One of the comments left for my yesterday mentioned something I have often wondered if it is attached to my MS although it was left by someone who has Fibro, something else I also have. She referred to not being comfortable in large crowds, I remember have a growing in fear of being anywhere that I couldn’t see a clear exit or safe zone. Now that may sound mad when it comes to a person who worked with huge crowds during my DJ career, but there is one huge difference, a DJ is normally in an elevated position clear from the crowds and often in the bigger venues with a security guard placed an arm length away. Although it sounds back to front I also actually believe that my outlandish fashion sense and determination to look nothing like anyone else was also part of it. Once I was dressed and my make up done, I was able to hide inside a façade, a position that allowed me to put on a show of great confidence when in fact it allowed the real me to be as scared as I wanted, because no one could see it. I think the first real signs of my fear appeared when as a family we moved to Plymouth, I loved the place in the winter, but the summer was a nightmare, all the places I wanted to go were crawling with tourists. I couldn’t go to big stores or down the Hoe, just to make things worse I had two small children that I had to protect. It grew and grew until I would find anyway not to have to go shopping any more than absolutely necessary, food shopping became a monthly activity and only when I could find no other option. But still I hid it.
Strangely the first person to see through my act and to be totally aware of just how scared I was in crowds what Adam. I was 38 years old and here was my 20 year old fiance staring straight through it and getting me out of the crowd I just couldn’t deal with. We had gone with his mother and sitter to the opening of a new shopping centre, but when I found myself crushed in to a crowd of people all trying to get on the escalator, I suddenly found myself being turned round and heading to the door with Adam beside me guiding me the whole time. He felt and saw that I was terrified, so he just got me out of there without any questions. You don’t know how happy I was when suddenly I could shop as much as I wanted on line and there was now no reason to ever have to go back to a shop, far less a shopping centre. Nothing has ever happened to me to explain why I hate crowds, I just can’t manage them, the tension builds with every new face that appears and my need to get away, anywhere just grows. I really count myself as lucky that the internet generation appeared and that business after business embarrassed it. At first it was a blessing because of the crowd issues, now well we would starve if it wasn’t for the supermarkets doing all the work for me.
When I found out the amount of damage that my MS had done to my brain, I put my fear of crowds straight away as one of the victims of demyelination, I know that all to well that all my emotions are now heightened and clear to most as I can’t control tears, or anger, or anything else. I wish I had actually pined my Neurosurgeon to the wall and asked to not only see my scan, but for him to explain what damage the lesions were doing, all he ever said about it was that I had a really large number of lesions and of course they were and would cause me problems. All the psychological tests they did simply tracked the things I already knew, I honestly would have really have loved for them to sit their and point to each lesion and tell me what it’s position would really mean to me. I think that far to often doctors treat you by your NHS CHI number, not by the fact you are a person and as a person we have the right to know all that they do.
It is now a week since I was last able to sit or lie down without any pain or discomfort from my diaphragm, even when standing it has now also learned how to upset me, I can’t see how it could possibly be in spasm for that entire length of time, but I also have no memory of not being able to feel it and have pain from it. I would put money on it the 99% of the population wouldn’t be able to even put their finger in the right place if asked where they diaphragm was, far less to be able to track it round their entire body. The worst is still my left side, from the middle at the front right round to my spine has constantly been telling where it is. The strange thing is that on my right side it is just at the front for some reason, the rest of it, well it comes and goes, but to make up for it, it is my left lung that is causing me the most problems. Almost every movement seems to cause a reply in either pain inside my ribcage front or back in line with my breast, or more strangely on my side running up to my armpit and down the first 4 or 5 inches of my arm. There is no peace now, it just seems to go on and on and without any answer other than take more morphine, which yes I have already done this morning, I can’t help feeling thought that this pain is here to stay.
I have on task to do this morning, well actually probably this afternoon looking at the clock and that is to phone the post office and lodge a complaint. Even though I am here all the time, we occasionally get a letter marked that no one was here the day before to let them into the close so they can deliver, usually I just laugh it off. On Saturday we received a rather large number of letters and every single one had no entry marks on the back, the worst was claiming there had been no one here for the whole of last week! That to me is not funny, clearly the postman just couldn’t be bothered and went right past our block without even trying! I think it will be amusing though to see what excuse their complaints department can come up with.