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.

3 thoughts on “Let me sleep

  1. I was with my elderly friend at the weekend and he’s 103. At the moment his body is fighting an infection in his leg and all he wants to do it sleep and this is a constant frustration for him. Otherwise he is an amazingly positive person. I admire your courage to write this blog and feel we are living alongside you in your lows and not so lows. I’m sure your blog will help a lot of people… those who are suffering and those who try to understand. Bless you!

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  2. Seeing you describe your level of exhaustion makes me know I’m not alone. That is exactly how I feel on a daily basis. It’s been a year of being so tired I sometimes find it difficult to stay vertical for another moment. I was misdiagnosed with MS over a year ago. It turns out I was having mini strokes, due to a blood clotting disorder. I have been flirting with lupus since last August when I had a stroke that landed me in the hospital. My test results being all over the place, no one knows what is really wrong. I’m told my fatigue comes from one of my medications and I will just “need to learn to live with it.” God knows I try but it is very hard to go to work every day and have enough energy left to have some kind of life on the side.

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  3. I totally appreciate where you are coming from, I was luck with the company I worked for let me start earlier in the day, so I was in the office at around 6am, I then worked right through lunch and I was home early afternoon. This meant I was able to have a couple of hours sleep and awake enough to spend some time with my husband, before heading to bed around 10pm. It wasn’t ideal but without that change I was heading to bed at about 7pm every night. As time passed and my health got worse they allowed me to work from home part of the week and part in the office. My days at working from home of course cut out the time it took to get dressed and the commute, I worked totally from home for the last three year, but unfortunately I now no longer work at all.

    Have you discussed this at all with the company you work for? They might be more flexible than you think. It is always worth a try.

    I hope they manage soon to find out what is going on, as not knowing makes everything harder.

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