There processes, that’s all

One of my many symptoms that come and go seems to be getting worse. For years, I’ve had issues with eating. Like a lot of people with MS, I frequently get food stuck and/or choke on it. At one point, I was almost totally unable to eat, because it didn’t just make me feel sick, but ill. There is a big difference, feeling sick can be fixed by taking a metoclopramide table, every time I ate anything beyond tiny quantities, I felt as though I had a really bad dose of the flu. Eating was literally making me ill. I know that makes no sense, but I was desperate to eat but I couldn’t. My weight dropped to just seven stone and I landed up with a gastric nasal tube in place for nearly three years. The cure was as odd as the whole event, when I became housebound and didn’t have all the stress and exhaustion of getting ready for work, being in the office, coming home and undressing again, when suddenly life was relaxed and at my bodies pace, I slow managed to increase the quantities and eventually even remove the tube altogether. I still can’t eat great quantities, if I do I still feel ill, but little and often, has worked now for years. Finding myself with now an increasing range of food problems was something I didn’t expect, I really thought that I had this one licked.

The first issue I noticed was a couple of months ago when I suddenly found myself with tablets sticking in my throat again. Not just occasionally, but almost every round of meds meant I had a tablet stuck somewhere. Some of them weren’t even going down at all. I think they are gone, but by the time I move from the kitchen to the bathroom, I would suddenly find one back in my mouth. Tablets are without a doubt, both the biggest and the hardest things that I try to swallow, so I suppose it wasn’t a surprise I noticed them first. Most of my meals are either made up of soft foods, ones that are by nature both small pieces and granular, such as granola. I do eat a lot of nuts, but because I’m aware of my problems I’m always careful to chew everything well. So a couple of weeks ago, I was shocked when I found I was having problems with even the finest foods. On several occasions just like anyone else, I have swallowed the food I had in my mouth, and added another spoonful, only to find, that the food I thought I had swallowed, wasn’t gone at all, just sat in my throat going nowhere. What can you do when you have the equivalent of two mouthfuls, trying to fill the space where only one should be? On others, it has been sat over the entrance to my throat, in a way that is hard to remove in any direction. Add that to the growing number of time that my soft palate goes into spasm and I can’t even get a breath, well, eating, is now once again becoming a problem.

There is no point in my telling anyone, I have already been through all the tests, all the hours of sitting with a speech therapist being taught how to deal with it all. I have gone through all the lessons about how to eat, what to eat, to keep my chin tucked in rather than raised as it’s supposed to open everything up again, not the word supposed, it does unless there’s a spasm. I’ve been through it all, so unless it gets to the point when food is a pure danger or impossible, there is nothing to be done and I really don’t need to hear someone saying all of that all over again. By the way, our throats, are yet another thing that is controlled by the ever troublesome vegas nerve.

Last night I went to bed, with my heart filled with trepidation. It actually all started three days before when I went to the loo with no problems, well other than there was a piece of stool, trapped at the exit of my rectum. I know that I said I wasn’t going to write any more about my problem with my guts, but I said that before all this happened and this, it’s all totally new. Over the last few months, having a piece of stool I couldn’t get rid of has become quite normal, something I have learned to live with as no matter how I try, all I do is cause myself pain. Yesterday, though, well I had just had enough of it and I decided to use a suppository. A simple step I’ve used a couple of time now that removed the problem with ease and with the wind I had, I thought it was the best solution. The last couple of times, after I had cleared my bowels I had a short spell of mild incontinence, usually more mucus than anything else and it passed really quickly. I was relieved yesterday when it didn’t happen at all. The only thing that seemed wrong was the rather small amount that the suppository relieved in the first place, plus my normal pain was growing, but everything seemed fine right through the morning and early afternoon.

At 4 pm, as always, I went to fetch my psyllium pancake and a small bowl of nuts, as I was just about to sit back on this chair, I felt it, and I knew it wasn’t just mucus. I had the wateriest diarrhea I have had since I had the endoscope investigations two years ago. I cleaned myself up, but it just kept happening. Fortunately for me, I was fine as long as I sat still, (my normal life position) and didn’t have to move from one chair to another, or to get to the loo. I did what I could to clear what was there, but I wasn’t really clearing anything. By the time Adam came home, I had convinced myself that it was just some kind of extreme reaction to the suppository, so I saw no point in even mentioning it. Something that again, I admit that I do too often. Even when I went to bed, padded so that I hopefully couldn’t have an accident overnight, I said nothing to him.

When I woke in the middle of the night dripping with sweat and once again feeling sick, was the first time I began to wonder if I had made a mistake. As I leaned forward to reach my dressing gown and wheelchair, once more I felt semi-solid liquid escaping me. I freely admit that I then allowed the idea that I had a much bigger problem to enter my head. I examed my own abdomen to see if I could find any area where there was a hard mass, I found nothing. Yes, my abdomen was tender, but that isn’t anything new, it frequently is. I have been examing my stomach for years, so I am sure that if there was anything there, I would have found it. Right or wrong, I made the decision that it was just something else that I was just going to have to get on with.Yes, I woke up during the night feeling sick but a metoclopramide tablet, dealt with it and I managed to return to sleep.

Eight hours on, well, on the good side, I’m still here and nothing has gotten worse, in fact, the diarrhea seems to have dried up. There was a little there this morning, but after a couple of hours of being upright, I’m sure that that is, at least, is over and done with. I know that anyone else out there would have been to their doctors or the local hospital, but being housebound actually puts both of those things out of reach for me as I have explained many times before. I’ve written all of this because it has to be documented so that it’s here, where it belongs, amongst all the other joys of life with chronic illness. It is just another 24 hours of my life, hours I have to remember and I have to be able to tell the consultant when I see him. Whatever is going on inside me, it’s clearly getting worse.

 

Please read my blog from 2 years ago today – 02/04/2014 – The 10 year root 

In the last couple of weeks, I have been having problems with the internet, the download speed has dropped to a ridicules 3.7 and I had simply had enough of it. I hadn’t even been on our providers website for years, so, of course, I had forgotten my password and there was only one choice to reset, once that was done, I logged in with two things in mind, firstly to find out if we still were in contract to them and second who to complain to. Much to my surprise, I had just clicked on the complaints tab, when it took over and ran a speed test, telling me we should have a download speed or 12.5, it was our router that is causing the problems. I hadn’t even really considered the router as a possibility, although I did rebooted it just the other day, just in case and when there was no improvement or change, I put it firmly back in the “Talk Talks” domain……

Something’s, just make you smile

I shouldn’t have done it, but I did. When you start to feel desperate, we all think about things we shouldn’t do, but I knew inside, it was the only answer. Somehow, I had to reset my system, force my body to do what it’s supposed to, rather than running mad, as it has been the last few days. I remembered several months ago now, that I was at my wits end with the pain I was in, so I took the desperate measure of taking a double dose of my Morphine booster. I had gone to sleep scared, as I didn’t know if I had taken a dangerous dose or if I was going to be OK, I slept the whole night and woke with my pain much reduced. I never once thought that it was the Morphine that made the difference, just the fact, that I had had a really good sleep. Last night, I didn’t take a double dose, I took a dose and a half. Snapping the tablet was easy enough, swallowing it, not so easy, as the sharp edge kept catching on my throat, but on my third attempt it went down. All I was looking for, was for my body to slip into a deep sleep, and stay there. If I could bypass the fight to get to sleep, then go into a deep enough sleep, there was just a chance that when I woke, I might find the improvement I have been longing for. I lay there for a while, still feeling all the sensations, the insects crawling over my legs, the fire and numbness of my feet. Just as it has been for the last few days there wasn’t an inch that I could find, where silence was actually known or remembered. Everything that had been there for the entire last 36 hours, without a seconds break. I lay there, waiting, hoping and even slightly praying because I had quite simply had enough.

Adam had questioned me during the day, over why I hadn’t gone to bed in the afternoon. I told him the truth, I didn’t want to sleep, I was going to listen to my body and just do what it wants. What I didn’t tell him, was that total truth of why, I didn’t want to lie down. I didn’t want to be in bed just lying there feeling once again all the things that had kept me awake the day before. I had already hatched my plan, I was going to keep myself awake until 9 pm, then take my extra meds and sleep then. Sitting here, I was still able to blank the bulk of it out, I could use distraction to it’s fullest, not a total success, but enough for me to ignore all but the worst. When I woke just before 7 am this morning, I feared that it hadn’t worked. I was pain once again in my lower back and I was desperate to go to the loo, as for the rest of me, well my bladder and back, were screaming so loud, I felt nothing else at first. 7 am, there was an hour and a half before the alarm was due to sound. I wasn’t really tired, but I knew that I could still sleep and that hour and a half, could just make all the difference. I sat in the Kitchen for a few minutes, just smoking my cigarette and working my way around me, searching to see what I could find. What I found made me smile. There was pain, there is always pain, but there was also silence, beautiful silence. I had stepped back in time, between the what I now consider my resident oddities, there was nothing, normality, skin that was just skin, rather than a mess of messages that just didn’t belong. The first of my goals had been achieved, all I had to do next, was to lie down.

I have to admit, that I was hesitant, part of me said just stay up, accept what you have and have a good day. An hour and a half, though, is a long time when it comes to being relaxed and rested. I had to give it a go. Climbing back into bed, was as hard as it was to get out. I don’t know what has upset my back, but it is determined to produce pain in the morning. I know it’s not the mattress, we only replaced that a few months ago. I had hoped that it was just part of all these heightened sensations and although this morning, it didn’t hurt as badly as the past two days, it still hurt. I had also been playing with the idea, that I have been spending my nights, reacting to what I could feel, even in my sleep and I was somehow twisting my spine, but I couldn’t be sure. Once lain down, I found the perfect spot where the pain almost vanished, then I waited. At first, there was silence, everywhere but my back and my hands and arms. The wheelchair had done it’s normal, but the rest of me was totally silent. I lay there still smiling into the darkness, no rainbows of light, just darkness, and silence. Yes, there was a growing numbness in my legs, but it was just my legs, not my face or anywhere else. I smiled my way back into sleep.

The smile didn’t even vanish when I did get up to find Adam still asleep and not on his way to work. My fears of my new getting up hour had happened, he had slept on and was by the time I got up, late for work. Even that didn’t upset me, it’s funny how something as simple as sleeping deeply and my body shutting up, has made me feel so good. It’s three hours on, over those hours many areas of displaced sensations have returned, I don’t know what will happen when I next lie down, right now, I don’t really care, as I slept and I’m smiling.

Please read my blog from 2 years ago today – 30/12/2013 – So where am I

There was no catching up for me yesterday, I knew before I went to bed for my nap that I was already a couple of hours behind, no matter what I tried the time just kept slipping away. I am already over an hour……