I woke yesterday evening, yes I said evening. I was woken by Adam when he came home from work at 6pm, I hadn’t set the alarm as I really thought that I wouldn’t sleep very long, wrong! But it put to test my what if, if I slept longer and later in the afternoon question, would I then be able to stay up later? What happens is nothing, other than what happens every other day, I went to bed and slept for 3 hours, getting up late, but I still went to bed at 8:30 last night, waking at 7am as I was desperate for the loo. When I woke at 6 yesterday, I expected to feel awake and somewhat refreshed but I found as all to often that I was once again sat there not really with it. Adam was even the one who had to suggest that I had some food as I was just sat there not really taking anything in, even though the news was on. So I ate and I hoped that the snippets of conversations would brighten me and lift me to the level that post 3 hours sleep I felt I should be, but it was more like I hadn’t slept at all. So here I am at 9:15 and for once I can say that not when I first got up, but for the last hour or so, I actually feel awake. My mind feels bright and able to get on with things, not the major list that waits to be tackled but to be able to mentally interact with life. I guess this also tells me that I need to fight less and sleep a bit more whether or not it is what I want to do.

Of all the things that my illness has done to me it is actually sleep that I struggle to deal with the most, I guess that that will be clear in everything I have written before. In all honesty I could deal with more pain easier than this constant demand that my body gives me for sleep. When you have always been a person who slept less than those around you, who would put more hours into everything than others did and never gave up on anything until it was completed. Well this in ability to stay awake long enough to start something, far less finish them, well it’s really hard to deal with. To find myself having to sleep more than 5 or 6 hrs a day, is just horrific, what am I supposed to do with just 9 hrs or less a day actually awake. I know many who would think that my position would be a cherished gift, and by far the best thing about this horrid illness, but to me it is the actual part of everything that I find to be truly disabling. Sometimes I really believe that if I could just stay awake I could actually find a way to start winning this battle of health.

I have thousands of bookmarked website that I have never found the energy or time to read, many are from when I first became ill and work was my limiter. I had to make my work better than anyone expected as I had to prove that illness wasn’t going to prevent me from being the best I could, just as I was before I had this tag placed on me. Most of them are sites about all the different illnesses that I have, sites I skimmed and found something worth a closer look, but I haven’t found time to go back to. I have been sent many over the years by people trying to help, but it’s been rare and now impossible to catch up with them all. In fact I ditched many a few weeks ago, simply because I have moved so far past the point where what they said might have helped, that there was no longer a use to keeping them. For years now time has been my greatest issue and nothing has changed, time still defeats me daily, stopping me from what I want to do, what I often need to do. All of us know what it is like on the odd occasion being so tired that the pile of work was are trying to get through just keeps growing, just as your need to sleep does. That for me is a daily issue, not once a day but all day, that’s why I am surprised to find my mind is awake and almost as bright as it used to be. I honestly would give up many many things just to be awake and able to deal with life. I am under no illusion that I will ever have that back truly, but well we have a right to dream.

I think I have checked the date a dozen times today, well not so much the date as the day of the week, Adam is snoring on the settee and it’s Thursday. He took the day off as today is his mothers birthday, an excuse to have a day off more than him actually seeing her. Mind you if he had actually told here that he wasn’t working today then there might have been a chance of them meeting for lunch or something. He is funny that way, he wants all the trappings of a family life, but the desire to do nothing is normally over powering. In some ways it was one of the ways we complemented each other as a partnership, he would sleep all morning in the weekends while I cleaned the rest of the house, then we had the afternoons and evenings together, it’s probably why he still thinks that houses clean themselves. Oh how I wish that was true!

Please read my blog from 2 years ago – 08/08/2012 – I ate well! I exercised! I became ill?

A second quite day is ahead if I can ever get Adam out of his bed, he is going out for the day as it is his Mums birthday, Adam and his sister and her girlfriend are all of on a cycling trip, an unusual way to spend…..