Well I made it through the night without being woken by the pain in nose as I did last night, but it is still painful. I didn’t realise until later in the day that it wasn’t just painful, but there was a bright red mark on my nose where the binding of my sleep mask had been lying. So last night I put my mask on just that bit lower so that the binding was touching just the cartilage, it was perfectly comfortable and I went to sleep with no issues. Even first thing this morning I thought all was well, then I headed into the bathroom and the red area is now an inch in length reaching right to the tip of my nose and all of it is painful to touch. I have just taken a pair of scissors and I have cut several slits into the binding so there is no way any real pressure can possibly be put on it later today, not that I could find a reason for it causing pressure in the first place. Why is it that the solutions to problems these days, seem to cause more problems rather than just a straight forward fix, I suppose this point has actually been growing for a long time, but dealing with my PRMS madness just keeps getting harder, taking more and more time searching for answers and costing more and more on failed attempts. It really doesn’t seem that long ago that a small problem would appear and within 24 hours I had the answer and life went on with one more thing that had changed life, but by being solved, not as unfixed and requiring more work.
If I needed proof that I have suddenly jumped into a sensitive phase other than my nose, well it arrived yesterday as well, out of nowhere I am now finding just sitting painful. The pain in my backside started to build ever so slowly over the last week, then bang yesterday evening found me not knowing which side to lean to, or how other than standing up, to relieve the pain. It has to be about 5 months since I last sat on my blow up cushion, but I am sat on it again as I have no choice. Even the bed, despite having just washed everything and all the layers being fluffed up to the max, has started causing pain in my feet, both in my heels and my toes. I have so enjoyed the last few months of not having to think about it for a second and just able to walk, sit or lie down without thinking is my skin going to start screaming at me. To be fare it’s not really the skin, it goes deeper than that, but it has nothing to do with muscles, bone, or anything else other than about a centimetre depth from the surface of my skin inwards and the slightest thing can trigger it in any area of my body. It is times like these that you start to wish that levitation was actually possible.
It doesn’t seem to matter what symptom it is, outside of a few core permanent ones, everything else seems to move around in cycles, not as tightly that you can list them and say this is what will start happening next week or will be the next to reappear, but they clearly seem to take turns at being active. The silly thing is, is you don’t really notice any of them going away, they just slowly start to fade and are gone and your attention has been engulfed by something else that means you don’t even really notice their absence until they reappear. Each time I do notice something like the fact I haven’t sat on my blow up cushion for a while, I actually always go through this hope that that means it will never be needed again, life has shown me that isn’t true, but I never give up hoping. In fact it has shown me not only it will return, the likely hood is that I will be searching for a better solution than the one I had before, as it just isn’t good enough to deal with the next bout, as I said no solution is permanent.
I know that progression never ends and that any symptom I have ever had can return at any second and cause me more and more problems. I also know that there could well be a time ahead of me where symptoms stop disappearing into the background and will stay with me for ever, until I have all of them all the time. Somehow I still find hope and the feeling that I can and will deal with it, when ever, or what ever it does. No I’m not immortal, I didn’t mean that, but I am a coper and it has so far been something I have done quite well, so I can see no reason, so far, why that should end. I guess I work on a belief that if I could survive yesterday, then I can survive today and that is all that really matters.
Please read my blog from 2 years ago today – 29/12/12 – Reaching into the dark
About midday yesterday I started to cry, I cried at everything and my emotions are still a little raw. I’m not sure where it came from and why it started, but at every slightly touching moment……
SORRY YOU ARE FEELING WORSE,BUT YOU HAVE A POWERFUL PERSON TO HELP YOU THROUGH IT AL( YOU ).YOU ARE THE STRONGEST PERSON,I KNOW. YOU CAN DO IT…YOU WILL DO IT.FOR YOU CRYING IS A SIGN THAT YOU CARE. YOU OF ALL THE SICK, HAVE A HUGE REASON, TO SOMETIMES CRY.LET IT OUT.YOU ARE TO HARD ON YOURSELF. NOW THAT THE X-MAS” MERRY”, IS OVER,I WISH YOU AT LEAST SOME GOOD DAYS FOR THE NEW YEAR…LOTS OF LOVE….NEVI ‘