Tag Archives: finding the truth

Condition blinkers

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I love it when you find something good, almost by accident. Lately, I have been having a lot of neck and shoulder pain, it doesn’t take a doctor to work out why, just as I’m sure you too know the culprit, my wheelchair. I have been doing all the standard things, massage, relaxation, warmth but nothing seemed to be making much of a difference. Just over a week ago, I went for my afternoon nap and settled into bed as I always do. Lie down, obviously, get comfortable, which for me, has to be on my back, but it still takes positioning. I know, surely flat on your back, is flat on your back, I used to think so too, but, it still takes the normal shuffling, for true comfort. Then the last two acts are probably different to anyone else. With my arms either side of me, I reach with my fingertips as though I am trying to reach the bottom of the bed. Doing so, means that I am forcing my shoulder down, so it’s impossible for them to tense, a simple, but effective trick. If you have never tried relaxation techniques, or thought them airy-fairy, or even tried and failed, I can honestly say that I’ve been through each of those steps, and eventually, I became a convert about 5 or 6 years ago. If you are a doubter, skip the next paragraph, unless you’re ready to open your mind just a little bit. The final thing I do is to run through my relaxation process, simple and effective to let me slip into sleep. On this particular day, sleep didn’t come, sometimes it doesn’t, so I lie there for an hour, just running around my body in my mind, relaxing each part over and over until the alarm sounds.

My neck had been really sore that day, so as I couldn’t sleep, I worked again and again on my neck, especially, at either end of it and right around it as well right up to my jaw. The best description I can think of is to say, that I was trying to relax it right down to cell level. Even though I was as sure as I could be, that there wasn’t any tension left, as I had long since passed that point where my neck felt as though it had vanished. I was lying there totally motionless, when I honestly felt something change in my neck, not so much a physical click, but more like a muscle I didn’t know was even there, suddenly let go, and it cascaded. I know better than anyone, that this next line sounds stupid, but it is exactly what happened. It felt as though, a hole had appeared exactly where the sudden change was. It slowly grew, spreading up to the base of my skull and down to the top of my spine. For the rest of the day, I neck didn’t hurt at all, but I was so intrigued, that I tried to repeat it again that night, but it just didn’t happen. Two days later, the pain was back and when I went for my nap, I decided not to let myself sleep. I repeated the whole thing and once again, eventually the same thing happened and the pain vanished for nearly the whole day. That time I wasn’t so lucky in the result, but I had come up with a plan. I have been working on my neck every afternoon and every night before I sleep. Not for the whole hour, as I now know where that “click” point is. I do have to be really relaxed to before I start on it, but as long as I am, I always feel a change. Since I started, I haven’t had any pain bad enough to complain about, and if I do feel anything, even when sitting here, I can improve it. I think what is happening is actually quite simple. I believe, that there is a nerve that is being caught by the tensed up muscle, not near the surface but deeper in my neck than my normal sleep relaxation process goes. With everything as relaxed as I can possibly make it, it is simply released and the pain is gone. Not rocket science, or anything to do with my PRMS or any other condition, other than normal everyday muscle tension, but it’s so worth doing. Hippy-dippy mumbo jumbo finished.

It is actually one of the easiest things to fall into without even meaning to, that everything that is happening in our bodies has something to do with a “condition”. Once you have a diagnosis, or especially, a collection of them, we are very inclined to sit here and try and make it fit, to something a doctor has told us we already have. I used to be so guilty of it, I simply couldn’t have an ache or pain, or something odd happens that wasn’t to do with either my PRMS or Fibro. I even found myself sitting scouring all the different sites, actually hoping that my “new” symptom, would be listed somewhere. It was almost as though someone had suddenly fitted me with a pair of blinkers that I just couldn’t see past. Stupidly, when I got over that phase, I went totally the other direction for even longer. I will actually take a little of the blame of myself, in both cases. For someone who is diagnosed today, there is a wealth of detailed information on almost everything other than the rarest of conditions. When I was diagnosed, nearly 15 years ago now, the internet was still very much a baby and doctors, well they didn’t like anyone putting anything online about health at all. Back them, even companies, like the Mayo Clinic, put up nothing about conditions. What was there, was sparse, mainly put up by people who not only had the condition but were amateur web designers as well. No, you couldn’t just set up a blog, or open a Facebook page, they didn’t exist. There were some fledgling site in the USA, but back then and even today to some extent, the information country by country changes. Having discovered that fact, well, the “new” symptom, might not be recognised here, but what about elsewhere? Eventually, I got fed-up with never finding what I wanted to and I stopped looking. Over the years of not looking, the information improved, suddenly things like nausea were a symptom of MS, according to medical sites in the USA, on some in the UK and definitely not in other places. Trust me, it gets confusing.

You would think that a condition is a condition, that the symptoms that make it up would be recognised and set in stone worldwide, but they’re not. From what I can make out, it doesn’t end at the web, it is just the same story with our doctors, they have just as many varied opinions. As patients, we don’t stand a chance of knowing if we are new ill, normal ill, or iller. If the so-called professionals can’t make up their minds, we are never going to stand a chance of assigning anything correctly. As a rule of thumb, I have come to the conclusion, that it is best to assume, it is something totally new, as I did with all the issues I had with my intestine. So OK, it did land up as I feared, being down to my PRMS, but if I hadn’t been sent to see the Gastrologist, I wouldn’t have eventually been given the right solution to managing it. I very much doubt if I had insisted in seeing my Neuro, that that would have been the outcome.

There is, of course, one other factor when it comes to knowing where our “new” symptom belongs and what is wrong with us, ourselves. I know I have done it once, but I can see that there is a potential for it to happen to all of us. Once your chronic illness is fed up of living alone, it invites its chums along for the ride, and we, eventually, stop caring. A new pain appears, you’re more tired, so what! It’s an easy one to fall into and totally understandable. Putting everything down to current conditions isn’t sensible. For me, it was a case that I was passing out or feeling as though I was about to. I put up with it for years, even after I managed to knock myself unconscious. Dizziness is clearly part of my PRMS, but this was slightly different, as I can feel the blood draining. If I lift my arms when I feel bad, I will pass out. In PRMS, you don’t pass out, just fall over due to lack of balance. I gained another condition they can do nothing about, Vasovagal. They can’t treat it, but there are drugs and situations I need to avoid. Life got easier with an answer. If I hadn’t seen the doctor, I might have been unconscious more often, but now I know. Years have passed and I could with easy now ignore symptoms, simply because it’s too much of a bother to do anything about it. I know, that that has to be avoided.

Our health issues don’t have a start date or an end date, we can get worse with the conditions we have, or possibly better. New ones can appear and often there is a simple answer, even if we think it’s an odd answer, it’s worth trying. It doesn’t matter if you can find it on the internet or not, if our doctor recognises it or not, if it’s there, there is probably an answer. We don’t need to be told, that cures are rarer than most people think, but we don’t have to suffer either. I was the biggest sceptic when it came to anything that didn’t look like a tablet, now I do relaxation daily and it helps me. If there is one thing that I know for sure, if we try to ignore it, it normally get’s worse. On which note, yes, I am talking to myself, I know that my hands are getting worse and I know that the day that I need to pick up the phone and ask for help is getting closer. Yes, I did try relaxation, it didn’t work, well it did when I wasn’t useing them, but the second I did, it was all undone. I know I have been putting it down to my HMS, but is it? They couldn’t do anything about it years ago, is the answer still the same? According to the web, yes, but who knows. Ultimately, no matter what, our health is in our hands and if I do nothing, nothing my hands won’t improve.

 

Please read my blog from 2 years ago today – 01/12/2013 – Accepting it’s happening

Nothing to do with my MS I know but I have a really sore shoulder and arm this morning, whatever happens to me it always seems to be my left side that it happens to. Injury or…..

Every solution breeds a problem

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For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.

 

Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

Mutli national lies

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I did something stupid yesterday. You know one of those things you have promised yourself over and over to never do again, but you do. Thanks to twitter I came across a survey to fill in about MS and our care, it was being run by the University of London and I thought, well why not? I should have stopped there and actually answered the question, I didn’t. If I had thought I would have remembered all the surveys that I had filled in the past. All those pages of annoying questions that bear no resemblance to the real world that I live in. I should have given up on the third question and left it there. But I had answered the easy ones, my age and my sex, the next should have been just as easy. What type of MS do I have? They had supplied a drop down and surprise, surprise, the list didn’t include PRMS. Once again the 5% of us who have this form were totally ignored. The fact it was a British site should have warned me as even some of the British MS sites ignore us as well. It was down hill from then on, the questionnaire had clearly been put together by people who don’t have the condition, but had possibly read a book. They listed drugs as though there were no other options, or that it was even possible that some of us are quite simply untreatable. They also asked questions about symptoms as though they have totally isolated reasons and impact. For example when it came to mobility, they didn’t actually allow for things like weakness, fatigue and pain can affect our mobility, not just our balance. That not all of us can use wheelchairs without assistance and if you don’t live in a house with flat access to the street the NHS won’t give you a powered chair. Almost every question was twee and irrelevant to the real world that the serious end of MS brings with it.

I remembered the first time I filled in such a questionnaire once again I was inspired by the idea that I might be able to help build their picture of the condition. I went in filled with good will and came out wanting to kill someone. On that occasion, I took the time to write an email, filling in the holes they had made and letting them know all that I could tell them. The reply I got back basically said that everything I had added was irrelevant to their study. How can anyone who is looking to help and actually has the condition they are looking at have any irrelevant information, when answering their questions? I was giving them information which fully answered their questions. I can only come to the conclusion that they already had their results in their heads, or worse still already complied and therefore only wanted people who agreed with them to fill in the form. This is something I have come across before, especially with people who are looking for funding for something as they have to fit set criteria. To find that in a period of about 10 years, that nothing has really changed out there, was truly disappointing. It is hard to believe that people working in the field still don’t want to truly understand the condition and it’s real impact on all our lives. Is it any surprise that there are people around the world who are ill and not getting the treatment, support or care that they really need. Anyone who is putting together surveys right now are the very people who will in the next 10 years will be supplying some part of the system and they will be getting it wrong. Sorry if that upset you, but that is the truth as all business models are set up on the back of work like this and unfortunately health is now a business.

In my last job, I was responsible for all the analysis on every area of the company, right down to the actions and results of individuals. I often found myself the hated person in the boardroom, as I didn’t care who’s baby it was that I was tearing apart, I had to tell the truth. You have to be a strong person to sit there and tell everyone that they are getting it wrong. I was in my late 30’s and early 40’s when I was doing that job, I can’t imagine how a university student would feel facing just telling their peers that the structure isn’t covering everyone or even every form of the condition, far less their difficulty in then having to tell their tutors. The flaw in the machine is often found to be in it’s very design and I can see this one is potentially huge and not just affecting studies into MS. It was one of the things that I actually changed in the company that I worked in, I refused to use outside data as a model. People had already fallen into searching online for similar work, then using it as the base to their work. Not one person had thought about it, they justified it as coming from a university, I through it out based on the very same reason. As a company they didn’t even employ people under the age of 25 in any other role than admin, yet here they were using date produced by people even younger. I can see without a doubt that medical companies, be it the NHS or even individual doctors, will use this otherwise expensive to produce data, as the absolute truth, if not fact. That first survey I completed 10 years ago, that I could drive a bus through blindfolded, will without a doubt have been used as a model over and over again.

I personally, don’t trust figures of any sort, if I haven’t seen the data behind them and verified the thought process that led to them being collated, even then I harbour a healthy doubt. All data can be spun, in fact, many people are better at spin than they are at basic arithmetic. I don’t even trust the banded about figure of 5% for the number of people with PRMS. Who produced that number? When so many different medical bodies don’t even seem to believe it exists, how can they say if it is 5% or 10%, or even more? Without a doubt, there are people out there who believe that they have either PPMS or SPMS who, in fact, have PRMS. Right now they are throwing drugs down their throat that will do nothing other than poison their system. They might even themselves not believe they are, working but who are we to argue with those great gods the neuro’s. Tell them, fight with them, not your health and they might just wake up. I find it more than a little worrying to think that my future and the future of others with my condition could come down to a group of people who don’t even know we exist. That is a battle I don’t know how to fight, especially as no one really wants to listen to those who muddy the water. It won’t be until someone high profile developers PRMS and is treated incorrectly that our appearance in the world will even be noticed.

Here in the UK the future of the chronically ill is being changed. Some of the things our government are doing, that even as a disabled person, I agree with, some I don’t and few actually worry me. I rarely talk about politics as they are a personal thing that is easily miss read without the full picture of someone’s life, influences and experiences. It is hard without all the changes intended being laid out in front of us, something that won’t happen for a long time. Right now, though, it looks as though they are working on a “one size fits all” system. After many years of illness, I can say without a doubt, it doesn’t work. It doesn’t even work within one condition, so how could it work from diagnosis to death. I know that right now I could be claiming more financial help than I get, but I don’t need the help it is intended to pay for, so I don’t. To me, just being able to honestly tick the box, isn’t enough. If everyone was that honest, we probably wouldn’t be facing a future where getting anything outside of the “fit all”, will be almost impossible. Or the fact that the “fit all” is going for some to be less than it is right now. It also looks as though unless you have the strength to undergo assessment after assessment, interview after interview and more forms than required to wallpaper your house, that help will not be granted. It sort of feels that they are hoping you will die and they don’t have to give you anything. I could be totally wrong, as I said the full details haven’t been given yet. For all those facing this uncertain future, wondering how on earth the government believe we can exist this way, look no further than that survey you filled in years ago and didn’t complain when you could see that it was clearly flawed.

There is one last problem that surveys supply and is often missed, especially when it comes to health. A year from now, I along with millions of others, probably won’t be well enough to fill in anything other than our beds. We won’t exist at all in their data, nor will our needs and our care requirements. Without any fault in the questions, that fact alone makes all and any result flawed before the first question is even answered.

Please read my blog from 2 years ago – 25/08/2013 – And so it is evening

I am loosing time again today, not minutes here and there but huge chunks of it, how on earth did it get to 10:14 and here I am just starting my daily post! Well there is little I can do about it now, but it is always frustrating to loose time…..

And now the good news

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I did it, I slept until 8:30 this morning! Well almost, I did wake ten minutes before the alarm sounded but that hardly counts. I have to admit that I did wake as well feeling better than I normally do, but I’m not taking that as having any great meaning as I was just amazed that I had managed to go against my routine of so many years. I know it is going to take me a while to know if this new life is going to make any difference, but I found yesterday really hard. I found myself constantly looking at the clock and constantly telling myself off. Firstly for looking yet again and secondly, because I was telling myself off for being behind schedule every time I looked. Habits have to be the hardest thing to break, especially when they are deep set in not just your mind but your heart and soul, my parents really do have a lot to answer for.

I did wake once during the night, there was a pain in my left side again and I simply had to move. When you can’t roll over any longer, there is no other way of dealing with pain or discomfort. I can’t really change position, at most I can achieve a slight twist on lying on my back by raising my knees to on side, slightly twisting my torso. The rest of me, from my head to my waist remains firmly flat on the mattress. Getting up means that I can spend a few minutes putting pressure over the pain that often helps to break it. I have found when it is in my side that during the night going into the kitchen and putting my arm along the edge of the kitchen worktop, I can then lean into to. If that doesn’t work, well sitting on the perching stool and pushing into it just with my hand often does the trick. That though is something that is slowly getting less and less effective as the strength in my arms slowly disappears. Luckily last night all it took was the act of getting up and walking to the loo for it to ease and finally let go. I really find these spasms in my torso hard to handle. I thought that just like the ones I have had for many years in my limbs, that I would find a way of dealing with them with ease, but it just hasn’t happened. What are you supposed to do when the pain is hiding within your ribcage? Having a bony shell protecting it, really makes it difficult and I don’t think is going to get any easier as time goes on. I have found myself being much more gentle with them in the last couple of weeks. Having that letter from the hospital insisting that I needed calcium tablets as I am deficient, sort of worried me. I already know that I have osteoarthritis, now being told my calcium levels are low, has stopped me from beating myself up, just in case I break something.

The more immobile I get, the more I do worry about how I will deal with pain in the future. Nearly all the techniques I have discovered over the years, all require some degree of movement and strength. I am sure that half the time when I wake up with pain, it has actually been caused by the fact I have been flat on my back for the past x number of hours. I do and can still sleep right through the 11 hours at night without waking, but those nights seem to be getting rarer. This year has taken my health and turned it on its head. Until January, I slept through every night, getting up was a real rarity. Now between the pain in my stomach and my lungs, I am up probably two out of every four nights. I am convinced though that if I could roll over like everyone else in this world, that I wouldn’t wake, I’d just change position. Pain in the night has always been an odd one. I now know for a fact that I have the same pain levels at night as I do during the day. There is something about my body shutting down, that means I don’t normally feel it. When I do, it’s because it has peaked and not even a coma could stop me from feeling it. Right now I can still deal with it, I just get up. But what happens when you can no longer just get out of bed and take a little wonder? When you don’t have the strength left in my legs and arms to apply pressure in whatever way you can now, what do you do then?

It isn’t just the pain at night that worries me. I am sure that the fact that I can’t and don’t move while I am asleep, a total of up to 14 hrs per day, can’t be doing my lungs any good at all. It is one of the things that I will be talking to my consultant about when the appointment comes through. I have been waiting a month so far, so I could have another 3 to wait, but there are now quite a few things that I need to ask. I know there is nothing they can do about my not being able to roll, but when something like that is playing on your mind, you simply have to know the answer. I am a little odd like that, even though there is nothing they can do to help, I would still rather know if it is a danger or not than having it play around in my head. I like to know the truth, both good and bad. I honestly believe that knowing the total truth, helps you move forwards in life. The old-fashioned theory of “What you don’t know can’t hurt you”, is madness and a lie in itself. If you don’t know you have cancer, it will still kill you. I personally believe that if you know exactly what is happening to you, you mentally handle the whole situation much better. To me, that is half the battle, as once you have got your head around it, you find the strength you need to make life bearable, if still unchangeable.

The pain in my side may have woken me last night, but today for some reason the whole left-hand side of my body is driving me nuts. It seems to be going for it big style. I honestly have pain in almost every inch of it, from my toes to right up to just behind my ear, where there is a lightning nerve pain sparking up and across the top of my head every now and then. Even the entirety of my left arm is in a state of fatigue ache, heavy and not really wanting to do anything. One day, someone will be able to say why half of my body is a permanent mess while the other half just echos it when it wants to. The good news is that my right side, clearly doesn’t want to join in. There is always something good to hold onto.

Read my blog from 2 years ago today – 11/07/13 – A case of timing

I have already opened all the windows in the hope that getting the place cool before the cloud burns back that I will be able to have a reasonably cool house for the rest of the day. I had my normal nap yesterday but found myself once again lying down searching not just from some relief of fatigue, but also from the heat. I am guessing that the reason this year has……

It’s simple

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I don’t feel that great today, in fact, I have been feeling rather ill for a few days now and it hit its peak yesterday afternoon. As unpleasant as it is, I spend a lot of my time feeling nauseous, so it was nothing new the other day when I found myself at the point where I thought I was actually going to be sick. It was so intense that I was actually hovering around the toilet at one point, convinced that the contents of my stomach were about to leave. At other times, I just headed to my bed and lay down for a few minutes until it passed. Yesterday, I had done the lie-down bit several times including my afternoon nap, but it just wasn’t leaving me alone. When I reached my time to have my teatime soup, I did hesitate about having it at all and I wish I had listened to that hesitation. I also wish that I had listened when I was half way down it when I was sure it was about to return, but I didn’t. I managed to hold onto it for about half an hour then suddenly, I was moving at my top speed towards the bathroom, for the first time ever, my nausea actually turned into vomit, followed by half an hour lying on my bed and Adam worrying himself silly.

It doesn’t take a genius to work out why he was worried, I too was wondering if this was a sign that I couldn’t hold onto food because there wasn’t any space left inside me. While I was lying down I had a brainwave, one that totally ignored the events of the day, the fact I had been feeling sick for days and everything else. My brain was snatching at straws and I realized that later. I had worked out that it had to be the peppermint capsule I took just after I finished my soup, somewhere in my brain the connection was simple. Hot food plus gel capsule meant that it had melted in my stomach rather than my gut where it was supposed to have dissolved, result, vomit. That didn’t explain how I managed to feel sick for the rest of the evening as well and when I reached 9pm, I stopped kidding myself. Not only had I been feeling sick all evening, but when I was sick it set off a trail of spasm in my guts and for the first time in a couple of days, I was passing the wind, nothing else, just wind. Once again, I was also hardly able to rest my hand on my stomach and I don’t have to be a doctor to know it isn’t really a good sign.

I have 10 days of food inside me at this moment, including 5 days of Psyllium, with no signs what so ever of anything changing. Last night when I took my meds, I also took a dose of my laxatives. This doesn’t mean I have given up on the Psyllium, not at all. What it does mean is that I don’t think it is standing a chance of working with so much ahead of it that isn’t moving at all. I also thought last night that it might be a good idea if I didn’t eat anything more until I managed to at least get rid of something that is already there. I went to bed on a high, you know your life is no longer normal when you go to bed as though you were a child expecting a visit from Santa, because you are hopeful of going to the loo. But that was exactly how I felt, I couldn’t imagine anything better than looking forward to a day without feeling sick or being sick. Even lying there still feeling sick and in pain wasn’t pulling me down at that point, waking this morning feeling sick and with no signs of anything else, did though. Right now, I am sitting here feeling rather pissed off with the whole thing, as once again I have done what my doctors have told me and landed up feeling worse than I did before. I have lost count how many times this has happened to me over the years and each and every one has left me disheartened and wanting to give up. The hard thing and, unfortunately, the only thing to do on occasions like this, is to persevere. So today, I am going to eat, even smaller quantities than normal, so more grazing sessions, but hopefully ones that won’t have me in the bathroom in minutes. I am going to take my Psyllium, a small amount in each graze session and if I don’t go to the loo before bedtime, I am also going to take more of my laxative. I know it is about time and I will give it that time, but I am sure that what I did wrong was not give it a level playing field to start with.

Doctors, websites, and blogs, all seem determined to make everything that they ask us do, to sound really easy. Which, to be honest, is a hugely unfair and I believe is the totally wrong approach. I don’t believe that it is just me, I can’t believe that there are people out there who feel better about anything by being told a pile of lies. It doesn’t matter what it is, from the very first medical lie I remember being told, that a needle being stuck into you feels like “a little scratch”. A needle being stuck in you, surprise, surprise, feel like a needle being stuck into you, where did the scratch come from? I have to admit that the doctor didn’t say that the psyllium would work instantly or that it would be palatable without a load of experiments, but all the websites I saw, did. Well read the last few days and there is the truth, so I am going to do this my way. Clear myself through, work on finding different ways of getting it into me and be ready if nothing happens in 5 days, to once again intervene, then raise the dose or change how and when I take it, and try again.

Being jollied along into doing things that the person who is doing the jollying wouldn’t do themselves, is dishonest. It fits in some ways into what I said yesterday if you are going to have to do something over and over, like drink something, and that thing is unpleasant, well it’s wrong that anyone would expect you to do it. I am willing to try anything but note the word “try”, it maybe should be in capitals as if it is wrong in any way, I will stop trying, especially when I see the word “liar” flashing in front of those doing the jollying. Right now, I am sure that there are millions out there who have bought recommended treatments and thrown them away because on their first attempt they spotted the lie. Is it really that hard to just tell the total truth?

Read my blog from 2 years ago today – 26/05/13 – Trust in science

I guess it’s because I write so much that I constantly have questions asked of me on twitter, which I am more than happy to answer as far as I can, but to me one of the curious questions I keep getting is about different medications, what I think of them, their effect, side effects and so on. I can say that without the…….