I am completely out of my norm today. Last night I took the first dose of the new med that the doctor prescribed for me to help to clear my bowel and although like most liquid meds it tasted rather horrid, I was actually not too sure if I needed to take it. After all I had had two small movements without it, it was possible that the rest might follow soon, but I decided to go for it after all I had nothing to lose other than what I wanted to be gone. I woke at 6:30 this morning, knowing where my first stop was going to be and I had been there twice since, but I am so tired that I know without a doubt that last night’s medicine had meant that I didn’t have the best nights sleep, in fact, I don’t even feel as though I am even well rested. I hate feeling like this, it isn’t that I feel ill, but it makes me feel as though I can and could do absolutely nothing and I do mean absolutely nothing. I have found myself over and over already today, just sitting doing nothing and actually thinking almost nothing as well. It is one of those things that happens simply because of the mess in my brain, but add in normal everyday tiredness and the result is this half alive zombie who had no desire to even bother moving. On days like today, I find myself doing little other than telling myself off, as I am wasting a perfectly good day and perfectly good time, time that I am not in pain or distressed by anything, just so laid back that I would feel safer horizontal. It is a really odd floaty feeling and that is a sensation I have never been good with, it is the main reason that I won’t even consider trying cannabis for the pain I am in. I know that many people say that it has been a wonder drug for them, but my experiences of it firstly as a teenager and then once when I was in my late twenties, was that firstly I had this odd sensation of not being in control or floaty, followed closely by a strong desire to sleep, something I already do too much off. Despite having many friends over the years who have offered it to me on various occasions, I just won’t touch the stuff as I hate feeling like that, it’s also the reason that I rarely get drunk and when I do, it has always been by accident.

Finding myself not fully in control happens occasionally and always in the morning. I normally like today blame it on a bad nights sleep, but I actually do have another theory as to what might just be happening other than being tired. It does have something to do with sleep but in a different way than waking up tired. I don’t know enough about the natural painkillers we all have inside us, but I am wondering if my overnight pain and discomfort could possibly trigger an over production of them, as part of my body trying to keep me asleep where I need to be and partly because my body is resting and not doing or dealing with my normal daytime activities. I started thinking about it as it would also answer two other things that happen on days like today. The first I already hinted at, I wake up like this but it eases and eventually vanishes as the day goes on, tiredness doesn’t do that, well at least it doesn’t without sleep. Secondly, I have noticed that although I still feel the worst spasm if they happen, the milder ones where the muscles tense to about the half way then subside again always seem to be missing. Along with that, there is the constant spasm in my diaphragm it actually softens, it doesn’t go away, but it isn’t as tight as normal. As the morning goes on, everything slowly returns to normal and the day continues as any other day, it just has that horrid start that is so disconcerting, fingers crossed this one follows the normal pattern. If I needed any more proof, well the clock just struck 10 am, which means that extra hour I had at the start of my day has already totally vanished, spent staring into space.

I was beginning to feel cold so I just went and lit the fire, something I have to admit I find hard these days as I have to bend quite far, but without crouching to far, as if I do I land up on the floor. My legs just don’t have the strength to push me back upright so it is a case of judging how long I can remain in that position, rather than a case of staying there until the fire is lit. I have often found myself taking a couple of hours to light it, simply because I have had to come back here and rest before being able to try again. It has a quartz lighter that is hidden right down at floor level and doesn’t always light the gas first time, then you have to hold it until the pilot has heated the element enough to keep it lit, easy when we bought it, now a total nightmare. If it didn’t cost so much I would leave the pilot lit, but I worked our it’s true cost years ago and was shocked them that the pilot alone was costing more than the gas we use for cooking, it has been unlit ever since. The cost now isn’t financial, but in the pain it causes in both my legs and the arm that has to do the work. Honestly, it is stupid little things like this that the design world has a lot to answer for. Twenty minutes after lighting it and I can still feel every muscle that I used screaming at me in disgust as to what I just put them through. Nothing in life is easy any longer, in so many ways I wish that when I was buying things for our home, that I had truly known the impact on daily life from just what is around me, was going to be. To be fair on myself though, we did buy the fire and install the kitchen before my diagnosis and I like everyone else on this planet, bought everything based firstly on look, then on cost. But I honestly think that everything should be designed for those who can’t, as those who can, would still be able to use it as well. Oddly though, I think that that is something that is going to happen, not in my lifetime, but I can see the reasons why it will. With the ability to keep people alive longer and longer, unless they also manage to ensure that they somehow remain fitter than they do at the moment, the world is going to have to change so they can keep their independence. It is a fact, that people including designers have half the problem of putting themselves in the shoes of the elderly than they do when it comes to imagining themselves being disabled. As they see the issues that their parents and relatives have and to keep themselves from having to do everything for them, well designs of everyday items will contain a growing element of ease of use. Redesigning the world for a rapidly growing aging population will as a side effect make the world a friendlier place for those like me who are disabled. I know already that my life is a million times better than it would have been 50 years ago, 50 years from now and I doubt I would be housebound or in need of so much help just to do something like lighting the fire.

Please read my blog from 2 years ago today – 21/02/13 – Adjust or sleep? 

I didn’t want to get up this morning, I just wanted to switch the alarm off and go back to sleep, really not me. At first I wasn’t sure where that desire to switch off again was coming from. I wasn’t any more tired than any other day, I realized……..