There is one thing on my mind today and that is comfort, it doesn’t seem to exist and it is also one of the hardest things to not think about or block. We all know what is like to just not be able to find a comfortable position, to keep moving, changing angle and pressure points over and over again, but without the slightest change that lasts for more than a few seconds. Those evenings spent in the cinema trying to enjoy a film you have been waiting to see, but the comfort monster has you in its grip and as hard as you try to stay still, to not spoil the film for those around you, you can’t. You spend the whole film squirming around, moving back and forward and side to side, but nothing works, nowhere in that seat you have to sit on is there a single spot that just works for all of you. It is something so basic and so everyday that most of us don’t realise just how often it happens, but imagine having that problem almost everyday and for almost every minute that you are awake, you just entered my world. Most of the time just like pain I get on with it, but like so many things there are those days when you just can’t, it fills your mind and dominates ever single thought, that day is today.

Second to pain and usually due to it, comfort is honestly one of the biggest issues I have in daily life. Days like today always start with trying to relieve pain, those small adjustments start because of a spam but to ease it you land up putting pressure where pressure shouldn’t be, the ball is now rolling and so are you, ones side to another, finding seconds of relief followed not long after, by growing pain that makes you move again and then another spasm. It is also part of the reason that I no longer get dressed every day, I don’t need the added issue of straps, bands or belts making sitting any worse than it is. When I was still working I found a look that worked for the office, but allowed me the comfort that I needed, I took to wearing black knitted dresses, with tights and a body suit rather than separate pieces of underwear. I even ditched the shoes and replaced them with knee high suede boots, as they too didn’t have any points that could cause me pain in any way. Everything had smooth lines and caused as few pressure points as possible while I was sat in my wheelchair. But even with all that care, the first thing I always did when I came home, was to get rid of all of it and replace it with a nightdress and dressing gown. Comfort became the most important thing when it came to how I looked, a big change from my earlier years. Strangely it took me a long time to actually give in and a long time to get past a mental block I had, that the only people who go for comfort overlook, are the elderly.

Last night I had a pain like none I have ever had before, it lasted for about 2 or 3 minutes, but I found myself lying there just letting it wash over me as there was nothing else that I could do. To date I have always said that the worst pain I have ever had in my life was when I had pneumonia, it was like nothing that I can describe and I was beyond grateful when they took me into hospital and filled me full of morphine, I had gone through 2 days of it at home and there was nowhere I could have managed any more. Last night I know was nothing more than a spasm but I have never had a spasm like it, I took over the lower three intercostal muscles right around my body and well if pneumonia was my level 10 pain, I now know that what level 11 or possibly 12 is. How or why the pain was so bad I have no idea, I had taken all my normal drugs so there shouldn’t have been anything like that level of pain, I couldn’t even manage to take my booster at first as I just didn’t know how to move, it was just too painful. I know it only lasted a short time, but it was, long enough, believe me, that was the only good thing I can say for it and once I had taken my booster it didn’t happen again. Pain like that is rare, I haven’t had anything close to that level before, but I have noticed over the last few weeks that my pain levels, in general, are rising, just as I mentioned a few days ago, are my problems with balance. I have had a general feeling for weeks now that things are getting worse and this is just another sign that I am right.

It’s is easy to just say oh that was a one off, that other thing well it was a one off and to keep doing that, but when you have a list of one off’s well you have to pay attention. It is another one of those things that you just don’t know what to do, how many little things or even big things do you have to have before you put it down as a clear progression. No one ever tells you what are the things to look out for, what changes do you need to have ticked off before it’s a change and not just one of those things. I know that most of my conditions don’t have a laid out plan that they follow, but it would just be nice to have one thing that I can be sure of or know for certain. For now, all I can do is just keep taking the tablets and keep a note of what happens next.

Please read my blog from 2 years ago today 22/03/12 – Crystal Tips and Alasdair

I always used to wonder why almost every little old lady had curly hair, when the majority of younger people had straight hair, including me. My conclusion was that there was this point when there had to be a law that meant they all had their hair permed. As I got older I wondered a little less as my conclusion seemed to be confirmed, you could see quite clearly passing any hairdressers that I was right, then I realised there is a difference between perming curlers and rollers. I had to think again because I saw so many who clearly couldn’t afford the constant visits to the hairdresser, at lest not the twice a week sessions required to keep set hair…….