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….

Paint the full picture

I found myself doing something yesterday that I don’t do a lot, looking in the mirror, no not just long enough to put on my face cream, I mean really looking in the mirror. I have avoided it now for many years, well anyone who is physically limited in what they can do and of course aging, mirror aren’t exactly our best friends, something that after yesterday, I feel even more strongly about. It actually really surprised me when I found myself standing there really looking, I had just got out of the shower and I was stood in the biggest space in the bathroom as it is the easiest to get dried in, when I looked round to my side and there I was. It seems like just a few days ago that I didn’t mind in the slightest standing there naked, I used to be proud of how well I had survived physically into my late 40’s without time taking too much of a toll on me, now in my 50’s and all that good has been totally undone. You don’t realise until it is too late just what any chronic illness does to you other than just the effects of the condition you are diagnosed with or just how fit pushing yourself around in a wheelchair actually keeps you. When I closed the front door for the last time I still had a flat stomach and a good waistline, not to mention firm arms and thighs, now every part of me is covered in a layer of flab, flab that is there despite eating virtually nothing. When you spend more than half your day asleep and the rest just sitting every muscle you had just turns soft and can’t hold anything in place and I do mean anything. In just 8 years, I feel as though I have aged 20, but the worst bit of it isn’t what I saw but what I felt, for the first time in ages I felt really bad about myself, so my ban on “looking” in the mirror is well back in place.

When you have spent your life being physically active, refusing to sit for more than few minutes at a time, disability is a hugely difficult thing to accept. I was the type of person who never shied away from doing anything physical, I never even learned to drive, I had a perfectly good pair of legs that even when I lived in the countryside, took me to the nearest town to do the shopping and back, even with two kids in tow. There are people you can look at and see in your mind clearly what they will look like as they age and I never saw me like this. My future had me remaining slim and fit right into my latter years, there was no reason for me to ever be overweight and flabby as I still loved to walk right up until it was too painful and too dangerous for me to do so. When you become too ill to live the average life, your weight and body shape do somewhat disappear off the edge of your mind, but even in those early days I saw no reason why the “me” of later years would be anything less than the “me” I had always imagined. Weight gain and flab weren’t even mentioned in any of the sites that I visited desperate to get a fuller picture of my new future, none of them spoke of anything other than the standard symptoms and the standard results of them. Your mind doesn’t go along the logical lines of lack of mobility equals weight gain and flab, your mind still holds on to the glossier pictures, the one that show happy slim people talking positively all the time about their lives. I did have slight blip, where my weight did climb a little for about a year, it was at the point where I had given into the walking stick and I had had to admit that life had to slow down and I with it, but within weeks of being in my wheelchair the weight started to fall off. I had freedom, freedom to move faster than even those around me, I went nearly everywhere at full speed. A manual wheelchair is a total body workout, you don’t realise it at first but you use every muscle right down to your feet, as you lean back and forwards, turn tight corners at speed and enjoy being able to travel where you want again. I went overnight from athletic to pathetic, well that might be a little strong, but you get the picture and as the years have passed the pounds slip on and without any exercise of any type now possible, there is nothing left that I can do about it.

I find it kind of ironic as I really was a person who did everything I could, accept giving up smoking to be a fit and slender person, yet here I am like the majority of the western world, anything but either. I get angry when on the TV I hear all those reporters going on about obesity in the UK and how people just need to lose weight and get fit, I always want to shout loudly back at them this isn’t my fault and I’m not just looking for an excuse, there really isn’t a single thing left I can do. I know that when I check my BMI I am not obese, but I am overweight by about 10lbs, which now makes me 22lbs more than I ever weighed before, on my personal scale that makes me huge. Diet now makes not the slightest bit of difference, I have cut back and cut back until I was nearly eating nothing and nothing changed, without exercise I can’t lose this weight. On the good side though, I have held it nearly steady for a while now, plus I am convinced that the problems I have with my bowels isn’t helping me in the slightest. What I see appears worse than it really is, I know that it looks that way as I no longer have the muscle to hold it all in place and that is why I look like a saggy baggy series of balloons, loosely held together. What makes it even worse though, is what it is doing to my health, especially my COPD as breathing is never helped when you are carrying more weight than needed and in time it is going to make everything else worse as well. I don’t know if it would really have made any difference, but I can’t help thinking that if someone had taken me in hand years ago and shown me what could be and is now my future that maybe, just maybe I might have done more than I did when I could, now it’s too late.

All the way through my blog I have listed thing that no one tells you when you become ill, well this is another one of them. I honestly do believe that it is time they gave us all the full picture and armed us with the training on how to stay as fit as we can for as long as we can. If I had done some form of exercise, even the most gentle when my muscles could still take it, I might still have enough none wasted muscle to actually exercising a little now. Humans have this horrid ability to give up when everything is taken away from us, when my mobility in the outside world was taken away from me, I admit freely that I gave up, I sat back with the well what does it matter now attitude. When your body hurts and your energy has gone, you see no point in fighting anything, but I admit that there was a time when I could have lain on my bed and done gentle lifts, muscle tightening and stretches, they might have made a difference, even slightly. The whole idea of even that type of exercise now is out of the question, my body firstly couldn’t do it and secondly would make me pay big style for every muscle used. No matter how intelligent a person is, if we aren’t given the full information about every possibility that lies ahead of us, none of us can do the right things and none of us will ever be able to keep ourselves as well as possible, for as long as possible.

Read my blog from 2 years ago today – 24/03/13 – The end of the day (prt. 2) >

I think I made a mistake starting this as my body last night decided to give a full blast reminder just in case I missed anything. I was a little late yesterday going for my nap and I didn’t get up until 5pm, feeling very much as I did when I went to sleep. Saturday evenings have been really bad for programs on TV so I was happy to be sat here until after 7pm. I usually find I suspect like most people that when I am busy, I really don’t notice things in the same….

It’s time for change

I woke last night once again with intense pain in my back, this time it was so bad that I had to reach for my booster pills, it’s the first time that back pain has made me do such a thing. I know that it is stupid and that they were prescribed for dealing with pain, but I have them linked so tightly to my PRMS and COPD, that to take them for anything else, well it just doesn’t feel right. I think I have taken them twice now due to the pain in my stomach and both times I have gone down with a huge spoonful of guilt. I know that is madness and that pain is pain, but it’s just me and I can’t help it, something to do with the way I was brought up I suppose. I sat in the kitchen for a few minutes and had a cigarette, not just because of the pain as I think I was actually woken by the fact I had thrown the covers off myself and I was freezing. It wasn’t until I tried to move that I discovered the pain, but by putting on two dressing gowns and moving around a little, well I knew it would warm me up quicker. Last night wasn’t the first time this happened, but when I woke I was also quickly aware of flashing lights behind my eyelids and white noise along with a sharp squeal, far worse than the tinnitus I have lived with for years. I didn’t have a headache or anything even similar, just this terrible noise and the lights which I couldn’t just see, but actually felt every flash as it appeared. In the last few months, this has been happening more and more for absolutely no reason that I can think of, the only thing that is always the same is, I am in bed. I honestly can’t think what it is about lying down, but my body seems to be trying harder and harder to make it as unpleasant as possible, the only good thing about the lights and noise is they pass quite quickly once I am up again.

It can really feel as time when you have a list of illnesses like I do that your body is on one long conspiracy trip to get you, I honestly wish I knew what I have done to it, for it to be so determined. Joking aside, I do understand those people who feel that when it comes to their health that they just can’t win. It’s not as though other than smoking, I have ever really mistreated my body, in fact I think I probably worked harder than most at staying fitter and younger than most women my age. I wasn’t bombarded like our current generation about eating well and living well, I just somehow had it all written in my brain, that I had to keep fit and I had to do everything I could to maintain what I had. In some ways, I know it had to do with not being believed that I was ill for so many years, it was kind of thrown back at me as my responsibility to cure myself. For many years I was a vegetarian, really odd in the late 70’s and early 80’s, it didn’t come just from wanting to be healthy, it had a lot to do with the fact that I wasn’t that fussed about the stuff, nor did I feel that great when I ate a lot of it. I taught myself a lot about nutrition and the right things to eat to maintain health, whilst still living what most would call a normal life, not by going all green or hippy as it was seen then, neither exactly the suitable image for a Royal Navy officers wife. Throughout most of my 20’s and all of my 30’s, I took the time to stay out of the sun, so that I didn’t damage my skin and because it made me feel ill. I spent almost my entire spare time exercising and generally keeping myself fit, none of it seemed to stop me from those terrible spells of being in pain and fatigued beyond how I was the rest of the time, no matter how much exercise I had been doing. Finding that your body has all that time been falling to pieces and all your hard work was a total waste of time as you are in reality even iller than you once thought possible, is really hard to get your head around. If anyone was going to live a long healthy life, then surely it should have been me.

I remember reading once about the man who was behind the jogging craze actually died of a heart attack whilst jogging and yes, I did laugh, but my laughter was a mix of bad taste and pure understanding. When it comes to chronic illness, it doesn’t seem to matter how fit you are, how strictly you stick to a regime of good food and fitness, if it is going to be your bad luck to have it, there is nothing you can do. Some chronic illnesses, yes, can be affected by being healthy, but the majority can’t and that is one of the things that I think too many just don’t understand. One of the constant questions that I remember being asked was “what caused it”, nothing, nothing causes any of them that I have, other than the Emphysema part of my COPD, that’s down to my smoking, I know that, but that was a calculated risk that I lost on. As the doctor said, even if I didn’t smoke, my PRMS is as likely to shut my lungs down as my Emphysema is, Any way, I digress, the point is that most people believe and treat you as though all of what is wrong with you, has to be your fault somehow and can be almost as cruel as the conditions, in the way they look at you and speak to you. Almost as bad as them, are the ones who constantly tell you about people they know who have what they believe to be the same condition, but can manage perfectly well. No matter what you say they seem to have no understanding that the two conditions although within the same family, are a million miles apart, as they say “A little learning is a dangerous thing”.

I believe firmly, that these are all the reasons why those of us who are ill, speak freely about their conditions to anyone who will listen, don’t push it down their throats, but help them to understand just what is happening to them. I heard the other day about a couple of people who were forced out of their jobs, due to their health, their conditions wouldn’t have affected their work in any way, it was just the narrow minds of their employer. I have already written about the similar attempt made by one director in the company I worked for, it doesn’t matter what the law says to some people, what matters is what they think they know and I believe it is up to every single one of us with any conditions from Asthma to Cancer, to make the path ahead for those who follow us and for ourselves, just that bit easier.


Please read my blog from 2 years ago today – 09/02/13 – A plan from the day after

I suppose we all do it, go to the Doctor and hear whatever it is they want to tell us, then go home saying well that’s OK. We then proceed to build up a ring of OK around ourselves, luckily I spotted it yesterday afternoon while I was trying to sleep. That in itself told me it wasn’t OK……