My long awaited letter from the hospital arrived yesterday, I was totally not surprised by the fact that they hadn’t looked at my notes at all as they had given me an appointment for 5pm on the 20th of this months. If they had just looked they would have seen that I have to use hospital transport to get me to and from the hospital, which means if I want to get home that day, I need a morning appointment. Hospital transport may be free, but when you can’t get out of the house without two men and a stairclimber, well it is essential. The downfall is the fact that like most things it is underfunded and there just aren’t enough ambulances, especially ones with stair climbers, which in a city that is famous for its tenement flats, is madness. I have only been to the hospital a handful of times since I have become housebound, but I have already been stuck in the position of them having to keep the hospital open just for me twice, because they didn’t have an ambulance available to take me home earlier. Adam has taken the letter with him so that he can get the appointment changed for me, I just hope that it doesn’t mean I have to wait more than another week or so past the date on the letter.

Yesterday was a nightmare, the pain just drove me mad all day and it was so bad when I woke at midnight that I took another booster pill. I didn’t have any vivid dreams, but I honestly didn’t sleep well for the rest of the night, in fact, in total I was up four times, each time I woke, booster or not, I was either in pain or so uncomfortable that I couldn’t remain in bed. Between the pain around my right kidney and the feeling of solidness in my back covering the lower part of my left lung, I didn’t know what to do with myself. When I woke for the fifth time just before 7am, I gave up and just got dressed and came through here. I am sure that part of the problem was everything that I put in my post yesterday was still running around in my head, there is so much that I need to sort out and so much that I need to adjust to, a few broken nights sleep wouldn’t be something that would surprise me at all. I wish that it was possible to just shut our brains off when it comes to night time, that there was some kind of switch that we could just flick and then peaceful sleep would be possible. Mind you, if I had a switch for everything that I would like to turn off, I would have a control panel bigger than myself.

I don’t often do so, but today before I started to write I reread yesterday’s post. I don’t do it for some very good reasons, firstly I prefer to write with a fresh eye on every day, not one that is tainted by the day before as I honestly don’t remember all that I write. Yes, I remember the subject but not the words, the phrasings and so on. Secondly, I don’t read it as although this blog is one huge work, it is a day by day, not a continuance of what has gone before. Every post is exactly what is happening or is in my mind that day, the day before is gone, it’s written about and it’s closed, but today, today I felt a need to read it and when I read the final paragraph, I cried, the third reason I don’t often read back what I have written. I have this odd ability to write from the heart and when I read it on the day I write, it is fresh and it is clean so there are rarely tears, but the next day what I read is very different from what I remember writing. I cried because it was true, too true, I cried because it poked into me like someone sticking their finger into my heart as I watched. The whole piece screamed out one thing I have said over and over about not being told the truth, or even advised of the worst case scenario. I know that some prefer to not know, but I am not that kind of person, I would rather someone said this is what may well happen but if you are lucky it won’t, I hate being patted on the head and that to me is what the doctors do all too often. If I had been told that my future might include all that is happening to me now, well I wouldn’t be going through any of this. Sorry for saying all that again, but sometimes the truth has to be shouted and shouted until someone out there listens.

When you look at a list of chronic illnesses anyone can see that the majority are actually autoimmune conditions, which I believe is one of the reasons why all this is so hard to accept. If I had been in some kind of accident, or it was all being caused by a virus or something like cancer, I think it would all be that bit more easy to handle. Just knowing that it is my own body that is the cause of what is happening, that my own body is killing itself without it bothering to ask for permission or being able to switch it off or even change it, is the hardest thing to accept. The monster I am fighting, is me, myself and that makes it so much harder. When you catch a cold or have some other illness that is triggered by outside factors, you can visualise it as the enemy, give it a face, a voice, it’s own personality and when you can see it, you can fight it, I am looking in a mirror. I did this to me, I did it not something else, I can’t even blame my parents for giving me some faulty gene, although the doctors are still holding on to it as a slight possibility, but for now everything always comes back to me. How do you fight yourself? How do you combat something that is part of you without driving yourself totally insane?

I sat last night in the kitchen, as I always do when I am woken at night. As I sat there smoking yet another cigarette, all I could think about was the irony of the fact that everyone always told me that they would be the thing to kill me. That if I didn’t give up smoking, I would get cancer and I would die, and I always told them that when I did, I was to be buried with 200 cigarettes and a lighter, just in case I beat the odds and I was still alive. Here I am after 41 years of smoking anything from 20 to 80 a day and the inside of my lungs are still reasonably fine, it is the muscles the things that can’t be changed by cigarettes that actually are killing me. I don’t have the slightest problem smoking, it doesn’t hurt, I hardly cough and there I was enjoying my cigarette despite my Emphysema, yes I was shallow breathing, but that was to keep the pain down from my PRMS. I almost bet I could have smoked even more and still could be, without it being the thing that would beat me, they aren’t the monster everyone warned me about, I am. I sat there, thinking, as I felt the pain in my left lung pushing inwards, the points of pain in my back below my shoulder blade on the right side and the more I felt it and the longer I sat, the more I knew that there was nothing I could do about it. I was full of Morphine, reasonably rested and yet nothing had changed from the day before not even what was in my head, or at least that was what I thought.

Rereading this morning showed me just how wrong that was, what is in my head has changed, writing yesterday ordered those thoughts, I don’t have the answers to it all, but I am moving forward. Writing allows you to do that, even when you don’t know it is happening or what exactly you have written. It clears out those dusty corners and puts a shiny star over what is important, it’s those stars that make the difference, they are the guideline for me to follow. Yesterday, I wrote that I would get there, today I believe it.

Read my blog from 2 years ago today – 6/05/13 – A cobbled together way round

It’s a bank holiday Monday and like all bank holidays a day that will in general, be more boring than any Sunday. I have always found them to be the most pointless of public holidays and I was really glad when in my last job my suggestion of working through as normal for those who wanted to, then being allowed to take the day when it suited them was adopted. I think we are well past the time when holidays of…….