I spent nearly 2 hours lying in bed awake, doing nothing but lying there feeling the contents of my intestine inching it way around my body. I couldn’t believe the pain it was causing and how it just wasn’t giving in and returning to the normal human state of unnoticed. It’s odd how it never once entered my head that part of the problems I have with my guts was down to a heightening of the pain sensations, rather than being in danger of my guts bursting until the consultant suggested it. I know all too well that one of the things that PRMS does is to create pain for no physical reason what so ever, yet I never once allowed for that possibility. It is deeply ingrained in our minds that pain is there for a physical reason, be it damage or disease, that even now I still expect there to be a reason other than mad body syndrome. Even being reminded of that fact and being very aware of it, when it hits you with an intensity that makes you want to cry and waves of sweating and shaking are traveling through you, believing there is no physical reason is almost impossible. There were four distinct points, leading edges where not just the pain as it moved was clear, so was the pulsing of the blood passing around it and that is the factor that makes me not believe. I have never felt that anywhere other than inside me and I am totally sure it is the factor that made me dismiss the obvious.

I lay there for an hour, my focus flitting from one point to the other and doing everything that I could to relax, especially as my diaphragm was so tight that my breathing wasn’t just shallow but painful. It wasn’t just my stomach that was driving me mad, my entire body had pins and needles combined with a burning sensation. It didn’t matter how I tried to not pay attention to it, to distract myself with thoughts or well-practiced systems to put the pain into a background position, but the point came that medication was my only option. I had first woken at just after midnight, with the only sensation I was aware of was the desperate desire to empty my bladder and a headache. Opening my eyes to find that I had been lying there in pain for an hour actually shocked me at first. It was a long way from the first time that I have had that happen, yet even now it surprises me as it feels it should be totally the opposite way round. The fact is that when you are so focused on anything, time passes unrecognized, pain is a totally absorbing thing, just as anything else can be. You mind is so focused on what is happening and keeping yourself from reacting to all the bazaar thoughts, fears and instincts, that time is irrelevant. All you know is what is in that second, the hours no longer matter. Sleep was clearly out of reach without some kind of action and the only one open to me at the time of night and as everything else had failed was a booster pill and a trip to the kitchen for a cigarette.

If I had needed it, which I honestly didn’t, the fact that my entire digestion system is now involved was totally backed up by taking just one pill, it got stuck. Just like my gut, I could feel its position in my throat exactly and it managed to be stuck in four positions before it found it’s desired location. Each time it stopped moving, I went through the array of tricks that I have used for years and each time it moved, I thought that’s it. Ten minutes plus, from mouth to out of my neck, where below I can’t feel where anything is until it reaches my stomach. At first it was just pass the entry of my throat and it was stuck sideways, I could clearly feel each end sticking into me in a way that something so small should never be felt. One and a half centimeters of concrete that I somehow had to make it turn so it provided a smaller smoother profile, which should have then just slipped down with ease. It turned after the second stop, but still my muscles were clearly still holding onto it. Relaxation then swallowing repeated until it finally released, eventually had the desired effect. If it were just tablets that did this and if they did it all the time, well I would return to crushing them all as I used to, clearly not the slow release ones, but the rest. Anything, and I do mean anything can land up sitting in my throat. If it’s while I am eating, well clearly nothing else can go down until I manage to clear it. I often just give up now, as I am totally fed up finding myself with food stuck and anything I try to add to it, well it just makes things worse and normally returns to my mouth in seconds.

The pain of my throat spasms is totally covered by my meds, there is no pain, just areas where nothing can get past. It’s phasic nature has led me to no longer even mention it to the doctors as I have now had my swallow investigated three times. The first showed exactly what happens, each thing I ate as they watched on their screen, got stuck over and over. I was glad when the test was over, it wasn’t the fact that what I was eating was radioactive that bothered me, it was the taste, sweet to the max and totally disgusting. I was an inpatient at the time they investigated, so it was on during a phase it was happening in. The second time was when the pocket appeared and the food was stuck for hours on the right-hand side of my throat. It took a week to get the appointment, but they saw the pocket, but not anything getting stuck anywhere else. Then I started gagging on my food, over a month passed before I was seen, this time they didn’t see anything at all. It is now on my list of waste of time procedures as all they have ever been able to do for me was to teach me to tuck my chin into my chest before swallowing when things were stuck. That position, not the instinct one of putting your head back, is actually the one that opens up the throat by stretching it and it does work a lot of the time. To me, they are expensive tests for nothing. There is nothing that they can do to help, other than giving you this powder to put into your food and drink, it makes it thicker and apparently less likely to choke on it. Sorry, but thick gin and tonic just doesn’t appeal.

It felt like seconds from finally getting rid of that tablet, to when the alarm woke me. When I was supposed to be getting up, all I wanted to do was return to sleep, but it was morning. All that pain of last night has achieved nothing. There isn’t even the slightest sign that I need to go to the loo or that anything is even near that level in my body. My morning meds also got stuck, but not for too long and I am aware of every seconds sleep I missed. Another night over with, another taste of life with PRMS and another list of things that I can do nothing about other than live with them and hope that tonight will be a better one and to be grateful that it wasn’t a lot worse.

Read my blog from 2 years ago today – 29/05/13 – A separation from sparkle

The long awaited cymbal has at last arrived late yesterday, so my day is laid out now to be a busy one. I have the shopping arriving this morning and once I have phoned Jake he will be here, probably for about an hour, although I am thinking now that it might be a better idea to ask him to…….