It is only, 7:27am, extremely early, well it would be if I hadn’t been awake since just after 3am. I woke again as I did the other day with mad sensations, throughout my entire body, not painful, but when your skin is alive and burning, sleep doesn’t come easily. I did try, in fact, I lay there for half an hour before getting up for a cigarette in the hope that just being upright and moving would be enough to disrupt it. I thought it had worked to some extent as I went back to bed, but found quite quickly after I lay down that it had made no difference at all. I tried to lie there and at the very least get some rest, but it wasn’t working, the only logical step was to get up for a while at least. My plan is that once I have written this, taken my daytime meds and had my breakfast, than I will go back to bed and hopefully sleep for a couple of hours, having done all I usually would in the morning. I need to get some more sleep not just because I am tired, but there is a big downside to feeling like I do, I know pain that I can’t control, won’t be far away.
It seems to be one of those weeks where I am going to win at nothing, on Monday I discovered that the new E-cig battery I had bought wasn’t working, I think but can’t be sure that it wasn’t my fault. I had filled the tank, but when I picked it up to use it a few drips of oil escaped from just below the clear section, it wasn’t screwed in as tightly as it should be. On Tuesday it stopped working, I think that the oil had managed to get in through the start button, so I bit the bullet and went online and bought two new batteries giving me not just the one I need, but a backup as well. The new ones arrived yesterday and I set the first one up to charge, all went fine until I tried to use it, it didn’t work. I opened the second and it wouldn’t even take a charge, luckily the company is going to send me replacements, which they are going to check before sending, I will return the three I have for them to send back to the makers.
I know it is on the surface something small and silly, but it is just something I could have done without this week. It feels like a huge hassle when all I actually have to do is pack them up and hand it to Adam to post, but when you feel like death warmed up and even just being alive, too much to deal with, well even that simple step sounds like a visit to hell. Part of me is telling me to give myself a good hard kick up the backside and just get on with things, but the other side of me is saying don’t be so stupid. Anyone who lives with MS will tell you that is actually the most stupid thing you can do, pushing yourself actually always makes things worse. Those energy bars don’t just tick up by having a little rest and a cup of coffee, it just doesn’t work that way. I used to be able like most people to make myself get on with things, tired or not I always had that reserve and the life long theory of sooner started, sooner done. No matter how tired I was I found enough to complete everything and then and only then, did I allow myself to stop and relax or sleep. These days the energy level I feel at any point in the day, even when I get up, is all there will be for that day, sleep or not, it never rises. If you push MS it pushes back at you, it is like being on a tightrope and when the shove is thrown back at you, there is only one place you will go, that’s down.
I just heard on the new a discussion over something going in front of the European courts today, it is a case that was raised by someone in Belgium who was sacked from his job as he had become so overweight that he could no longer perform his job. The court today are going to rule if being obese should be seen as a disability, giving everyone who is the same rights as I or any other disabled person has as an employee. I have to say that although I know how difficult some people find it to loose weight, I took a great deal of exception to even the suggestion that such a thing could possibly happen. The doctor who was there to give the medical profession’s view on this, actually even used the example of someone who is paralysed by MS, as being a person she thought would be outraged by it. She also said something else that I think is equally valid and could possibly actually happen, that a person might actually gaining half a stone in weight, so they were obese enough and could then apply for a blue badge so they could park their car anywhere, as disabled people already can. Personally, I have heard some mad things going to the European courts, but this has to be one of the maddest and I truly hope it is treated as being as ridiculous as it clearly is to anyone who is truly disabled like myself.
Adam has just emerged from the shower and will be off to work in minutes so I am going to close for today as I need my breakfast and more than anything I really need to go back to my bed, maybe when I wake I will find that I am living in a slightly more logical world and reality will have returned.
Please read my blog from 2 years ago today – 12/06/12 – The Nurses move in.
It has arrived, the day when I had to face the fact of what I knew would happen, is happening. I have just poured myself a malt Whisky, no I am not celebrating I poured it simply because I feel I need it. I don’t normally drink alcohol before 6pm but this isn’t a normal day, because today is the day that……