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……

It’s not hard, just listen

It appears that it is truly possible to forget anything, even the position in your anatomy where you keep your tongue. I know I have had it all my life, but for the last few weeks, I have been repeatedly biting it. If it were in the same spot, well I would say it was swollen from all the biting, but it’s not. I have developed the ability to bite any section of it that happens to be in the way, which it appears to be a lot of the time. Anything from a stinging nip to an agonising full on crunch. It has even got the point where my mouth is now complaining by inventing the flavour of blood. I have checked over and over, but it is totally invented, not the slightest even pinkish huge to show that there might have been one real drop. I have no proof, but the only thing that I have been able to come up with is that it is all part of the odd things that have been happening in my neck and face in the past couple of months. There are so many stupid little things that have been happening, that I am sure it has to be. From the feeling of grit in my throat to losing my voice, numbness and dead area’s on my face, the sensation of dribbling and constant itching around my lips, the list keeps growing. Biting my tongue and even the inside of my mouth on occasion, even when not eating, seems to be just another part of a growing problem in the same general location.

I haven’t noticed in anything that I have read, but to me it is purely a logical conclusion, that if the nerves in one area of your body are affected in what are recognised symptoms, that the same nerve groups can produce other sensations and effects, not directly recognised as MS symptoms. From my own experience, I know an active area, does do unexpected things that there is no other logical explanation for. For example, if my PRMS can cause me to choke on food, throw spasms that make it almost impossible to breath, cause me to lose all feeling over one-quarter of my face, slur my speech due to weakened muscles and nerves, I am sure that it is behind the biting of my tongue. All the others are recognised symptoms, tongue biting isn’t, but the likely hood is, it belongs there as well. The truth is, that if there is a muscle or a nerve involved, where ever it is, that is doing something a normal healthy one shouldn’t, it is probably down to my PRMS. Therefore, if you have PRMS, don’t waste your life searching on Google for why anything odd has been happening for more than a week, you already know the answer. Note the word “odd”, there are a million things other than MS that can make you ill, if it sounds like a symptom of something, then question, if it is just basically “odd”, annoying, irritating and enough to drive you mad, it’s probably your PRMS.

In some ways, that is actually a really good description of any chronic illness. It doesn’t seem to matter what condition it is, there seems to be a universal truth, besides the pain, or the discomfort, they have an uncanny knack to be able to annoy, irritate and drive us mad. Quite often the hardest part of living with any condition isn’t the direct symptoms, but it’s the limitations on our lives and their uncanny ability to just make things difficult. I have often wondered if we haven’t spent too many years looked at chronic illness and disability in the wrong way. Everything seems to be focused on helping us to return to, or to mimic the lives we had before. To come up with aids, that allow us to go on as before, rather than working out new ways to achieve the same end. The perfect example of that to me is the work being done right now on building robotic aids, such as the exoskeleton. Scientist seems to be determined for some reason to put a paraplegic back on their feet, regardless of all the other issues that would bring with it. Undoubtedly their work is not only amazing, but groundbreaking and startlingly impressive in their field, but would it really give freedom and life back to someone who’s legs don’t work. Putting them back on their feet, wouldn’t fix all their other issues that come with their conditions, it feels more like a gimmick, rather than a true aid. I can see huge potential for its use in industry and other fields, but health, really? If those same robotics experts, were to turn those skills, into creating something that actually improves the lives of the disabled, I believe they could change lives very quickly and dramatically. Simply by starting with redesigning the wheelchair, what it does and how it is used. If they started by simply asking every wheelchair user what the issues are, they would quickly come up with a priority list and I am sure they could radically change lives in a short period of time.

Assumptions are one of the most degrading things that people do to each other. The majority of people would without a doubt, look at my life and assume, that the biggest improvement that could be made to my life would be for me, to be able to get outside. Wrong! I haven’t actually made a list from which I could tell you where that would rank, but I do know that it isn’t anywhere near the top. Just as I don’t believe, that the majority of paraplegics don’t really, want to be stuck in an exoskeleton, I don’t really, want to be able to go out. Once you have made it through that initial stage of shock and grieving, for what you have lost, something that happens at every stage, you grow accustomed to your life and trying to backtrack to an earlier stage, quiet often doesn’t improve anything. To an able-bodied person, getting out and about is something you just do. To me, it is a process that starts long before that, as to go out, I would have to get dressed, not just pull on pyjamas. but real clothes. Each and every piece of it, facing me with mobility issues, dexterity limitations and not to mention pain involved all the way along. Then there is the whole process of doing my hair, putting on makeup and making myself feel presentable. I would be less than half way through all of that, and I would just want to go to bed, but I would be faced with having to undo, all of that, first. Starting to get the picture. Yet, it is the one thing that everyone who hears that I have been here now for 8yrs, immediately comes out with the stupid question, “Can’t you move somewhere else?” The insults held in that question, are numerous, and enough to make me want to punch their lights out. I smile and say “Like many, we can’t afford to.” It’s easier than explaining the truth.

From the well-meaning to the should know better, assumption, is without a doubt the biggest and most insulting thing that anyone can do. Yet, from scientist to medic, to the media and right on to our own families, they all do it. There is one huge mind jump from a glib, “I want to walk”, to “I want to be put in this huge ungainly piece of metal and plastic, that is reliant on battery life and impossible to go to the loo in” but somehow, that is what someone heard. Yes, I do know it is in the development stages, but it is unlikely to ever be elegant and invisible under normal clothing. I might fancy going to the pub occasionally, but that doesn’t mean that I if I lived on the ground floor, that I would ever go there. In fact, living on the second floor, takes that thought out of my mind without pain, it just isn’t possible, rather than a tantalising possibility to torture myself with. Nothing, is ever going to be better for people like myself, or even those with far worse disabilities and illnesses than I have, until the day comes that someone actually, asks us, and actually, listens to our answers.

Please read my blog from 2 years ago today – 11/10/2013 – Set to embarrass

Something has triggered a round of twitches and jerks, to date I have been one of the luckier ones when it came to twitches as I have seen many who have them seriously, huge and drastic jerks that take over their entire bodies. For some it is not just the movement that is disturbing, I know that some find…..


It happened again last night, just before 8pm I suddenly started to feel really ill and again I pushed it and sat there until 9pm. Once again I began to start feeling nauseous, not that I believed that I was actually going to throw up, but I wasn’t that far from it. Feeling that dizzy and that not with it is rare, in fact, it hasn’t happened that badly now for several years, my early nights, naps and loss of the stress of going out into the world daily, took it all away. I used to feel like that a lot, actually close to daily, but always worse when I had been to the office. When things started to get really bad, I only went into the office twice a week and worked from home the rest of the time, I nearly always felt really ill and unable to do anything other than work and sleep on the days I went to work. When I became housebound and had to work from home all of the time, there was a dramatic change in the first couple of months, not only did I not find myself fighting to stay awake, I also stopped feeling physically sick and I slowly found that the feeding tube I had lived with for three years, wasn’t needed. I hadn’t been able to eat for a several reasons, but feeling nauseous all the time was a big part of it, no one can eat when you feel like that. Right up to today I have never been able to eat as I once did, food is a constant issue for me, I still get pieces stuck at times, it is as though part of my throat just clamps and holds it there. I can’t cough it up or push it down, it’s stuck until it is ready to let go, I have frequently found a piece of food I thought gone reappearing undamaged back in my mouth. Then, of course, there is the choking, quite a different thing, breathing food or liquid in, isn’t the best thing to do. Those aside, well I haven’t been able to really eat a proper meal since, yes on the odd occasion, but normally either I start to feel ill or I just can’t eat anymore, I’m full and uncomfortably far sooner than most people would be, but last night was worse than any I remember since I became housebound.

If you wondered yesterday why I was trying so hard to find another reason for the way I felt, well there it is. I would far rather that the ‘things’ were behind it than for it to be me heading back in time to that whole circus of not being able to eat. I tried everything I could think of, things I found online, that others suggested and everything that the doctors thought up. None of the so-called cures or helping systems worked, what worked was when my body decided to stop everything and force me to rest. Resting more right now would be really hard as I don’t do much anyway, I know that pulling back on what I was doing a couple of weeks ago made me feel more like myself, but I am still using the system I came up with then that gives me between an hour and an hour and a half of free time each day now, I am still resting if you like, more than I have ever done. So what made me feel that bad last night, I have no idea. I also noticed that I was getting a lot more tiny spasms, the none painful type, when I feel the muscle tightening but not fully clamping down, just flexing if you like. I was aware last night of my stomach tightening in just the same way like it was being gently squeezed, something that isn’t uncommon, but it was constantly doing it yesterday. Not enough to be a wrench, just a very gentle tightening, it has happened before frequently, but I noticed it several times during the day yesterday and I have felt it over the last few day occasionally. When I went to the kitchen to get my med, I was on my perching stool and I leaned forwards to get my drugs out of the drawer and there it was, the start of feeling sick, no reflux or anything, just sudden awareness of feeling sick, really sick, that lasted the rest of the evening.

It may sound odd to many of you who know what I live with now, but the thought of having to go through all of that again, is actually my greatest fear, I fear it more than anything else I can think of. I may not be the greatest lover of food, you could safely leave me in a room filled with the best foods in the world and only a nibble would be gone from here or there, I love testing new flavours, but I do know that my body has to have it and that I can’t live without it. The thought of having to once again have a tube down my nose and my food delivered drip by drip into my stomach, as I couldn’t even cope with the standard flow as I felt sick, is to me like living in a part of hell that I don’t want to see ever again. I know I have had only two bad days, which is nothing but both of them put me right back there, right back at the start, with nothing more I can do, but hope.

On the good side, the ‘things’ are looking a lot better this morning, as though they are actually starting to heal. They were both oozing all day yesterday, but I didn’t find a build up of gunk this morning and they both had a fine scab on the surface, I will keep an eye on them both for the next couple of day, but I think they are past the worst. I can’t believe how exactly to the three week time spot it is from the day I found them, to the point they look healed, I still feel totally lost as to why they suddenly appeared considering I have never had one before, that is still the one thing that doesn’t fit the profile of a canker.


Please read my blog from 2 years ago today – 04/09/12 – Doing the knowledge

There are always loads of things to think about in life and I have been told often that I “think too much”, a phrase I have never really been able to understand. To me, if you don’t question everything then you don’t have a chance of understanding anything. I am inclined to believe that “knowledge is king”, it’s OK I’m not trying to put in as many quotes as I can into one paragraph, they are……..

I surrender

I am sure everyone has been where I am this morning, one of those many many point in life where all that keeps going round in your mind is ‘what did I do to deserve this’. That thought has been there since a little after midnight last night. I had stayed up late as Adam had gone to see his aging Aunt just outside Dundee, with his mother and sister, so I wanted to see him before I went to bed. At around 10 he arrived home and we chatted for about an hour, I had had a really good evening my pain at a comfortable reduced levels, in fact from around 2 o’clock yesterday things slowly improved, I decided to stick to the dose of 70mg of the MST when it came to my time to take my evening dose. I actually for the first time felt reasonably good, when I decided to go to bed, I did feel a little nauseous as I lay down, but it settled and slipped in to sleep.

At 1am I was up, I made it just to the bathroom and threw-up, that was the first of 4 emergency visits, all with the added problems of being a double incontinence. The final return of food amazed me as I was actually bringing back peppers, I ate them over 12hrs before for lunch? On top of that not at any stage last night did I have the normal acid taste and what returned look very much as it was when I ate it? I learned a little as well, my MS has played with my eating process for a long time, food sticking on the way down, and choking are normal, I discovered it all so does the same coming back up. I would say without doubt that the bacon I ate as a treat at 5:15 yesterday evening, along with the eggs and fried onion had something wrong with them, I would put money on the problem being the bacon. If things this week hadn’t been hellish enough I really didn’t need a stomach bug on top. I clearing everything up for the final time at and returning to bed at around 2:45, hoping that I could then sleep and rest the muscles in my legs that screamed at me every time I tried to launch myself on to them and when I allowed my weight to fall on them in haste once I arrived where it was safe to be sick.

This morning I still feel a bit icky, but I have eaten half a slice of dry bread and I have taken my tablets, as you would expect there wasn’t much sign of them dealing with the pain first thing or overnight, but sitting quietly here at my PC I think the worst is over, finger-crossed. My poor guts have been attacked in every fashion possible in the last few weeks, I think they really need a rest, today I am going to eat little and take great care in my selection of food. I haven’t taken my fluid meds as I would say I am a little dehydrated, fluids will be a friend today rather than an enemy. Although I know nausea is one of the possible side effects of MST, I truly believe this is food positioning not my meds. I am no stranger to nausea, through out all my treatment for MS I have had spells of it, most I expect are due to the mix of med, but absolutely none have made me actually throw-up, that’s why I am not jumping on the MST as the cause. I have a plain and simple case of food poisoning.

I suppose that will teach me to eat what isn’t good for me. I knew we had cooking bacon, basically the left over bits not pretty enough to sell at full price, I had spotted that there was amongst it, what I would call ‘Yorkshire Bacon’ really thick fatty slices. Not considered these days as good eating and I would have usually cut off the fat and diced it to use in various dishes, but I slow fried it along with some diced onion, a couple of mushrooms and topped it with 2 fried eggs, a splodge of tomato ketchup and old fashioned heaven on a plate, well almost a nice pigs kidney and some black pudding would have made it even better. The modern faddy eaters just don’t understand what they miss when they look at old fashion meals and turn their noses up at it.

Today is going to be a play it careful and rest day, once I stop feeling that little bit sick I will be happier, I don’t think anyone likes being sick and I am included firmly in the avoid it at all costs.