There is a brick wall that is now clearly part of my life. It hides well for many hours to the point that I believe I have defeated it, then bang, it’s back. I guess it is now about 6 weeks since it started and I have mentioned it several times in my posts, giving it either a good or a bad spin, depending on how I feel that day. Well today it isn’t going to be spun in any direction as this has now moved into the position of fact. I haven’t been able to get far past 9pm and occasionally earlier without going to bed. Last night at 8:45 I went to the kitchen and was happy to find that while I was getting my glass of coke that I felt really OK and that I would be able to stay up and watch the new Attenborough documentary, Africa. Less than 20 minutes later I was having trouble putting words together and what I could say was slurred and labored. What I don’t get is the speed that it hits with, I am being totally honest in saying that it is like standing at the top of a snow covered slope, jumping on a sledge and sleep hits in the seconds it takes to finding myself at the bottom. All day long I know if I went to bed I would go to sleep but that is a different thing, this isn’t a case of background tiredness, this is full on if I don’t lie down I will sleep where I am. Nothing has changed in my medication so I can’t blame that nor am I drinking more, actually I am drinking less. So last night just after 9pm I was once again asleep in my bed, out of everything until the alarm goes off.
To have lost another hour or two out of my day is hard to accept, especially as I treasure those hours as time I spend with Adam. Evening to me are important and it almost feels like my MS has gone out of it’s way to find something new to hurt me with, well it has. I spoke to Adam about it last night and he like me is well aware that it is happening but he had nothing to blame it on, any more than I do. It is all very well to say I just have to put up with it but as you may have noticed in the last few weeks it is an issue for me. I often talk thing through here so that I can get to grips with them or so that I can explain how I feel to others, this is a case of both. This is a sudden and unexpected change, one that I hadn’t ever really thought about happening and it did suddenly, no gradual change, just a sudden and extreme one.
Imagine that you suddenly lost 2 or 3 hours a day, everyday from being able to spend with your family. When you spend your days working, and your time with the people you love is precious, it is even more so when that is the only time you see and speak to another human being. Life suddenly goes from spending between 4 and 6 hours everyday happy and interactive in your world, now if you manage to get 3 hours, you are lucky. Would that be enough for you? It is already beginning to feel as thought Adam and I simply pass each other each day, that our contact is so limited, it is becoming like we simply share the same place to live, rather than our lives. We kiss to say good morning and we kiss to say good night, but the actual time together is getting less and less and all because my body has stolen yet more of it. Yes it makes me sad and yes it makes me angry, but when you can’t fight it what can you do? I suppose one of the things that worries me right now is will I loose more. I had thought it was just a phase that would sort itself out, but it has being going on now for too long for it to be a phase, nearly 2 months seems rather permanent to me. I suppose now I need to try and find away of dealing with this, I am not happy as things are but I don’t know how to change it and how to make it work for both of us. I suppose by realizing head on that this is an issue is a start, but it is a hard issue to find a solution to, how do you fight your body going to sleep.