The ticking of time

There are so many points in life when you just tell yourself, things will never be the same again. Of course, they are not all bad, in fact, some of them are wonderful, like the day you hear the words you thought you never would “Here you go Mum, meet your daughter”. Clearly as well, they aren’t all as major as that either, even tiny things can make you realise that you have once again, passed one of those tiny milestones, that are scattered through our lives. Some make us laugh, some cry, some are just noted with a sigh and some, well they’re just marked with the nod of our heads and the acceptance that it’s just a point in that process of ageing or another part of the story of our health. Which actually category this fits into, I’m not totally sure, is it just age, or is it more part of my body falling apart due to my health. Muscle weakness is very much part of my health, but the longer you are inactive, well the weaker those muscles get. For a long time now I have been more than aware that my stomach isn’t as flat as it once was, yes that was said tongue in cheek, it’s so far from flat that anyone can see it. A large part of it is clearly the weight I have gained since my mobility left, another, is the total lack of toned muscle to hold everything just where it should be. I hadn’t though, realised just how bad it had become, until last night.

Over the last couple of years as you know, my PRMS has gone to town on my intestine, causing me all kind of problems, most now under enough control that I am more than coping with them. Last night, I was suddenly in pain in my lower right side. Pain is nothing new, but in that exact spot and as intense as it was, was most definitely new. It didn’t matter how I shifted around, change position or anything else, it didn’t change. I had been on my feet a couple of time, during my transition from wheelchair to chair and back again, but even that movement did change it. I knew my bladder was empty, although that didn’t stop my trying again, just to be sure, as I know from experience that an over full bladder can cause pain of all sorts, and not just where you’d expect. When I got into bed I was hopeful, that just lying down would be enough to relieve it but it wasn’t. I had already swallowed a booster pill because of it, as it was honestly that painful. There was little left to do, other than the totally normal thing we all do to pain, poke at it. I have never been that sure why we do such an obviously stupid thing, what on earth do we expect will happen, other than more pain? Anyway, after I settled back down, I took a more considered course of action, of gently applying pressure and pushing upwards on the painful mass. As I was slowing pushing towards my head, it started to slip away from me and settle backwards towards my spine, the pain was gone. A little confused, I started gently feeling around and I worked it all out. Somehow, a piece of my insides had hung itself, on my pelvic bone, the sinking back motion, was it settling into where it should have been all along. It was one of those silent moments, another tick on the list of things my body now needs help with, keeping my insides where they are supposed to be.

I guess it was always just a matter of time, as I have been pushing and pummelling the rest of it for years now. This was something new, but at least I now know if I am in pain like that again, lie down and gently press. The list of things that I have to do to just keep pain at bay seems to do nothing but grow. Lately, I have noticed that I am now actually feeling pain from my mini-spasms. I am used to having loads of tiny spasms a day, normally nothing more than an annoying tightening of a muscle anywhere on my body. The major ones don’t happen daily, but these mini ones, they are often just seconds apart and if I am honest, are now just part of the background of my life. A few months ago, I started to feel the odd one was producing an ache to go with it, others were showing themselves with a tiny burst of heat or a sudden stabbing pain. They still didn’t bother me beyond being annoying, but they too are starting to show themselves more and more. I don’t think that there is an hour now that passes without my having to sit and gently massage or apply pressure somewhere. I doesn’t bother me on the pain side, but it is one of those things that’s eating into my time.

I don’t think, that there is anything that my body can do to me, that upsets me more than if it finds a way of eating time. If I get a sudden bad spasm, well it’s over and done within minutes and my day goes on. You could say the same about the tiny ones, but it is the accumulative impact that is annoying me. Time to me is so precious these days. I have had to get used to the fact that I need to sleep so much, but it leaves me with limited time. It doesn’t matter what my PRMS has done to me, I have dealt with it with a smile on my face. Yes, occasionally, there has been the odd curse, but overall, I’ve just got on with it. To be honest, that is why my memory frustrates me so much. I waste so much time, having to repeat journeys, back and forwards to the kitchen three times when it should have been done in one. It is more than annoying, it’s enough to get me angry. I have always hated not having the time I want in any day. That is how I landed up years ago, just sleeping just 5 hours a night. I saw it as such a waste of time to sleep for even a minute, more than I actually needed. You can well imagine how I feel about the days when it’s 13hrs plus. Even my straight twelve and a half seems so ridiculous, but there is nothing I can do about it. I have never understood people who say they get bored, or they have nothing to do. How can anyone have nothing to do? I am convinced that as they are putting me in my coffin, that I will suddenly sit up and say “Just a minute, I have this or that to do first”.

Every day is too short, which is why, I am fighting so hard against something I think would actually do me good, getting more sleep. I can’t help wondering if the reason that I am finding so many things a struggle just now, is quite simply because I am tired. As I said yesterday, I could with ease just fall into bed and stay there. It is tiredness, not fatigue, I know the difference. If it were anything else, I wouldn’t actually sleep every single time I lie down, within seconds. If I wasn’t tired, I would just lie there. Like everyone else on this planet, that does happen occasionally, but they are so far apart that they aren’t worth mentioning. I have to restrict my sleep by setting alarms as if I didn’t, who knows how long I would actually stay there. It is one of those balancing acts, one that is so finely set and has worked for me now for about 5 years. I accept sleeping as I have just enough hours awake to be able to have a life. If I change that balance, then something else will have to go, but there is nothing, that I am willing to let slip from my fingers. Somehow, sleeping even for half an hour longer, would feel like a defeat. Like someone had ripped part of my life away and I would be left stranded and bleeding. I hate this illness. My current plan of action, well it’s to push on, to do what I always do and just hope that it sorts itself out, but I know that I can’t do that forever.


Please read my blog from 2 years ago today – 06/12/2013 – A scratch too far 

My bank has sent me this silly little thing they call a token, it’s about the same size as a credit card and looks like a calculator, but there are no plus or minus symbols. I haven’t been to their site yet….

Through our eyes

I have always thought that it is a good thing that we all have our own personal image, not just in our heads, but even in our mirrors. If I had trusted and believed my mirror, I would have been heading to the surgeons asking for chunks to be cut off, for no other reason than they looked wrong that particular day. I believe that we all have a very mild form of body dysmorphia, which for us, is a good thing. The proof is simple, we can look in a mirror and think we look wonderful, then see a photo even just days later, and see ourselves as everyone else saw us, the two images, just don’t match. Which is just one of the reasons, that I hate having my picture taken. Yes, I know I have some great pictures of me, but those few somehow captured what was in my mind, rather than what was in the mirror. Mirrors, normally, live in a space where they are bathed in bright sharp light, great photo’s, are blessed by great lighting. How we see ourselves, be it in our favourite mirror, in our heads, or in those pictures, always matters. It doesn’t matter if you are a teenager or an old fogy, we always know what we want to see, and for the majority of us, we always want to improve it.

I thought by now, that my arms would be getting just that little bit stronger and that I would be seeing the results in my upper body. It is now well over 2 months that I’ve using my wheelchair, even though I knew my arms had become severally weakened over the years, I thought, there would have been some improvement. There is a tiny one, but so tiny, it’s hardly worth admitting to. I’ve never done any research as to the effect of exercise on muscles that are being attacked by both PRMS and Fibro, I just based my expectations, on my own history. It’s about 8 years ago, that I for the first time used my wheelchair, back then, there was a marked change within the first month. Not so much in their strength, as I had always had good upper body strength, but they regained their tone. After years of carrying incredibly heavy record cases, plus having been keen on exercise of all sorts, I just stopped. A change in lifestyle, thanks to my work, meant all of it stopped. I gained half a stone in weight, and my body tone rapidly felt as though it went south. I had tried to do what I could, but I was by then sat on my backside on a phone for 8 hrs a day and walking the mile and a half there and back, just wasn’t enough. Then when my health went into rapid decline, the exercise levels fell off the planet, as my legs were badly affected very quickly. It had been 6 years since I had last been happy with my body, so seeing at least my upper body tone reappearing, was a joy. Not too surprisingly, when I sat in my chair again 2 months ago, I expected at least a small improvement. I know I am at the age where bingo wings begin, but I just hoped they might retract a little, but nothing.

So, OK, my house isn’t the size of a call center, but all of that taken as fact, how is it, that in a smaller space, I have managed to do what never happened at any time, ever, before, I have destroyed my hands. It appears as though life still finds ways to laugh at me, even when I’m locked away from it. No muscle improvement, no new strength, just hands who’s knuckles find it hysterically funny, to jump our of their sockets and cause indescribable pain, just because they now can. If that wasn’t enough, the tendons in my forearms have also found their voice. I had such high hopes when I asked Adam to bring my chair out of the cupboard and to give it a clean. I thought that I had found the answer to legs that collapsed and bingo wings in one. Well not just the wings, using a chair, tones right down to your stomach, they really are the perfect upper body workout that has ever been created. Yet here I am, with not the slightest sign of anything good happening at all. Since I became housebound, I have found it totally impossible to lose weight. I do so little, that it is just physically impossible to shift even a pound. Thanks to the pain that is throughout my body, conventional exercises are out of the window too. Even the physio’s won’t prescribe any form of exercise for me, as the balance between use and pain, is so fragile. I had my fingers crossed that removing the strain from my legs, would mean energy wise, I could shift to my arms, but with an extra positive twist. That twist is totally missing and it’s is so annoying.

For my entire diagnosed history, the effect that my health has taken on my looks, as been a roller coaster. The first few years, the weight piled on. Then I lost the ability to eat for nearly four years. I lost so much weight, that I landed up with a gastric tube as I weighed just 7 stone and I was on the verge of malnutrition. My clothes sizes had gone from my normal of a size 10-12, up to a size 16 and crashed to between a size 6 and an 8. I am talking UK sizes here, a size 6 is nothing, the literal skin and bones, with the emphasis on bones. Since I became housebound, up my weight went past my norm and on, it’s held at 18, which to me is huge, ever since. I hate what I see in the mirror as much as I hated the size 6. This is why I say, I think we all have a touch of body dysmorphia, as I usually didn’t see the 6 any more than I always see the 18, I’m still a 10. I know without a doubt if my health hadn’t stolen my body, that size 10-12 is just where I would be. I also know it would be toned as that is just me, I never let me body win, it did as I said or else. I know I am not alone when I say, that in some ways, the cruellest thing our health can do is to change our looks, and to remove the control we had over them. I may have all the time in the world now, but I can’t do a single exercise to help with what I see.

None of us want to be anything less than the person who lives in our heads. We want to measure up in every way, not just looks, but looks is what the world first judges us on. That’s why it’s extra cruel, we’re being judged on something we have no control what so ever on. So OK, if I were to make a list of the horrid things my health had done to me, my looks wouldn’t be the uppermost one, but it wouldn’t be far below it. It isn’t vanity, it’s about being a perfectly normal human being. Show me the person who doesn’t brush their hair and look in a mirror before they leave their home. There isn’t one. I can show you millions of people who say they can’t do anything about their weight, or the flabby muscles, their liers, they can. When I was 19, my weight ballooned to 18st 6lbs, I was pregnant and OK, over 11bls of that was the baby and a huge amount was proved to be fluid, but I still had 4 stone to lose. I lost all of it, and never, put it on again, we can normally all do it if we are determined. We are the real deal, that small number of people who really can’t do anything about it, and it’s just not fair. Just because we have an illness, or even a rather large collection of illnesses, it doesn’t mean we don’t want to be who we believe we should be. We can switch off that part of our brains, that keep telling us that we can be, or still are, that slim, well dressed and smartly turned out person we always were. In our heads, we’re still there. All those years of dieting, exercising and doing everything right, with the plan of long healthy life, were for nothing.

In my opinion, there are just too many brightly lit mirrors in this world, for us to be able to forget what the truth is. Sadly, it doesn’t matter how many times we tell ourselves, or others tell us, that it’s not our fault; that they love us regardless and always will; that we’re not the ones all those ads, and health warnings they roll out on the news about obesity, are aimed at; it’s always going to hurt, it’s always going to feel unfair. I can joke about it. I can even be positive about it. I can set my eyes to history and see what I want, but it doesn’t change reality. Nothing does.


Please read my blog from 2 years ago today – 30/11/2013 – Never alone

I made a wonderful discovery last night, nothing that will change the world but something that made me feel just that tiny bit more sane. Anyone who has a condition that effect their nerves will have had spells where their skin feels……

It’s up to us

The phone call with Jake yesterday left me disturbed for the rest of the day. I don’t know why, but all of a sudden when I was in the middle of doing something else, I suddenly felt the cold blank fear that grabbed hold of me when I found that I wasn’t there. This isn’t the first time that something odd has happened and it has hung around for hours if not days. When you don’t know why something can happen, you are left with a double fear, what caused it and will it happen again. Dealing constantly with a body that does things that would have many running to the doctor in the belief that they were either dying or going mad, is no picnic. We the chronically ill, are probably the ones who spend the least time in our doctors surgery or calling them out to our homes, despite what you hear on the TV. Listen to the constant reporting on the reasons for the NHS is straining at the seams and you would believe that people like me see our doctors at least once a week, if not daily. I would love to know where they get their figures from. In all the time that I have been housebound, my doctor has been here once. Yes, I speak to him on the phone, but only when I have a problem that I just can’t fix or work out for myself. Spread those calls over my 8 years of being housebound and I doubt that you would find I have even spoken to him more than once every three months and most calls have been under 3 minutes.

It actually makes me angry the way that the chronically ill are portrayed and thought about by those who aren’t ill themselves. Which is the reason that I chose the picture to sit on the sticky post on my home page. I don’t know how that image can be broken other than for more and more of us who are chronically ill, making a stand on social media spreading the truth of our lives. Ask most healthy people what they would do if they woke with a dead hand as I did on Sunday. A hand that didn’t recover full motion or normal sensations within an hour, or as in my case until the next day, and I am sure that more than half would be on their way to the hospital. I just got on with it and wrote about it, as I do with everything else. If I were able to go to the hospital and acted in that way, I would be there at least once every week. But that is the difference between the chronically ill and the rest of the world, we just accept that our bodies are falling apart and there is nothing anyone can do about it. My only contact with any hospital is when my GP feels that the input of a consultant would be helpful, exactly the same as anyone else in this country. In fact, I think it is fair to say that the majority of chronically ill people do everything that they can to avoid going anywhere near a doctor or a hospital. Yet, week after week there it is in the stats being held up as one of the reasons that the NHS is having problems, the number of chronically ill in this country.

The biggest impact we have on any medical body is the time it takes for them to diagnoses us. Over 75% of all hospital visits I have ever had where those when they kept telling me they couldn’t find anything wrong, but they nearly all passed me onto other departments. Apart from a break of the last 9 years pre-diagnosis, where I just gave up and got on with it, which means I had 21 years of that and know that I am not alone in those time scales. Half the time post-diagnosis when we go to the hospital after that point is a waste of time. Appointments where our consultants just nod, smile and say see you next year. If the NHS want to save money then stop wasting our time by dishing out appointments from a rota. Instead, allow us to make an appointment when we need their input. Personally, I got so fed up with seeing my neuro’s nodding head, that I stopped going and I haven’t been there now for 7 years. As we age, I admit that those of us with a chronic illness will start to draw more from their services, but so do even the so called healthy. In fact, if you take into account our lack of longevity, it wouldn’t surprise me to find that it probably balances out in the end.

If we are ever going to break this blame game, or societies view of us as lazy spongers who could if we were just pushed, actually manage to work and care for ourselves, we have a lot of work to do. And there is the problem, we are caught in a catch 22, the majority of us just don’t have the energy to fight anything else. Assumption is often the biggest driver of prejudice. People assume far too much about every subject there is, chronic illness is just another one. That isn’t going to change until all of us who has any chronic condition is willing to tell everyone that we know what is wrong with them, then continue to live our lives well for as long as possible as proof. Once forced to face their own assumptions as being wrong, then there is a possibility that the world will change, but it will take each and every one of us.

As the years have passed I know that I am getting more sensitive to those who in my opinion pick on the chronically ill. I guess it is because I can’t get out there any longer and prove them wrong. I am invisible to the world apart from here in my blog and on Twitter. The TV is my ear on the world and what I hear often hurts. I get just as angry about the way the chronically ill are portrayed as I do about the constant reporting on obesity. I can no longer do anything about my weight, like most who have little to no mobility, weight happens. Yet daily the word is always picking at me that I eat all the wrong things and drink sugar filled fizzy drinks. I do neither. I know all the right things to eat and I eat them in small quantities. Not one program I have watched has ever even once said that there can be a medical reason that someone gaining weight. Rather than being pointedly told over and over to exercise and eat less, I can’t do either. From the day I was diagnosed to the day I became housebound, I portrait a positive view and image of my illness. I proved daily that there was no reason to stop, to not work and not be part of the world. I was sat in a wheelchair, but I looked smart, I was slender and I worked as hard those around me. I am just one person, it would take the same from each and every one of us. but I believe we owe it to those who will follow in our footsteps and wheel tracks.

Please read my blog from 2 years ago – 22/07/2013 – From peace to twitch

Yesterday was a more normal day, we didn’t talk about or work on any of the things that filled Saturday night, I think we both needed that small space to breath, before any more happens. I plan this afternoon after I have had my nap to make a few phone calls and see what I can find out, but……

Wasting or withering

Yesterday I had my shower. Nothing that odd in that as like everyone else in the world, I do have to wash, but it was what I spotted while I was in there that actually shocked me. In the last couple of weeks since being once more up and about after my week in bed, I have felt weaker than I remember ever feeling before. At first I thought nothing of it, I just put it down to lack of food and slow recovery. I have after all been slowly losing my strength now for many years, not being able to lift thing at all that I used to lift with ease. Now two weeks in though I did expect to be seeing some improvements as it is behind my feeling as though I am fading at an increased speed. There were also odd things like I noticed that my knee high socks weren’t just pulling on with ease, but they seemed to have left over material once they reached there. I did check my weight once I was able to start eating again and yes, I did lose half a stone while lying in bed, not dramatic either, probably about right in comparison to my memories of illness, so nothing to worry about and I am sure it will return whether I want it to or not.

I was washing my left arm and was suddenly aware of how pathetic my forearm looked. It was all skinny with an odd shape to it as it didn’t seem to grow much in width from wrist to elbow and when I matched it to my right arm, they were completely different from each other. Even the quantities of skin and fat that I can grasp bear no resemblance, my left arm appears to withering. I continued to pay more attention to my body from there on and discovered there is a reason why my socks seem to have grown, both of my lower legs, but especially my left one have diminished in girth. I remember noticing a long time ago the problem with my arm, but back then it wasn’t as pronounced as it is now and once I was out of the shower and could look in the mirror, I saw the difference in my upper arms too. All the muscles that I have felt getting weaker are now clearly visible in their absence. The result is that I now have an even odder looking body than I thought I did as the fatty flab on my limbs that gets me down now has even less of a muscle structure to support it.

I know it must have been happening slowly, I just made the mistake of actually looking. I don’t normally look at myself at all if I can help it, it’s one of those things that is just too depressing these days. Once you have been unable to manage what even the most unfit healthy people do, your body changes in ways that you just don’t expect. We don’t expect it as none of us are capable of seeing ourselves in any other way than the image in our heads. I for one, hold myself at ages 30 – 35, odd I know most people chose somewhere in their teens, not me, 30 – 35 was without a doubt the time I was at my fittest, thinnest, strongest and closest I ever got to my perfect view of myself. In other words, the mirror image fitted exactly the image in my mind. Mirrors became bad news about two years into my being housebound. The weight had started to pile on as I had gone from very active to sitting doing nothing. Clearly exercise had been off my list of activities a long time before that, but it is surprising how fit just being in a manual wheelchair really keeps you. Especially if like me full speed was all too often the only speed that I went anywhere. I had several near misses in the office where I nearly plowed down different members of staff as they stepped into the corridor without looking to see if I was there hurtling towards them.

Once your eye catches something, well you can’t help but look closer. Stood in the shower it was bad enough to make the discovery that I am withering, but the more I looked the worse it seemed to get. Standing in front of the mirror was just plainly painful and I had to switch off my brain to it as the 32-year-old me was having a breakdown. Once I was dry and back through here, I took a tape measure and checked my arms. There is a difference of an inch and a half between my arms when measured just below my elbows. I have known for a while that my muscles have been slowly diminishing, everyday life has made that clear to me on many occasions. Seeing it like that is somehow different, even shocking. I don’t think any of us, regardless how long we have been ill actually think we will be able to see ourselves vanishing like that. I now have this horrid image of myself in the future of being nothing but bone, skin and fat, without any muscle there at all to support anything. It doesn’t matter how hard I have tried to lose weight in the last few years, the result is at best I can now hold it steady. Getting rid of fat without exercising is never something that happens with ease, even if I can reduce the flab, I still don’t have the muscle there to support even an once of it.

When I took the tape measure to my lower legs the difference was even bigger between left and right. I know because I used to be obsessive about my body shape that my left calf was always half an inch thinner, but nearly two inches is silly. I don’t actually understand that one, as to the best of my knowledge I haven’t taken up hopping around the house on my right leg. My arms make sense, I am right handed so I use my right arm all the time, even if it is just to lift a glass to my lips, it does get exercise, unlike my left that just lazes around. I did when I was first housebound to try and do some exercises, nothing amazing like weight lifting just the gentle stuff. I had two huge problems with it that led to me stopping totally. First it was the gentle bit, in my 30’s I exercised for several hours a day and there was nothing gentle about it. I would be pouring with sweat, out of breath and healthy exhausted by the end of it. Secondly, it was so boring! I had a sheet that had been given to my by the physios, all the exercises were either done sitting on a chair or lying on my bed and I just couldn’t get into them at all. They felt so pointless in comparison to what I had done in the past and so slow. I knew that they were all I could realistically manage, but that just made me feel pathetic, which at the time was worse than I could imagine the consequences of not doing them. I can’t blame anyone but myself for how I am now, if I had done as I was told and kept at it, well maybe now I wouldn’t have a body that all I want to do is hide.

It’s too late for me to even think about trying to exercise. I don’t have the energy that even the most gentle of the most gentle exercises I can think of. The best I can manage is to clench muscle groups whilst praying they don’t trigger a spasm. With so much of my body just looking for the excuse to do something horrid, just moving when I have to is often a risk. Only time will tell what my body has waiting for me, but I have to admit, I wish I had been strong enough to get past that feeling of being pathetic and persisted with the program.

Read my blog from 2 years ago today – 5/07/13 – The hardest conversation

Yesterday I went through what has to have been one of the most tough half hours in my life. We all have those milestones where we have no choice but things have to be said or things have to happen, but sitting with my daughter discussing exactly where I am now with my health and how that clock…….

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….