I had my shower yesterday, after Adam reminding me in the morning, I don’t think I had had one for a week, but I can’t be sure. It was one of those odd showers, where the water was just the right temperature and I had managed to set the shower head to the exact point where water falls on me without it triggering painful electric shocks firing all over me. I was actually enjoying the whole thing for a change and really didn’t want to get out of it, but I had to, I couldn’t just sit there all day, but it made me wish that I could get out of here and go swimming. I haven been for a swim since I moved to Glasgow, it isn’t so easy to find a pool that you can get to without spending a fortune on taxis. That shower though, it made me start dreaming of lying in warm water, letting it take all of my weight, with my ears below the water and my eyes shut, there is nothing like floating there motionless with the world totally blocked out life. Right now, just as it has been for a few days, there isn’t a bit of me that doesn’t have either pain or isn’t aching, every muscle and sinew telling me that they exist and I can’t shut them up or even turn the volume down. As the warm water flowed over me yesterday, it soothed them, but only when the water was there, it was a bit by bit therapy that I wanted it all over. I have often thought that PRMS is a bit like having a faulty volume dial, as it is as though your body has to tell you constantly about every single bit of you all the time. Sometimes it is just a background chatter, about this bit or that, on others it is a full blown orchestra and choir producing a wall of sound that knocks you over and leaves you lying there begging for them all to shut up. Right now I am not quite at that point but I am not that far off.
I woke this morning when the alarm sounded and for once felt not too bad, the joy of a complete nights sleep proved yet again, but that wasn’t what happened at all. As always I sat on the side of the bed to get dressed and as I pushed myself onto my feet, I could feel liquid dripping from my bowel, I instantly tightened my buttocks and picked up the rest of my clothes and headed to the bathroom. I have had spells of incontinence for several years, it is all part of my personal monster club, but usually there is a precursor, a small warning that things are going wrong, but I could think of nothing, until I reached the toilet, when I discovered that I had been up during the night and a sudden feeling of relief filled me, as clearly Adam hadn’t been to the loo over night. Suddenly I had this memory of my insides falling out in one swift action, I also remembered flushing the toilet and leaving the bathroom not feeling my best, but still no memory of getting up, or going back to sleep, I had had a warning just one that for some reason I had forgotten. Incontinence regardless if it is bladder or bowels, is something that fills most people with horror, no one wants to be suddenly in an embarrassing situation, regardless of how understanding your partner is, this is one thing I think we all want to deal with ourselves. As soon as I was sure that I had everything sorted and that there would be no embarrassing signs or even smells, I rushed back to the bedroom to check that there was nothing that I needed to deal with in there, before I started my day, luckily there was nothing.
There are so many things that MS does to all sufferers regardless of form, that seem to be designed to embarrass us, even spasms if they are bad, can leave you feeling really exposed as if there is someone who is there that don’t know you, some can look really odd. When you are still working full time, it goes without saying that your body is going to let you down occasionally and as things get worse, well the range it has to choose from just keeps growing. I did back then have problems with my bladder, which was bad enough, but I honestly don’t think that I would have coped if my bowels had joined in at that time. For women, issues with our bladders are easy enough to cover up, yes you need a bag full of items for cleaning up, changing into and so on, but there are a good range of discreet towels available, how men deal with there difference in anatomy clearly making accidents more visible, I really don’t know. For me it was manageable, especially after I was in my wheelchair, as nearly always my bladder let me down on standing up, not something I really did much off. PRMS has the joys of not only making you incontinent, but just as so many other symptoms, it is never happy just at one end of the scale. I also have catheters for the days it just won’t empty properly, a pattern that has clearly moved onto my bowels.
I spent nearly all of yesterday half asleep or totally asleep, I don’t know what the trigger was but I have been exhausted for a few days now. It might be as simple as the fact that I have had a couple of nights where I had to get up to go to the loo, but I quite honestly felt really screwed up, not just tired, but as though the plug had been removed from all my energy cells. The whole day I felt as though I was moving through mud that was right up above my head, I haven’t felt right since I had those spasms in my intestine, they were total killers, pain like that always drains me, but this time it was worse than it had ever been before. I was sat on the settee, with spasms switching between my arms and legs, but worst in my arms, all I wanted was to crawl away and hide under a rock and die, I had quite simply had enough of all the pain and energy levels in the pits. Somehow I stayed up to my normal bedtime, but I was so grateful to get there, to just lie down again and let my body do what it wanted while I slept and wasn’t aware of it. Yes, I am back at that point of just wanting to go into hibernation, yet all I kept hearing running round and round in my head is “this isn’t me”, of course that opens the question of who or what is it then. I know that I can’t control my emotions when it comes to tears just flooding, but there normally is something tiny behind them starting, just not an appropriate moment, but I feel tearful and raw, yes possibly down to being so tired, but it just doesn’t feel that way.
There is nothing I would like right now other than to locate that volume control and put it back down to zero, even if it is just for a few minutes, silence sounds wonderful. I know it will end when it is ready to, but I am getting impatient. I have even reached out to my booster pills, in the hope that they can make life just that bit better and it worked to a point, just not the point I was looking for, it isn’t getting rid to that voice shouting “this isn’t me”.
Please read my blog from 2 years ago today – 22/11/12 – A Muddle of Syllables