Let me sleep

I know already that today is going to be one of those days where the pain levels are going to over ride my every action and thought. I was already in place before it was time for me to get up, it is rare for me to wake before the alarm and I was clearly still tired as even less likely I actually went back to sleep, something that normally never happens. I have always been amazed by my ability to sleep through pain which when I am awake I find hard to handle. It is either the strength of the medication that I take or a blessing that come with MS, either way I am glad it is that way. I have often wondered if I just didn’t get up, how long I could actually sleep without difficulty. I don’t remember the last time that felt totally awake or even half awake, I just always feel as though I want to lie down and rest if not properly sleep. I suppose the best way to describe how I feel all the time is how you would feel about an hour before you finally give up and go to bed. Sometimes it is hard to just get round to finding the energy to get up and fetch a glass of coke, a feeling that if I do stand I will just go to sleep on my feet.

To me through out the early years of not knowing I had MS but knowing I wasn’t well that really pulled me down, like most I was at the start my MS was relapse remitting and as I said before the problem in getting diagnosed was I was in remission when I was sent to see a Specialist. For the first few years then pain was there but not badly it was more like the aches of a flue, but when you are trying to look after a young child having no energy is a huge handicap. Getting my GP to say anything other than that “all young mothers are tired” was impossible. Right the way through the main thing I have always said was making life hard was the tiredness, they even put me one Modafinil for a year, at the top level, I know that fighter pilots take it to keep themselves alert of long distant flights, but I could happily fall into a deep sleep an hour after taking it. Spending your life not quite there and wanting to be somewhere else, is odd but that’s the reality.

Today when I woke before the alarm all I could feel was intense pain and I couldn’t even roll over, there was a huge battle going on where I needed to go back to sleep and my body was equally screaming your in pain. When I did get up well it was no surprise that I found it at first to much to walk through to the living room, when the TV played up well I kind of lost it, not a good start to the day. I thought it was picking up when the shopping arrived early and all of it was there, but well the pain and the tiredness has wiped that out. It is clearly a day that isn’t going to get better but well that isn’t new and anyone out there with MS will tell you this is a below average day, but not the worst. So I will put a smile back on my face and stop feeling sorry for myself mainly because I am tired, it still to this day pulls me down.

Wheels for the brain

I am still finding staying awake a little on the hard side just now, last night just like the last few I was in bed before 9:30 and still asleep when the alarm went off, add in my 2hrs in the afternoon and well my awake time is becoming very limited to say the least. When awake I feel drained and given the freedom that I don’t allow myself to simply climb back into bed, that is were I would be right now. I know a lot of people really don’t understand why I won’t give in and just go to bed if that is what my body needs, I have spoke before about the routine that is needed but it is also something else and that is maintaining normality. I really don’t want to turn my world up side down and sleep odd hours, I have a need to stay in line with the way my life has been for the majority of my life. The only time I changed it was due to work, when I was a DJ I worked mainly between 7pm and 3am, so I had to switch it but as soon as I gave up that life style I set my alarm for morning and that is were it has stayed. I have a need to still have some discipline in my life, to have set times to do things and for those time to be what I would call normal. I might have it totally wrong but I really think if I let my illness dictate how much time and when that time is to be awake, I would be finding everything harder and harder.

I suspect part of the reason I fight to stay awake is that I am very aware there will be a point when I won’t have the strength to actually fight it, and at that point I will have to give in. I think that I may push myself to do a lot of things for that reason, simply the awareness that one day the choice will be gone and there is a huge desire not to give into it before that time comes. I suspect there is also a large amount of wanting something to be NORMAL, I really hate that world but there is often no other that I can replace it with, yes I want things to be normal.

I have been very much forced over the last couple of weeks to admit that I am past the tip point, I think in many ways it has been harder to admit that than it was to admit I had hit the point where I needed a wheelchair. I had struggled for several years to get around on my own two legs and a walking stick. Where I worked was a standard call center, a long room that I couldn’t walk form one end to the other without having to stop and rest, if when I finished work I couldn’t get a taxi, I was stranded trying to stand until one became available, and I had turned myself in to almost housebound as I couldn’t entertain the idea of going any where due to pain and exhaustion. It is hard to admit you have to give up your legs for wheels but I can assure anyone that is facing that right now that they should stop fighting and just take it. It really changed my life, it was the most wonderful thing I had been given for years.

Admitting that you are now mentally not up to surviving everyday life is much harder, there is no gadget that can help me like my chair did, this is harder because the world can’t give me something to make up for what I have lost. Unlike being unable to walk when I just stop because my legs have had enough, I can’t stop my brain rest it and start again, it just doesn’t work that way. I can see already that as I have tried all the normal memory prompts and gizmo’s and I have gone past being helped by them, I am on my own in many ways. I thought about having someone coming into the house to help me with somethings but don’t need physical help I need a brain that works, someone being here would aggravate me as I wouldn’t feel able to do what I do when I want to. I would find having to talk a trial and I would fret about my home not being perfectly correct and tidy all the time. So I am stuck! As I said I am over the tipping point but still holding on with my fingernails to prevent a fast slide downwards. Without doubt this is the hardest thing I have come up against and it is going to take time, a lot of time to know how I get round or past this. How this will unfold only time will tell.