
I’ve been trying to work on staying a sleep whilst looking as though I am really awake and moving around. I can now get around the house with my eyes closed out of need, unfortunately the sleeping bit as well is still escaping me. My eye site hasn’t been great for several years now, the MS is causing problems with my left eye but it is really my right eye that is the problem. I thought it was part of my MS but after tests were completed the reason that I could only see out of small clear spots and the rest of my vision was blurred was explained. I have Macular Degeneration, something else that nothing can be done about and for a bit more fun I am short sighted and with a need for reading glasses as well. I get a lot of motion sickness due to not being able to focus from close to far through blurred, blind and fuzziness. It took time but the first solution is to keep light levels low, bright light floods everything and makes me try to focus, drop the light levels and instinctual act of trying to focus is limited to a smaller field. It wasn’t much of a jump from there to on bad days just keeping my eyes shut, I’m quite good at it now, to the point of being able to walk into a room and locate an ornament by knowledge and touch.
I made it safely from my bed to the bathroom and then to my PC in the living room, lit the first cigarette of the day and once I had pressed the start button and I could heard it starting it’s boot-up session, I let the first rays or light in to the room, no not the curtains, the TV. Adam was still snoring with his head under one of the cushions. He has slept in the living room for several years now as he knows that I am easy to wake and that I also have to get a lot of sleep. When tired the pain is worse, I get easily confused and I stutter more. I love him for being so thoughtful but I am left feeling guilty. Our home has only one bedroom and no space for more than one bed, another bed wouldn’t really be the solution anyway, it’s his snoring that is the problem, not his strange need to use the mattress as a trampoline while he gets comfortable. Some nights he does join me, then neither of us get any sleep, he wakes me with his snoring and I try to turn him or move him to stop it, in the proses I wake him.
We both fell in love with our home a long time ago, when my MS was diagnosed we thought that we were covered by an insurance policy we had and that it would pay off the mortgage but it didn’t. We took it right the way to the ombudsman but we still lost. When we filled in the form there had been a couple of questions that I hadn’t answered correctly, simple things on the surface, I had forgotten that when I was 21, I lost my eyesight in my left eye for a few hours, I was expected to have remembered such a small detail, one that I totally forgot until I was sitting answering questions during my diagnoses tests. I had also said that I didn’t have muscular skeletal pain, now, I know that was wrong, at the time I thought it was right. I can hear the questions of why from all, if you had been to doctors and hospitals repeatably and constantly told that there was nothing wrong with you, I believe most people would have answered the same. You eventually begin to believe that you are imagining it for some reason and that you don’t have muscular skeletal pain, just normal aches and pains. The result was that the mortgage wasn’t paid off and we couldn’t afford to move, so here we are in our one bedroom, second floor flat, which yes we love but is totally wrong for our needs.
The first news stories of the day were finding their way through the half awake mist of the morning, nothing seemed to have changed since yesterday so I headed for the kitchen and coffee. As the kettle boiled, Adams alarm started playing the annoying little tune that he has it set to play each day. Now we are both awake and both starting another normal day. Coffee, a slice of bread and a handful of tablets, with the addition of another cigarettes, forms what I call breakfast. Although the tablets include something to protect my stomach, I have found that I need to eat half a slice of bread, then take the tablets, followed by the other half of the bread. This process means that I have a slightly higher protection, stopping the acid feeling and by eating the second half after the tablets, helps to push the tablets down clearing my throat. My day has now really started as it won’t be long until the tablets start working and the pain is reduced to a level that allows me to type and allows me to have contact to the outside world. It is only 10 minutes from waking and I have already been in and seen, the entire scope of my physical world.