It’s going to be a mixed up week and I know that already, simply because Adam was off work yesterday, with him working for the local hospital he gets the local holidays, I can’t even keep up with the national ones, far less the local! Right at this moment I have lost a day and we are only on Tuesday. Things seem to be a little better this morning, I am more awake and less fuzzed up than I have been for a few days, but I am still a long way from what I would call normal. Everything is still very muddled and the constant physical rotating of pins and needles, burning and freezing is still driving me mad. I know that the three sensations are actually almost the same one as they never appear together and the points where the feeling terminates are identical. I can track them with ease as I have spent so much time recently trying to work out their trigger, all I can do is to back track them but apart from knowing their course, I still know little else. It’s really hard when nerves play up as they are so fine and go everywhere, unlike muscles you can’t attack them back with any success at all and often somehow land up making them worse. Most of yesterday afternoon and evening it was nerve pain that I found myself fighting with but from after my nap to right now, I am still having a lot of pain in my diaphragm again. The worst of it is on my left side just at the center edge of my ribcage, once again it is as though there is this solid fist sized area that won’t allow me to move without my ribs cutting into it. It is at it’s worst when sitting but when I lie down, well the whole lower half of my lung is once again turning itself just as solid. I don’t actually understand why it should feel so changed in it construction, how can a lung turn from something soft and normally unnoticed, into a lump of concrete you are constantly aware of?
I found myself yesterday thinking well back into my youth for some reason, I actually remembered with amazing clarity a day just before I was classed well enough to go back to school after having been off for several weeks with Glandular Fever. I could see myself so clearly, as in fact I can now, aged 11 and just standing in a door way of a shop in the city centre waiting in hope that some of my friends would pass that way on their way home at the end of the day. It was a long time before mobile phones and kids talking to each other constantly, back then all I could do was hope that it just might, maybe happen. I can actually even remember what I was wearing, flared jeans, a purple jumper and a much loved and missed black velvet coat that reached my feet, well it was the 70’s. The strange thing though it wasn’t just why I was there or what I was wearing that I could remember so clearly, it was also the fact that I could remember just how I felt and it wasn’t that far from how I feel now. I remember feeling just as weak and just as unable to really be in control of my own body, if I hadn’t been leaning against the door jam, I felt sure that I was going to fall, just as I do when ever I stand now. There was also a feeling that I know all to well these days and that is feeling disconnected from the real world, without enough energy to actually be bothered enough to really try to hard to reconnect. Glandular Fever was the worst illness of my childhood and due to that it is also the one I remember most. I had forgotten just how many feature of it that are actually similar to how both MS and Fibro make you feel. The constant weakness and aches and pains, the feeling of no energy and sleep being the only place you want to be. How one minute you were OK and would stand to find that there was nothing there inside to keep you on your feet and the long weeks of isolation, see know one and not being able to even try. I don’t know where the memory came from or why my mind felt the need to pull me back to that time but back there I went and it was somehow strangely comforting. I don’t know what it is about memories that do that to you, even the strangest ones as what comfort should there be in being ill and alone? but somehow there is. Maybe it is more the fact it was a simpler time when I personally didn’t have a care in the world, yes I was ill, but I wasn’t having to worry about bills or how my home looked. The strongest feeling I have from it is that despite all of what is there on the surface, I was happy and I continued to be through the years of abuse and struggle that followed not long after, just as I manage to be happy now. I guess it is partly my personality to be content in situations that others just couldn’t deal with, something inside me just accepts. There is a saying that life only gives you what you are able to deal with and in my life I think there has been a very strong truth in that. I know many with illness of the nature of mine, just can’t deal with it and fall in to deep depressions, but I sit, smile and contently just get on with it. I wish I knew why as I would pass it on to everyone as if asked I would list it highest in my personality traits, able to find contentment in adversity, an odd one but a good one to have.
When I took my medications last night I discovered that somehow I didn’t have a replacement for my inhaler, I guess with it being new on my list of meds they only sent one instead of two, so this morning I have to get through to the doctors and order another. I have been trying now for the past hour, with everything closed yesterday and Tuesday being a half day for the surgery, all I am getting is an engaged tone. I have never understood why they close on a Tuesday afternoon, unless it is to allow them to stay open late at some other point, but I am very much with the government for the need for doctors to change the way they work. I actually heard them say on the News today one of the things I have been suggesting for a really long time and that is consultation over skype. Right now just needing a prescription which is on repeat, why can’t I just email them for it, rather than waist mine and there time with phone calls. There are so many small and quick changes that I as a user of the NHS can see and I bet that almost everyone else out there also have at least one as well. Might it not actually be a good idea for there to be an online suggestion box if you like, but I would suggest it more as a list for different area’s where both the public and NHS staff could give their suggestions, if the one you have thought of is already there then it could have a like button, so the strength of feeling could also be judged. With Adam working in the hospital and the stories he tells me, I as an ex manager can see multiple places where cost saving could be incredibly easy. Fresh eyes on a situation so often see what others miss and with the policy of promoting from within, where are those fresh eyes?