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……

Coordinating life

I didn’t notice it when I first woke up this morning, but suddenly this house is cold today. Why? I don’t have a clue as it has been a full two weeks without the heating and without feeling cold at all. It may have been the speed that I woke with and left the bedroom that meant the temperature didn’t touch me to start with, or just the fact I needed the loo. I was so pleased to wake feeling like I had to move quickly as things were at last moving inside me. I am under no illusion that I am anyway near being clear, but just going at all was enough to make me not to angry at waking half an hour early. My plan yesterday of not eating anything of any great quantity actually was really easy, I just wasn’t hungry. Each of the three pancakes and the small amounts of yoghurt that I ate, all seemed like too much for me. I don’t think that I have been this restricted in the quantity of food that my stomach will take for several years now. Just like all the times in the past, I feel fine, then suddenly, bang, I feel ill, full and unable to even put even another crumb into my mouth. I have tried many many times to just clear what is on my plate, something I was brought up to do and just never quite managed to shack. That last final little bit turns into a spell spent in hell. It makes me feel so guilty for forcing my children to eat everything on their plates, as I can remember seeing on their faces the same expression I know is on mine, one of I’ll die first before this goes anywhere other than the bin. When I have been on my own, I have quite frequently even had to spit it back out of my mouth as I am gagging on it and I can’t make it go down. Mind you I can gag on salvia at times, so I don’t suppose that is a good gauge, but at the time it is a powerful one.

I thought at first that it was just a coincident, but recently I have been finding myself more and more once again having a problem between breathing and swallowing. What with everything else going on I have been dismissing it as an oddity from the past as I haven’t been bothered by it for a long time. As I said a minute ago, I can gag on salvia and it wasn’t a joke, that is the total truth. I even landed up in the hospital once because of it, for about a month in total, I couldn’t get the coordination between speaking, swallowing and breathing right at all. In the last few weeks, I have had short spells of it. I have suddenly found myself unable to breath because all the muscles in my throat are trying and wanting to swallow, often when there is nothing there other than a tiny amount of saliva. Once that swallow mechanism is triggered it is almost impossible to stop it until it is completed. But the same goes for the need to breath, so the two land up fighting each other and I am caught in this knot of not quite panic, but yes, I would call it fear. Looking back, I can see clearly that it reappeared about a month ago. At first it was just the odd occasion but it picked up and can now happen several times a day, but I can’t trigger it. It either happens or it doesn’t and it isn’t linked to any food time, consistency or texture, just the nerves firing all at the wrong time. I didn’t break it down, but I did say the other week that I was getting spasms from my pelvis up to my jaw, well this was included in that statement.

It kept happening yesterday, over and over from when I was eating my pancakes to late in the evening when I was trying to eat some olives. I had about ten in total and I gagged and had myself caught in a spin three times just trying to work my way through them. I can’t prove it, but I would say that it is fair to say that it is all part of this madness of messages that are traveling down my Vagal nerve and producing all the wrong results. It’s odd how quickly you stop panicking about things that fundamentally are things that could kill you. Finding yourself unable to breath sounds as though it should be terrifying, I actually do remember being really scared when we went to the hospital and the doctor took one look at the mess I was in and admitted me there and then. But when you have lived with something for a few days and you haven’t dropped down dead, well it suddenly gets slotted without argument into this is normal section of your brain and once there, they are there forever. I have often wondered how a perfectly average person who has never been in worse health than having a cold, would deal with just one day in my body, how long would it be before they were demanding to switch back. I do often have to remind myself that being in pain and unable to get around, or not being able to breath, isn’t normal. I have come to the conclusion that it is yet another self-preservation thing, our brains have to switch these things into the normal folder as otherwise we would die of fear if nothing else. Just as they say that humans have managed to become the most successful animal who has managed to populate every section of the world because we are so adaptable, it is the same ability combined with our ability to accept, that keeps people like me going day in day out.

No one’s normal is identical to anyone else, it is one of those things that we all think we know about, that normal life, yet every life is different. My normality may appear extreme, but none of us knows just how extreme ours will ever become, not even me. For all I know, this is still the beginning, only time will tell, but the thing I do know is this, no matter what it holds in store for me, eventually, I will see it as normal.

Read my blog from 2 years ago today – 27/05/13 – The magnifier of symptoms

Some days have a feel to them, something you can’t put your finger on but you know is there, like one of those mobile itches. You scratch at it feeling satisfied that that is it, then suddenly and repeatedly it reappears a few inches from where you last scratched. Yesterday was one of those days, I kept waiting to find out what it was, but nothing seemed to happen, each hour passed……

Food for thought

I thought the other day that I was imagining it, especially as I spoke about it just a few weeks ago, but yesterday proved to me that it is real, I am now getting muscles locking in my throat. For years, I have have been getting things stuck in my throat as I explained a couple of weeks ago, but when I suddenly found myself starting to have a painful throat, I just put it down to being more aware having just written a detailed piece about it and then did my best to forget about it. Something that I was finding really rather easy to do throughout the day, but by the evening I was finding that I was very aware of it and ignoring it was impossible. It is like any other spasm, in that suddenly all the muscles go tight and lock up, luckily just for a few seconds so far, but they leave behind the feeling similar to having a sore throat. I had noticed it a few times in the last few months when I was lying in bed, nothing to do with lying down, more a case of it was so mild that if I hadn’t been isolated in my ear plugged, eyemask cocoon, I would never have paid any attention to it at all. Last week I had a couple of days of it, not badly, but they were there and I did on a couple of evenings really wonder if that was it, I had a straight forward sore throat, but it didn’t feel quite right as it was yet another thing that felt muscular, not just like the internal lining to my throat. I can’t think of a single day recently where I haven’t managed to get something caught in my throat, but yesterday I was eating noodles and one of them managed to get caught. I could feel that my throat was tight and this stupid noodle was still sort of in my mouth whilst also in my throat, but I couldn’t get it clear of my throat at all, then suddenly it released and normal service was restored. It was once I finished my lunch that I started to think about it and I realised then that I have actually not had a single day recently where I haven’t had at least one spell each day with my throat causing me discomfort. I can’t actually say that it is painful, as it’s not, it’s just annoying. I have a vague memory of saying a while back that I thought I had started to have spasms in the front of my neck, well I am now saying that to go with the ones I get in the sides and back, they are in the front as well and inside. That is the one good thing about our necks, they are made up from a network of small muscles rather than large slabs of them, one going into a spasm by itself isn’t usually dangerous at all, just really annoying.

I am sure that if I hadn’t been having issues for years and this had been the first time that food and I were in disagreement, I might have panicked, which without a doubt would have made things worse. I know that the first symptoms with MS can be anything from headaches to total loss of limbs, but I am so glad that for me it has been this slow rise of different things all over the place. I can’t imagine how it would feel to wake up one day and suddenly have one of the major symptoms without the slightest idea of what is behind it. Even when you know what is happening it is bad enough, but the feeling that your throat is closed and won’t open would put most people into a spin, luckily the noodle wasn’t even stuck long enough for me to start being scared, plus I knew what was behind it and I also knew that panic makes everything worse. I guess that I am just going to have to start being more careful how I eat and remember to try and swallow in one chewed up lump, rather than small bits. I was told years ago that in my case it was better to swallow amounts that were big enough to bypass rather than get caught in the pouch in my throat, it is something I do try to do, but like everything else, I forget from time to time. This morning was the first day that I have actually woken up with an ache that runs from the front of my jaw in a two-inch wide band right down the front of my neck and includes the base of my tongue. I have either being having spasms while I slept or more likely my efforts to clear that one noodle, actually means I have slightly pulled all the muscles in that area. Either way, one more area of my body has now succumbed to the onslaught of PRMS.

I didn’t mention this yesterday as well yesterday subject felt far more important to tackle than another post about shopping, even if it is one that is going to affect a huge number of people, able-bodied or disabled. When I had that run in with the rudest delivery driver from hell a month ago, I had checked their terms and conditions and found that I was totally right and what he had said about not being allowed to come upstairs or enter my home was total rubbish. So I was shocked on Monday when I had yet a second, but a very nice driver, stood at my door saying exactly the same thing. He was perfectly politely and he said that the terms and conditions had changed two weeks ago and although he eventually did assist me it was so stupid they way he did it that I was left laughing. He made sure that he didn’t entirely enter the house by keeping one foot outside and stepping forward on the other so he could empty the shopping onto the floor for me. When he left and I had put the frozen items away, I headed back to my PC and checked not just Asda’s but other shops as well, what I found shocked me. Both Asda’s and Sainsbury’s no longer deliver to the flat where the order is expected but just to the “communal entrance”. On reading Asda’s, it is a little ambiguous as to whether or not they can enter the building or not, it too appears to be connected to your kitchens location vertically within the building, so far Tesco has no restrictions. I had more or less decided that I had no option other than to change to Tesco, but I thought it was worth once again phoning the store and I was once again assured that the driver should have delivered my shopping as requested to the floor in my hallway and that if the customer requested help it should have been given. For now I am going to remain with them, but I have said and I mean it, one more driver refusing to simply empty the contents onto the floor and I am off. I do think though that it is wrong that a company can change its terms and conditions like this without telling the customers. If the driver had refused to bring it upstair, which according to the terms, he has the right to do even if it is just on his own whim, I would have had to refuse the entire shop. I can’t help wondering how many angry customers there will be around the country having to fetch their shopping from however numbers of floors below, it could even mean mothers having to leave their children in their flat alone, whilst they bring the shopping up from below. Once again, companies putting in new rules that suit them as it saves time but removing the entire element of service, they, of course, will put it down to insurance costs, but if I let the driver through the entrance system, he is then invited in by me and covered by my public liability insurance, something every home owner has to have, so insurance isn’t a valid reason. As for those of us who really need help, well it appears that we will have to be prepared to declare our illness to every company, just to get that little bit more help from what used to be an anonymous service for all.

A month ago the driver who was so rude and aggressive clearly had a problem with the fact that I was telling him I was disabled as he couldn’t see it, but out of pure interest I decided to test the second driver as to his attitude. I know without a doubt that he didn’t have the slightest idea why I was asking but I simply asked, “If it were an 80-year-old you were delivering to, would you give them the help they asked for”, his answer was telling as he said “I would”. Clearly I was yet again dealing with perception, he couldn’t see anything other than I didn’t walk perfectly, so he couldn’t see why I couldn’t manage to do myself, what I was asking him to do. I really do curse the invisibility of my health, it makes life so much harder for so many of us, I have to admit to wondering about putting my wheelchair in the hallway when I am expecting a delivery in the hope that seeing it might make them think twice, but that to me is a low trick and not something I personally want to do. I know it is human nature to judge others on what we see in the first few seconds of meeting that person, but in the entire 30 years of being ill, I have only ever had one person look at me and actually ask me if I have MS and that was a doctor I met 2 years ago. He was in his 50’s and had spent the majority of his working life in Aberdeen working with people with MS, so he had a good chance of getting it right, but the average person in the street, well they don’t stand the slightest chance of seeing anything. I don’t know what the answer is, short of us all wearing some kind of badge that says we are ill, which I for one wouldn’t want to, I honestly don’t know how this will ever change.

Read my blog from 2 years ago today – 13/05/13 – A why, a what, but not the answer

Yesterday I asked anyone if they could help with a possible theory I had about nerve pain I was having in my head, the pain is always very precise, extremely painful and short-lived, appearing in pulses for a short period of time then vanishing. In the past, I had done the dreaded on in search for possible reasons and I had come across……

From throat onwards

I had a lot of kind people yesterday on twitter suggesting diets and different things I could take to help with my intestinal problems. I think over the years I have tried as many different things as I can think of or have found to see if they might help, but the issue isn’t what I eat, but the fact that my the nerves from my throat down have huge issues and are just not doing what they should, pushing the food through me. That is why I am waiting to see the consultant again, as neither diet or medication are making the slightest difference. Just like the rest of me, the nerves aren’t passing on the messages they are supposed to and the result, well is nothing happens as it should.

By the time I had to take my night time meds, I knew there was no choice as to whether or not I needed to take the higher dose of laxatives, I had to. The day passed without anything happening, no pain, no accidents, just incredible discomfort and no inclination to go to the loo at all. I had spent the entire day shifting around in my chair and at times being forced to try and wonder around to ease it, as my stomach felt as though it was a pumped up balloon. Honestly, it reminded me of first stage labour when there really isn’t anything happening other than you feel as though you want to scream and climb on, lie on or sit on anything in sight all at the same time. After I had my nap, it seemed to settle a bit but I was still fidgeting enough for Adam to ask if I was OK as it was clear I wasn’t. Despite, the fact I really wanted a good nights sleep and the fear I have built up towards taking it, I knew I had to. It is surprisingly hard to actually swallow something that experience tells you is going to cause more pain, the first three times I used it, I spent most of the night sat in the kitchen exactly in the state I was in all yesterday, but with the addition of incredible pain. I know that the dose I took the night before hadn’t caused pain at all, but sitting on my perching stool measuring out and then having to swallow the horrid stuff, was hard. I even sat there for a few seconds just looking at it, before closing my eyes and throwing it into the back of my throat in an attempt to bypass my taste buds, as it’s horrid. 12 hours on and nothing has changed, I didn’t even have the wind of the night before. I am not complaining, but I really don’t understand why I am getting no pain in my stomach for the last 24 hours, it really isn’t normal at all and to be honest, I would be delighted right now if I had just one cramp or spasm, something that felt normal. At it’s very worst yesterday, I would say that it ached, nothing beyond that and I honestly even when lying down, haven’t felt anything moving, not a single thing even wind, which doesn’t mean I haven’t had any, I just haven’t felt it.

You would think that after swallowing differing numbers of tablets, from a couple to a handful, that drugs would be something I am used to, but I still don’t like them. I have gone through so many phases of them getting stuck in my throat, at one point it was so bad that I had to crush everything and coat it in different things from maple syrup to yoghurt just to get them into my system. When they started giving me slow release medications, well I had no option other than to swallow. I have lost count of the number of times that I have had to dislodge them and bring the back into my mouth to swallow them again. It is part of the reason that I have whatever drugs possible in liquid form, they may not taste nice, but they don’t get stuck. Oddly, I seem to often have more problems with the little tablets than the big ones, just like everything else with this mad condition, it isn’t logical, but it’s just the way it is. In my case, it is on the left side of my throat, I used to think that I was imagining things and that it was impossible to constantly get things caught in the exact same spot and when I had mentioned it to doctors they had sort of dismissed it. One of the nurses I saw when I was in hospital once explained it to me, apparently if the coordination of the muscles used to swallow is out of sink, it can form a small pocket-like space in which things can get caught. Once something is caught there, the muscles can’t move properly so dislodging it is really hard, that bit I already knew. If you use a stethoscope and listen while someone is drinking, you can actually hear the difference, as the liquid is caught and released. Food and tablets can get caught there for hours, I have honestly brought things back into my mouth that I ate ages before, despite having eaten and drunk other things afterwards. It can be very uncomfortable and even coughing won’t dislodge it, it seems to release when it is ready and not before. So far, it is like everything else, phasic, as it is caused by my nerves not working rather than a muscle weakness, but like every other muscle in my body, it is getting weaker and the amounts getting caught are growing. In time it could actually get so bad that it can make it hard to eat anything, not to mention the growing embarrassment factor as you spend more and more time twisting your neck and trying to either swallow or regurgitate whatever is there.

Last night I actually slept quite well, waking just once when Adam came to bed and did his usual act of practising his trampoline moves before finally choosing a position in which to then deal with his night time flees and eventually settled before going to sleep, when I also returned to my slumbers. I don’t know what time he came to bed, but it didn’t feel like it was that much before the alarm actually sounded. I don’t really don’t know how he does it night after night, but he falls asleep while lying on the settee watching TV then eventually wakes and comes to bed for the last couple of hours or so before he has to get up for work. I have never been able to sleep with any noise what so ever and I so wish I had tried earplugs before, as since I bought them, I have slept wonderfully. Mind you, even before them, I have never had the slightest problem going to sleep, it has always been a case of head on the pillow and off in seconds as long as it was quiet. The vivid dreams and pain have been the only sleep issues I have ever had and they always wake me in the middle of the night. I have now had three nights without vivid dreams, I did take a booster yesterday around lunchtime and just as I expected, taking one is not a problem. It really looks as though I am just going to have to be careful how many I take and at what time, definitely not just as I am going to bed unless there is no other choice.

Read my blog from 2 years ago today – 30/04/13 – One of those days

Tuesday morning and another day of shopping to deal with. I have to say this is one of the tasks that turns up fortnightly and although I am usually really happy to do it, today I just wish it wasn’t happening, but it’s feels like just one of those days. I don’t feel bad or anything, I just can’t be bothered, why, because I am human! I don’t know any more than you would were feelings like this come from, but they really are a pain………

Keeping it small

I just had far too much for my breakfast, I fell for an offer on hot cross buns and landed up buying two packs rather than one, nothing unusual there for any shopper, but I never throw food out until there is no other choice. There were six buns that had to be eaten today, I know that Adam will without a fight happily eat three for his breakfast, so I ate the other three, one bun to many. Now I feel as though I have just eaten a huge overly rich three-course meal and my insides are telling me so, why is it I can one day eat two, but try three and I want to throw-up? There is such a fine line between comfort and wanting to explode and not just when I try to eat hot cross buns. When you do nothing, well you don’t need that much to eat and if you eat too much, well the weight piles on as I already know, slowly I have been eating less and less, my appetite has diminished along with my mobility, but the scales still tell me I am eating too much. I try to not eat too much at any one time, I have become more of a grazer than a feaster, so I am not surprised that now feel over full.

Food to me isn’t something I am over bothered by, I know that sounds an odd thing for anyone to say, but I have been the same right through my adult life, unless I am really tempted by what is on offer, I just don’t want to eat. I will and always have been happy to live on the exact same diet day in day out for months without even thinking about it. Adam doesn’t like it one bit and has always done his best to try and get me to eat the foods he likes, but there appears to be a golden rule, if he likes it, I wouldn’t touch it. Food has to be either lushes or decadent for my interest to be sparked, I am not the type of person who is tempted by normal everyday foods, my idea of a nightmare meal would be something like steak or beef burger and chips, or even a curry, in fact, anything else that I would call average British fare. Add on all the issues that food causes me, the choking and then the digestive problems, well, food is just easier to be kept simple and little. For me to be tempted to eat every meal on every day, I would have to be moved into a five-star hotel with a Michelin chef cooking every meal for me, but even then I would be asking for small portions. The odd thing is that I know without even trying it that I would very quickly get fed up of even the best foods and would start requesting my mono meals of choice. It appears that like everything else that lives alongside chronic illness, appetite becomes something that is under a microscope and our likes and dislikes are all amplified. For some reason when your entire body is working against you, it can also feel as though the outside world is doing exactly the same thing, what is meant by Adam as a caring gesture, like the bars of chocolate he kept buying me, somehow turn into some kind of challenge, I feel as though I am being forced into eating them to keep him happy. I eventually had to ask him to buy no more of it as I didn’t like it that much or want it, I thought the fact it took me weeks to eat one bar might be enough for him to get the message, but the truth never reached him and had to be spelled out.

When I found that porridge was suddenly making me feel sick when I ate it, I had to find something else, so I tried to eat yoghurt every morning, a month and a half on and it too is making me feel sick. It has become something I was having to force myself into eating, hence the not so hot idea of the hot cross buns. When breakfast started to be a meal with too many problems, I thought that maybe it might be better to have something around 4pm instead. I started having soup, which apart from one particular type, has been fine so far, but I don’t hold out much hope in continuing it as I am now starting to feel sick in the early evening, so badly the other night that I had to ask Adam to fetch me an anti-nausea tablet as I didn’t dare move just in case. Other than lunch, everything that I eat these days seems to land up making me feel sick, I can only guess that it has something to do with what is going on in my guts, but it does also make me just a bit angry. This is now the third time that directly or indirectly, my PRMS has turned food into an issue, I have either through luck, changes in my PRMS or changes in my lifestyle, managed the other two and been able to return to not a normal pattern of eating, but at least one that has allowed me to be able to eat enough to live. Three times I have found myself in the position where I can’t eat and every single one of them has one thing in common, food makes me feel sick. To date, the doctors have been of absolutely no use other than to put a gastric nasal tube down my throat for three years. I eventually got rid of it once I was housebound, not having the stress of getting ready to go out, leaving the house and being in the office, meant that I started to find food that bit easier, but I have never since then been able to eat normally, it has had to remain small amounts when my body can take it. Now I once again find myself facing an appetite that just doesn’t want food and stomach that makes me feel nauseous when I do force it to take something.

In all it has to be about 10 years since I was actually able to eat a normal diet, 10 years of picking at this or that, trying to find some way through the mess that is my body. I know it has to be fed but what no one has been able to tell me is how to do so without it either wanting to come back up or getting stuck inside me. After 10 years you would think that I am used to it, well in many ways I am, but I am also incredibly fed up with it all as well. From the outside, it might appear that it is phasic, it’s not, it’s just it has been going on so long that I don’t really talk about it, but I do admit that like everything else from body pain to diaphragm spasms, the mess with my guts seems to be making it worse and I am spending more and more time feeling sick, regardless of portion control. I know that nausea is part of MS, but the link to the amount eaten isn’t something that I can find anywhere.

Read my blog from 2 years ago today – 28/03/13 – Navigating help >

Today is the big day, Teressa will be married this afternoon! Despite all the changes in date and the whole trauma of actually getting John here, we have made it to the long awaited wedding. There are still several hours to get through before I log on to the live stream so it is a case of keeping busy….