Slowing down was supposed to give me more time to rest, time to recover and to possibly feel, just a little like myself. Unfortunately, whatever is going on with my sleep patterns, is causing me to be so tired, that I don’t feel any better at all. The last few days have passed in a dozy haze, with me fighting to stay not so much awake, as in contact with reality. My mornings have been spent tweeting, my afternoons, playing card games, the simplest ones I can find as the complex ones, are just too much for me. I have been switching around between three different games of patience or solitaire as some call it. Which one depends on just one thing, can my brain stay focused on what I’m doing. For weeks now, I have been blaming it all on just my diminishing brain, but I had to admit the other day, that sleep has to be playing a huge part. I can’t remember now when I last had a full nights sleep. Every single one is interspersed with sessions of finding myself sat on the edge of the bed, fighting to wake up. Last night, I had my third incident of waking up somewhere I shouldn’t have been asleep. This time, I hadn’t even made it out of the bedroom, just as far as sitting in my chair and taking the breaks off, but I had gone nowhere, other than back to sleep.

When I am awake, I am missing more and more things, things I believe wholeheartedly that I have done, or seen, but on investigation, I haven’t done at all. It sometimes feels as though I am living in two worlds, the one that is in my head, which says everything is working perfectly and the other that says I am missing out huge chunks of reality. The only explanation I can come up with is that I am asleep, and dreaming in real-time, whatever it is I was supposed to be doing. Whatever is going on, all I know is that sleep is taking over my life and I quite simply can’t get enough of it.

I don’t know if it is going to help or not, but next week, I will be changing carer agencies, and it will also be the first time, that I am going to have someone other than Adam, here with me at lunchtime. The new agency is going to bring my first carer here on Friday morning to meet me before they even start. They have promised me a sole carer for the first couple of weeks, then they will interduce a second one, so they can switch about. That alone is so different from the first agency, this one seems to really care that I am happy with the people who will be helping me and that they are happy with me. The agency I have been with to date, couldn’t care less. They just care about making sure that someone, anyone, is here to cover the slot. They don’t see me as a person or cared about my feelings at all.

To start with, I have asked them to only be here three days a week at lunchtime, plus the two showers sessions I already have. I know I initially said that I was going to have them here ever lunchtime, but as it got closer, I became scared. Scared that I was loosing too much independence too quickly. I can have a cold lunch twice a week, or if Adam wants to come down on one or both of those days great, but I need to not have strangers here every day, not yet. Handing over your life to others is hard, no matter how much you need their help, if you’re not ready, it’s not going to help, it’s going to rub you up the wrong way. I need to take baby steps and when I am ready, I will ask for them to be here more. If my life keeps spiraling down as it is, I doubt that it will be long before I ask for them to be here to help me manage other things as well.

Being ill is hard work. It’s incredibly hard work and I know that sounds mad, but the worse that my health gets, the worse my ability to just deal with life seems to get as well. At times, the silliest things seem to get to you. It doesn’t happen often, but there are days when I look at all my meds, and I just want to throw then out the window, not into the bin, but out the window. If I put them in the bin, Adam would just take them out again. We have this amazingly boggy back garden and if at this time of the year, I launched them out of the kitchen window, they would land in the mud and would become totally unusable. For some reason, those tablets, not my wheelchair, my nappies or any of the other stuff that fills my home, all those tablets, are the symbol of everything that is wrong with me. They screw up my day, my nights and my life, but I couldn’t live without them. I resent the time that I spend stuck breathing through my nebuliser, the time I have to spend trying to swallow tablets, but instead just getting them stuck in my throat. They fill up cupboards and draws, they are everywhere that I look, because they have to be everywhere, that I might be. There are days when I feel like all my life is, one long series of drugs.

I know that I don’t have a right to complain, as there are so many people out there who have to pay for those drugs and can’t afford them. I get them all free and if I didn’t have them, my life would be hell, but still, at times, I resent them. When did I become such an ungrateful bitch? I’m not ungrateful, I am so grateful that I have them, but is it so surprising that I just want to be free of them. God knows how I would manage them all if I wasn’t housebound. It was bad enough when I was still working, but back then, I was on just a fraction of what I am now. As I become less and less able to remember, less and less able to even recognise them from each other, the more confused I become, the more I don’t want to take them. The chemist doesn’t help as almost every new prescription brings a new name I don’t know on a new box I’ve never seen before. Not because my drugs have changed, but because the chemist has sent the least expensive version they can buy. I’m so glad that Adam deals with them now, as I can’t make any sense of them any longer.

They are just an element, one that is now out of my hands, but still somehow makes my life harder. Being ill is hard work, far harder than you can ever imagine until you are living right here in the middle of it. It doesn’t matter if it’s my meds, having a shower, eating, or just trying to sleep, every element is hard work, so why am I still shocked by the fact I’m so tired?

Please read my blog from 2 years ago today – 19/10/2014 – Time to stop

I have just spent half an hour being drive mad by Twitter, there is some sort of problem with there security shut down on accounts, it keeps telling me my account has been hacked and I need to change my password, in seconds it does it again. Of course, that means you have to wait for the email…..