Much to my surprise I managed to dye my hair without covering myself and the entire kitchen in purple dye. In fact it was really easy due to the fact I hadn’t dyed it for so long, there was nearly 2 inches of natural heavily greyed hair, unlike trying to deal with less than half an inch, it meant that I didn’t have to worry so much about over dyeing the hair from the past sessions and damaging it more than necessary. Mind you I can’t see many women walking around with 2 inches of grey, which was totally impossible to disguise. My body was also so on my side, it is a really rare thing to happen, but I actually enjoyed my shower. Usually it is something I dread, especially when I am washing my hair, but yesterday instead of sending pain searing through my scalp and brain, it allowed me to let the warm water pass through my hair without any pain at all. I was able to really take pleasure from it and I found, for some reason I can’t work out, that I was dragged back to my childhood, when I swam daily. It was followed by the joy of the shower, something we didn’t actually have at home back then. The shower area was placed in the corner of the changing room, all of them where on a timer, three minutes from pressing the button, it cut out again. There was on special place I liked the best, in the corner, there you could have 2 showers pouring warm water over you, while you stood on the bobbled tiles, designed to stop you from slipping, but many still did. I even found myself not just able to feel the tiles, but I was able to smell the chlorine, something that there definitely wasn’t any of in the room yesterday. I don’t know what has triggered this new ability to feel, smell and believe that I am some where else has come from, but I have to say I am enjoying some of it, not all, but some. Who needs the movies when your own mind has developed the ability to take your dreams, interests and history, playing them out with a huge dash of reality.
I have to admit I am actually for the first time looking forward to seeing the Doctor on Monday, to date I have dreaded all the trips out, thanks to a mixture of hating the stair climber, the waiting around, this time I want to see them. I don’t know what I expect them to be able to do for me, as personally I can’t think of anything else they can do, but I have this hope and belief that something can be done. I know I could be setting myself up for a fall, but with the fact that the condition of my lungs has changed so much since June, there has to be something they can to. I don’t understand even were this belief and hope has come from, as my personal history tells me that I will come home on Monday without even the tiniest bit of help, other than possibly another set of painkillers. It’s mad how for so many years went by when no one believed there was anything wrong with me, all I ever got were painkillers. Then they started naming the different things they diagnosed, they gave me more painkillers. Each specialist I have seen has found a new condition, which means I now have a long list of condition names, but nothing else has changed, other than the painkillers being increased and extra pills being added for individual symptoms, so why is I am sat here right now with a belief that this isn’t going to happen again on Monday? It is an unfortunate truth that the majority of illnesses seem to have no cure, or even something that will keep it at bay, other than painkillers.
I have been trying to sort out in my head all the things I need to talk to the doctor about, I have this horrid feeling that the usual will happen, yes I will remember, possibly with Adams help the main things, but I won’t be able to put it into words that really describe how it is affecting me. I know that doctors don’t have the time to sit and read a blog written by each of their patients, but it is here alone that I manage to really paint the picture of what my life is like now. When I talk the words just don’t have the power behind them, I loose all the detail, the descriptive essence of what is happening to me. I guess most patients with the range of illnesses that I have will have the same problem, but there is no real answer. A list is just that, prompts to remind you that you need to talk about the pain point on that rib. Try adding to that list what is needed to pass on the real problem and you land up with another blog. I really wish that my brain could manage that transfer of information to my mouth.
Years ago now I was sent to see a speech therapist, with the plan that she could teach me how to bring back the voice and fluidity I once had. Clearly she didn’t manage, but she did give me a few pointers that I do still try to use when things have gone into huge blind spiral, where I’m trying to claw your way out causes more problems not answers. They are actually really simple, first just stop, don’t claw, stop totally and take a breath, while signally to the person you are talking and they need to stay quiet. Then and only then sort out what you want to say, speak slowly, never rush your words as by slowing down you have more time to hold onto what has to be said and finally don’t be embarrassed to ask, “What was I saying?”. No one will remember to do it all the time, I forget often, but I can promises that it does actually help a little. It doesn’t matter what coping systems, or even courses on living when disabled that I was sent on years ago, I have only taken from each just small points that seemed to make sense. I had actually forgotten and until this second that I was sent on a course, it was one afternoon a week and it covered everything from working to housing for the disabled, it must have been a great course as I don’t actually remember any of what I was taught or even what the final purpose was. It’s so bizarre, until now that is one of the parts of my life, that my mind had erased for some reason. I guess this means that throughout today, little details will pop into my mind as to why I was there and what it was for. Maybe by tomorrow I will be able to tell you as well.