Things were bad last night, I found myself searching out my booster pills not long after taking my final scheduled meds for the day. As normal, we were just sitting watching TV, but the pain from my diaphragm was off the scale, not just cutting me in half it was putting pressure on my kidneys and they really don’t like that. I know that part of the problem was being caused by the fact that my bladder needed emptied and just hadn’t bothered to tell me, as when I took my meds I had been to the loo and peed for Scotland. I can remember being told over and over not to sit holding on to urine as it backs up and can cause permanent damage to your kidneys, but when your bladder doesn’t give you the signals required and you don’t have any memory of when you were last there, well what can you do. It is another one of those mixed up situations, affected by all the usual culprits that there is no easy answer to, other than to have my spare brain, also known as Adam, to keep notes of my toilet visits and keep me up to date as to when I should next go and at least try. I stupidly went to the loo at the same time as I took my booster pill, so I don’t know for certain which it was that reduced the pain I was going through, although I would put a bet on that it was the booster as it wasn’t immediate, it took about 20 minutes. Before anyone reminds me that I have a cupboard filled with catheter and that I should also be using the three or four times a day, well don’t tell me, I know this, I just don’t ever seem to do it. I used to think that that phrase about “being our own worse enemies” was a little odd, but that was in the days when whatever I did, didn’t matter, I always survived without any real impact on anything. Now I understand it to it’s fullest, in fact, I almost guarantee it was first said by someone who had a health condition that included a memory of a sieve.
My diaphragm has done this in the past, when it’s at it’s tightest it is like living with a piece of razor wire wrapped around me that has an added twist, every time you move it saws and grinds into your internal organs. Like a lot of pains, it isn’t isolated to the exact source area, when the back of my diaphragm which isn’t alway involved, decided that it wants to play, well that is when I have my biggest problems with breathing appear. If it is just at the front, I have found that hunching forwards seems to allow me to breath more easily. When the back is also aggravated, well think about it, hunching forwards pulls everything in your back tight, add in an already tight cutting pain and I am sure you are starting to get the picture, now add in the pressure coming from my permanently aggrieved guts and my kidneys are immediately in line for being crushed, or at least feeling as though they are.
It has only been in the last five years that I have been having spasms within my body cavity, before that they were totally limited to my limbs and my head. It didn’t matter how painful they were, or how tightly the muscle might screw itself, I knew then that there was nothing other than the muscle involved that could possibly be damaged in any way. Yes, they often hurt like hell but they also responded well to the drugs that were prescribed for me and although not gone, they were under control enough for me to continue with my life, then I had my first MS hug. I defy anyone not to worry when they suddenly find themselves for the first time with a vice closing around their lungs and or over their heart. I was lucky, I knew it was possible but I didn’t have the slightest idea how it would feel, well the word “hug” doesn’t describe it in any way what so ever and on a couple of occasions I was sure I was having a heart attack, which clearly as I didn’t die, I wasn’t. I never once thought that they could actually turn into a permanent feature of my life or that they could actually as I was told a couple of years ago, really kill me. I know yesterday that I put forward the question as to do we get told these things and brush them aside as impossible or honestly didn’t know, well in this case I can honestly say that I didn’t know and I honestly don’t think others do either. With their effects getting more and more extreme as time goes on, I am now clearly wondering what other damage they might do to me before they eventually play their final trick of shutting down my lungs forever.
It is now over a week since I was free of a hug, a full week of having not just discomfort but pain, real pain that isn’t broken at all by sleep. It doesn’t matter if I wake in the middle of the night or when the alarm goes off, I wake to almost exactly what was there when I went to sleep. There does seem to be a pattern settling in, as during the day it remains at around the same level but as I become more tired towards the end of the day, the more the pain increases. Last night wasn’t just yet another example of the pain and the knock-on effects, but also of a string of thoughts that I hadn’t voiced before even fully to myself and it started thanks to that pain over my kidneys, what other damage is it doing? I used to get really angry when I read some of the older information that was given out about MS, mainly because it was all about RRMS, but also because it always told one huge lie, MS doesn’t kill. MS most definitely kill, the fact that the condition that actually caused death was pneumonia or even a heart attack, both of which could be caused by MS due to immobility, but it was never the MS that was blamed. The longer I live with my PRMS and the more that I discover what it can and does do, the more angry I get about that one huge lie and the more I realise just how huge it is. It was only last year that a study was run in the USA that proved that our life expectancy is between 6 and 10 years shorter than those without the condition and they were only looking at RRMS, if all the death certificates actually blamed the real culprit, rather than a secondary condition, I am sure MS would be seen as a true killer. As long as MS is treated as just a chronic, progressive, degenerative condition, rather than a killer, the more of us will die from it. Right now my biggest question is this, if I have muscles in my chest that are managing to tear themselves apart, badly enough to make them bleed slowly and cause permanent bruising on the surface of my skin, some of which have been there for over two years, what damage are they doing inside that I can’t see and the doctors aren’t looking for?
Read my blog from 2 years ago today – 10/04/13 – Where to settle > http://bit.ly/10RSk1A
I have found myself a new distraction, a reason not to do. The photo’s of Teressa’s wedding. I just can’t stop looking at them, they really do fill me with so many mixed emotions, having not been there I have a lot of sadness still that I wasn’t there to share her day, but I also feel tremendous pride and love for her. How could any Mum not be proud of having such a beautiful daughter? I had already enough things to distract me without….