We never stop doing it again and again

There was a reason behind my sudden decision in dying my hair this weekend, I have a hospital appointment on the 7th of September. When I had my COPD exacerbation my GP thought it was about time that I returned to see the consultant. So three months on from the actual time that I couldn’t stay awake because I was too ill; when I was permanently dripping in sweat from my fever and unable to break that fever; when I was unable to breath because my lungs were filled with water, that persisted in attempting to drown me when I coughed; when I was so clearly confused that I was unable to write or even talk at times, I am at last making going to see the consultant. Adam is going to phone this week to arrange the transport, so I thought it was about time that I started to prepare. I know it is two weeks away, but when you live with a totally unpredictable body, getting ready on any day that allows you within the proceeding month, is a good idea. I am at last starting to get used to that type of logic, as odd as it is, it is the only form that truly works. I know without a doubt that if I waited until the week before, my body would have come up with some form of hell that would have made it impossible. The result of having to go out with two inches of grey hair showing, would have been mortifying and don’t tell me people wouldn’t notice, they would.

Just like everything else that doesn’t fall into my normal activities, I paid the price for it that evening and on into the next day. I didn’t make things any better when I had to stick to a promise I made the weekend before. I stupidly last Saturday evening said to Adam that I had had an idea of suggesting that we had a pizza that night, but I hadn’t carried it through. The look on his face at having missed the possible culinary treat meant that I promised we would have one next weekend. So there I was tired, in pain and trapped. I know I could have explained and just said I wasn’t up to it, but a promise is a promise, so pizza it was. I’m not good with food in the evening, but I decided that as long as I kept it to nothing spicy, which is totally easy for me as I don’t believe that spice belongs anywhere near a pizza and that I continued my vegetarian theme of the last 8 months, I should be OK. I don’t know what it is about meat, which to be honest I have never really eaten a lot of, but recently, it has been like putting a nuclear explosion inside myself. The pain is unbelievable and unbearable. I honestly don’t think my choice of food did any harm, it was the quantity so late in the day. Even though I only had half if it and kept the rest for Sunday lunch, the pain was kicked off and took hours plus morphine to settle. Half a small pizza and I have to reach for morphine so that I could sleep, life really has landed on a different planet.

You would think that my experience from the day before would have stopped me from eating the rest the next day, well you might, I didn’t. I ate it with the same relish I did the day before and without the follow on pain. I ate it as a part of another one of my theories and this one I was reasonably sure was right. At night I sit somewhat crumpled on the settee, during the day I sit upright with good posture at my PC, there was the root of the pain the night before. I had sat there stuffing food into my crumpled body and it didn’t know how or where to put it. The useless mess otherwise called my intestine had quite simply gone into spasms fighting each other throughout. Some were trying to do the normal act of moving food through me, but they were coming up against the impossible locked down spasms ahead. I have been mildly aware of it for a while now, hence the fact that I don’t eat at night. I would far rather be sociable and sit beside Adam than sit at my desk and eat alone, even though we would only be ten feet apart. Don’t get me wrong, lunch wasn’t pain-free, but there was little comparison between the two. I was so chuffed at getting it right that when it was time to move to the settee to sit together and watch TV, I had totally forgotten about pizza at all. Bad mistake.

Half an hour after I sat on the settee, half or all of it, probably the all, were in various parts of me and were all determined to cause as much pain as they possibly could. If anyone out there had been wondering why I eat so little, well there is the answer, eating what anyone would call a reasonable amount of food, spins me into hell. My theory was shot through, even though I don’t have the slightest idea which pain belong to which meal, the result was the same. Portion control really is everything and going forward, will be observed far more closely. The worst of the pain lasted about 3 hours. I know I could have taken a Morphine booster, but I wanted to keep that until I went to bed, sleep is precious. I honestly didn’t know what to do with myself in the first hour. I switched positions, applied pressure, stood up, walked, sat on a hard chair, the settee and even the settee arm, none relieved anything, other than for a few seconds. As a Mum, I can say with total confidence it was like being in labour, without the gas and air or the pethidine. If it had had a blind midwife handy, I would have been screaming for both and a little more on top. When I did take my Morphine it was heaven. This morning it is nothing like as bad, but I am a very long way from comfortable, there are spikes of pain followed by discomfort, then pain again. I don’t know how many days of this I will have to go through, I am guessing probably several. Only time will tell, but I went to the loo three days ago and it’s normally once ever 8 to 12, depending on luck. My stomach kicking off like this always means that my chest goes just about as mad in an attempt to keep it company. Taking a second Morphine booster may not have seemed like a good idea on one hand, but it was necessary on the other. My gamble paid off as even when I took that second one just after 3 am, I passed by the vivid dreams without even noticing them, if they happened. I may have once again woken in the middle of the night by pain cutting my body into pieces, but once I was fully awake I couldn’t miss the fact that that headache was there again, along with the high pitched squeal in my head and the nausea, all of which are still with me this morning. It is going to be one of those days.

Adam cleaned my wheelchair for me yesterday and moved the unit in the kitchen doorway as far back as possible. I took a couple of runs at it while he was there and just as I thought it is a little easier, but it is really going to be a matter of practice. Once I get that correct speed of approach and angle, I will be fine. It honestly is all about learning these things, which Adam wasn’t that convinced about. I may have never driven a car, but Adam has and when I compared it to his beloved ability to park in small spaces, he got it. I am going to take the chair out later today or maybe tomorrow. I want to try all the different things I have thought about that might be issues and work out what can or can’t be done, bought or changed to make life easy. I think one of the hard bits is this settling my brain into the fact that my chair is once again going to be part of my life. I honestly thought that I wouldn’t feel this reluctance to just take it out of the cupboard and keep it out, but that isn’t going to happen yet. I know that I have to get things a perfect as possible before that day arrives, otherwise, I will find every excuse to put it back and leave it there. There is one big fear that I haven’t written about before and this is the big question of is my body up to this. I know until I try, that I can’t answer that, but I am worried that I am going to cause myself a lot of pain.

When I was using my chair full time at work, I wasn’t then getting any pain in my chest, and your chest muscles are pulled this way and that constantly. It is possible that I just won’t due to pain levels be able to get around, especially when my chest is in one of it’s constant spasm phases. Just the strain of pushing myself around could be enough to trigger spasms, I just don’t know. Back then it was magical to me as the center of my pain was in my legs. Unless you are pushing yourself to move at speed or to go up hills with too high an incline, the pull on my thighs is minimal. The pull on your arms and chest is astronomical. Luckily neither are an issue in the house, it will be far more about slow, steady and controlled. Despite all the planning and preparation in the world, chronic illness is the most unpredictable thing you will ever have to face. It is also a total expert when it comes to turning everything you think you know, that you believe you have worked out and every single thing you have ever learned, totally upside down.

Please read my blog from 2 years ago – 31/08/2013 – Everything is going wrong

It is beginning to feel like the entire world is against me, my PC has almost die! It thankfully gave me a message yesterday afternoon saying that the hard drive was about to die, it was so late in the afternoon that there was nothing I could do about any of it, especially as I didn’t have….

It’s personal

There are some bodily functions that in the past few years I have learned to hate. You know those things that we have no control over and in the main don’t even know are happening. That is until you are living with a condition that specialise in putting your entire life under a microscope. Last night, I had a bout of yawning, those ones that actually feel as though your lower jaw is going to dislocate. Something I am personally glad to say doesn’t happen that often, but when it does, it is something I don’t forget about in a hurry. I am sure that all of you know exactly the sort of yawns I am talking about, but I doubt most of you have tried this while your diaphragm is in spasm. Last night, just for an extra little bit of fun, I had two bands of intercostal muscles also in spasm. Painful? YES. It is like being inside a Victorian corset that someone is trying to their hardest to tighten just that bit more. As they apply more and more pressure, your insides which already feel as though they are about to burst free in response, try to spread into all the wrong places. If that wasn’t enough, there was one other issue, Adam was sat beside me. He knew I was in pain, he has lived with me long enough to know that. He has also lived with me long enough to know that I would have been covering the true pain and showing as little as possible.

We all learn our behaviours, covering pain is one that I learned a long time ago. It started in childhood, as we the children weren’t allowed to complain about anything and that included pain. We weren’t cuddled or soothed in the way as parents do these days. That wasn’t the fashion of our post-war parents. Being either sick or showing any weakness of any sort, just wasn’t acceptable. We were brought up to show a stiff upper lip and get on with life. If we weren’t sick enough or in enough pain to be in bed or hospital, we were well and fit enough to get on with life, go to school, do our chores, all without showing any ills. When my MS was unknown to anyone other than me, I was the mother of two small children. I was also the wife of a someone who because the doctors could find nothing, had decided that I was a dramatist and had no time for what he called my antics. I learned again that I had to cover everything that was wrong with me. The children couldn’t see me in pain, that would have just upset them, so I learned. My husband, who, fortunately, wasn’t around all the time, also had to be lied to, so I learned again. My lessons in acting over the pain in those early stages, when to be honest looking back weren’t anything at all in comparison to now, became part of me. They were lessons that meant I throughout my life since then has carried me through the whole horrid thing. I could work through the pain, I could even dance through it, just occasionally having to declare a so-called cramp, well it was only a partial lie.

I know that I don’t have the slightest reason on earth to hide anything from Adam, but I quite honestly, can’t stop myself. It is actually so much part of me, that I act even when there is no one here to see it. I doubt though that even the greatest actor on earth could totally cover the pain that enters my life from time to time. There are now times, like when I start yawning at the totally wrong time, that can’t be hidden totally. I might be full of Morphine and acting the hell out of life, but the pain is now visible. My face may not show it all, but my body lets me down and it reacts without permission and it is doing it more and more. I don’t like that, I don’t want Adam to have to see the truth, he worries about me enough without me showing what has always been hidden from everyone. I don’t want him distressed and feeling my pain, it’s one of those things in life that is mine, it’s somehow personal. Illness is intensely personal and I believe that is often forgotten by those around us and especially by our doctors. I know that my writing every detail in here, means that Adam has a view into it and gives him permission to be part of it, just as I have given permission to you to be part of it. But it’s still personal. As much as I know that doesn’t make sense when I read it back, it make perfect sense to me. I would actually put money on it that those of you with a chronic illness who are reading this will also understand.

This is my chronic illness, each and every one of them. It doesn’t matter what the medical stats say about how many of us share these conditions or how many of us share all my symptoms, they are mine, just as they are yours, if you share any of them. Whatever they are doing to me, it is my body they are attacking, it is me that feels it, sees it and lives with it. Doctors have our permission to poke and prod us, they have our permission to look inside us and to take our blood or even parts of us in a quest to diagnoses us. Their view of us is as an illness or a problem to work out. But it is our body, our insides and our diagnoses and all of those are intensely personal. The younger doctor, well on the whole I think they get that one, but the older ones, well most don’t even see us at all. At best we are a case, at worst we’re not even that. If we don’t fit into their speciality, we’re a waste of their time, time that now means they have to pass onto someone else as quick as they can.

I actually wonder sometimes if the fact that I do pour out daily what is happening and what my feeling about it are. If that actually makes me more precious about holding it all inside when it comes to my interactions with individuals. It doesn’t matter if it is Adam, Teressa or anyone else, talking about what is happening to me, either at the second or after, is something I try to brush over. How I am in microscopic detail, is in here. How I am when they are talking to me is in my voice, my words and my eyes, what’s hidden is hidden because it’s a form of personal and doesn’t need to be spoken about there and then. My brush off a statement of “I’m fine”, is there because there is nothing they can do to change what is happening to me. If I can’t change it, how can they and their worrying about it is going to do nothing other than make them feel bad. Which is another reason why it’s personal, I personally don’t want them to become ill out of stressing about my being ill.

Please read my blog from 2 years ago – 23/07/2013 – What annoyed us

When things don’t work it caused frustration for all of us, I am no different and I am heading for a really loud and explosive scream……


Tiredness and nausea got the better of me last night and I headed to bed early. I wasn’t long after 8pm, just long enough for my meds to be kicking in and I simply couldn’t face any more of the day. Adam had some studying to do before college this morning, so I didn’t have to go through that guilt kick that echos around me when I have to give in. Making my decision to do what is right for me, doesn’t mean I won’t feel that it’s wrong, but it did make it oddly easier to take the decision without hanging around for ages swithering about it. I had actually been feeling sick for most of the afternoon and neither my nap nor my anti sickness meds seemed to be touching it, usually they work really well. By the time I was due to take my night-time drugs, I once more found myself sat in the kitchen looking at them and wondering if I was going to keep them down. There is nothing worse than that feeling and it’s one you don’t ever find yourself having to fight until you are really ill. In the past feeling sick meant you just didn’t eat or drink anything when it is at it’s worst, these days I don’t have a choice, I needed and had to take them. Lying down was a blessing and pure relief, when the world is swimming, horizontal is the only position that feels safe and sleep took over quickly. It didn’t last that long though as with less than an hours sleep I found myself awake and in the worst pain I have had in the past couple of weeks in my abdomen.

There didn’t seem to be a single part, top, bottom or sides that weren’t screaming at me and it was totally out of the blue. I just said a couple of days ago that everything had been surprisingly peaceful, but not last night. I lay there for a few minutes hoping that it would just pass, that it was just a trapped air that just needed to move, but it didn’t. The pain was so intense that it was causing my nervous system to go into overdrive. Odd sensation from the insides of my thighs being frozen while my feet were on fire, to pins and needles in my hands and the skin sliding off my face were all there, but when my pet hate, that feels like bubbles just under my skin running all over the place started, I decided it was time to put a stop to it. I knew that there was no other choice than to take a booster pill as it wasn’t going to settle by itself and if I wanted any more sleep. I don’t get what it is about lying down that amplifies the pain, but the second I was sat up on the edge of the bed to take my tablet, the seed of the idea that I might need outside help vanished. Yes, the pain was still there, but it was bearable when sat up, which isn’t a word I wouldn’t have attached to it seconds before. I always thought that it was a psychological thing, as in you have nothing else to think about once you are lying down in the dark. The pain isn’t any worse there, it’s just that you have nothing else to distract you, clearly that was rubbish. Nothing had changed other than my position, if something major was going on, I would have felt no change, position doesn’t change facts.

This morning I am in exactly the same position, even though I actually slept well once the booster took over. There is this immense pressure that I know without trying if I were to lie down right now, would change straight into pain. It’s knowledge like that the total screws with your brain, because it doesn’t matter how tired I might get, I would in the “normal” world be faced with a set of choices, stay awake until I can’t stay awake anymore, try it and see which means putting myself possibly in pain, or taking a booster half an hour before. The first doesn’t work at all, do that and I will send my PRMS into free fall and I will suffer for it for days. Clearly the final one doesn’t really work when you can be fine one minute and dead on your feet the next, planning and chronic illness don’t go together, ever. So I am left with the suck it and see approach, but that causes problems as well, as the booster takes time to work. This is just one of those wonderful loose, loose situations that our health has lined up waiting for us, but it’s also a great example of how you can be left feeling that you just can’t win. There are times when it feels as though there will never be one simple act that you can just do, without having to weigh up the possibilities of what the outcome will be. I don’t thnk there is a single thing in my life any longer that I unlike the old me, although I might think I have choices, I actually don’t.

I can only guess, but I think that if I were to look back over the course of my illness as the real choices in my life have vanished at the same rate as my health has become worse. I never thought that there would be a day when I would find myself looking into my own kitchen cupboards and have to dismiss nearly 90% of what is in there as impossible for me to eat for an array of reasons. I couldn’t have even guessed back then that I would be facing a life without choice, so OK right now I do have some choice, but they are getting more and more limited. For years, I have been guarding the choices that are freely mine, like whether I smoke or not, what colour my hair is, silly things but things that are my choice. Living inside a tight routine, one that was the only way of holding my PRMS level, removes much of the choice that most people have, but it was worth it. From talking to others who also have MS and some with Fibro, they too have found that routine has been almost magical in the way that it lets us remain reasonably well, if not healthy.

To date, I haven’t come across one person who has said that routine has failed them as time has progressed. I said a couple of days ago that I was going to think through the whole process as it is so clearly not working any longer. I haven’t sorted it all out yet, but I don’t think that throwing the routine out will actually help, but clearly working reactively to each day is equally a bad thing. Counter to what logic would say, nothing is really simple when you don’t have a choice.

Read my blog from 2 years ago today – 4/06/13 – Is it age? Is it health? Or is it just life?

I wasn’t too sure that I was going to write about this morning, in the last few days things have followed as always with what is wrong with me and what is happening in my thoughts because of it. I was thinking through some possible starting point, I always work in the same way with just a sentence and then it flows on its own. But I was having trouble to find just…..

"Are you alright?"

The first day of June and I have just turned on the fire yet again. I honestly don’t know what is going on this year, it is as though everything stopped back in January and hasn’t improved since then and I’m not just talking about the weather. It’s just been one long odd year so far. I suppose when you are caught up in something that is happening to you and you can find no relief, well it distorts everything else. I have tried so hard not to let myself ever be isolated inside myself throughout my illness, but somehow I feel as though I am suddenly failing to do so effectively. I have realised that Adam is even noticing the change in me. I have lost count the number of times he has asked me recently “Are you alright?”. It’s not so much his words but the true look of concern and confusion as though he is trying straight away to see past whatever the words are that might come from my mouth.

When you live your life locked in pain it is easy to stay there and to not reach out and be part of the world around you. I have made a point of not letting our conversation be stifled by it, to keep in contact in the same way that as I always have, with a mix of small talk and deeper subjects when needed. Lately though I know that I am failing when it comes to small talk, replacing it with silence. As they say it not what is said but what that is held in the science that matters. In my case all too often it is nothing more than pain and the deadening effect it has had over my life. The rest is a side effect of the same, as when you are locked inside you stop paying attention to what might be said later in the day. The TV and internet that have managed to keep me so involved with the world aren’t managing to make their way into my brain as they usually do. We are both used to my having an array of things to talk about and being able to pick up in Adams words clues that pull our chatter in other directions constantly. Locked inside myself, I now all too often don’t hear the subject of his words, far less the opportunity to deviate on the subject.

I used to be so good at putting my health into a compartment where no, I couldn’t ignore it, but I could control its impact on everything else. Somewhere along the passing of this year, it has escaped and the pain and discomfort have taken control of everything else. It is as though I am in some parallel universe within our home, sat here but not here at all. I know I am often just sat staring into space, facing the TV or my computer screen, but totally unaware of their existence. “Are you alright?”, will suddenly cut through it and I am grabbed back into reality to find that once again I had vanished. I can see the concern in his eyes, as he already knows the answer to his question. He knows perfectly well that I am somewhere else, he also know from my body language that pain has hold of me, but he’s not used to seeing it. My skill of covering up the annoying and the draining is now quite extensive, with so many years of practise if I couldn’t cover it all, well I would consider myself as pathetic. You can’t live your life showing those around you just how things really are, not if you want any form of a life you might call normal. I thought that it was a skill I no longer had to even practise, it was polished and perfected. Yet here I am slowly failing again and again to cover anything over.

I know I don’t have to hide it, but I don’t want anyone constantly worrying about me more than they already do. Adam has to be able to leave the house not fearing every second that he can’t physically see me, is a second where he could somehow be helping me. Not that anyone can help when your body is destroying you, if anyone could, believe me, I would have taken it long ago. “Are you alright?”, each time I hear it I instantly know that once again I have failed, that once more he isn’t seeing me, he is seeing my pain. That’s what I didn’t want, that’s why I hide the truth as I am a person, not a person in pain. Just seeing his pain and concern over what is there in front of him, causes me more pain, because it’s my pain, not his and my role is to protect him from it and I’m failing.

This year things have changed so much and changed so rapidly that I haven’t been able to keep up with it. When I was writing yesterday about flares vs. progression, this was what I was really writing about. Flares are sudden, they cause trauma to all concerned but their quickly over and life is rebuilt and goes on. Progression is slow, insidious and uncontrollable, you can’t rebuild as it doesn’t give you those points where renewal can happen. As fast as you might find a chink where you can get a finger hold and start the process it has changed again and you are once more floundering, lost and hearing “Are you alright?”. No, I’m not but I don’t want it to be seen all the time. I want it back in that container just off to one side where life goes on and it quietly grew without daily or hourly impact. This year has found me living further and further under a millstone. One that once it has reduced me to powder doesn’t even allow rejuvenation, it just starts to grind again. There aren’t enough hours in a day to sleep or enough minutes in those hours to rest. Everything just keeps growing and as it does so, it is swallowing up the “me” that I was holding onto so tightly.

This is the start of month six, my sixth month without a single complete waking hour where I haven’t been in pain. I don’t suppose it is a surprise to anyone other than me that I can’t cover it up. That I can’t show a bright and breezy face to life and smile my way through every minute. I am so tired, so past the point of making light conversation and ignoring the truth. I just want a week off, a holiday where I can renew and refresh, time to recharge my smile and time to find those chinks that I can hold onto. You see, I know they are there, they have to be, life always has them. Unfortunately, you can’t take a holiday from your health. I know I am just feeling worn down, it happens to us all and I suspect that I did set myself up for this one as I believed so totally in what the consultant was saying, yet nothing has changed at all. I know I have to give it more time and I can hear all that goes with those words. I just don’t want to be sitting here at the start of July and having to say this is the start of my seventh month.

Read my blog from 2 years ago today – 1/06/13 – Just too much

I realised last night that my toenails were really needing cutting and I asked Adam if he could cut them for me at some point over the weekend, he offered to sort them right then. It was at that moment that I said something I know I say to him again and again, but it’s a statement that along with the reality of the process, conveys just how exhausting life with illness really is, all I said was “I’m too tired”. If you think about it…..

Progression in action

I had a bad night last night, mainly down to my breathing, but I was also up twice for reasons that I couldn’t pin down. It started during the day, once again I was in pain right around my diaphragm just as I am right now, but around midday it was joined by an area of my intercostal muscles that I rarely have problems with, from arm pit to arm pit is probably the best way of pinpointing it. As you know intercostal pain isn’t something new, it has been around for a couple of years now, but it does mainly occur from my breast level down and yes I still have the collection of bruises to prove it’s intensity. I had in the last few weeks had the odd occasion when my breathing was tight, I also had an area behind my breast bone along the same line where I could actually feel the air entering my lungs on every breath. It wasn’t painful, or even did it come with that well-known pressure that the spasm in my upper body seems to cause, it was just this strange feeling of being able to really feel the air entering and leaving me, just as I would fell the process of swallowing any liquid. I put it down to an overactive imagination, when you have spent as many years as I have trying to listen to my bodies every action, you actually do start to feel things, or at least think you do. When you concentrate too much on something, that very concentration means you can trick yourself into believing that you feel things that just aren’t there. I reckon that what I am probably really feeling is the muscles reacting to the message of breath in or out, rather than the actual air. Anyway, at times I know there is no imagination, as I have clearly felt it getting slightly tight and almost rasping as I force myself to breath using my diaphragm as little as possible. Last night though was different, for the first time ever there was a clear pressure, an area that was in spasm and I was struggling against it just as I do with all mild spasms. Ever since I was put onto Morphine, I have found that for me to feel pain from a spasm it has to really work hard. Most spasms fall below that level and what I feel is the pressure that occurs in the muscle and that was what had arrived the other day in my throat and last night in my bronchi. Five inches below my neck I had a ball of pressure, not acid reflux or anything like it, it was clearly the pressure I know as a spasm. I feel as though I am caught in some kind of sick game of dot to dot, my body is slowly bringing all the different areas that were clear on the journey of my vagus nerve into one complete picture.

This morning I am sat here feeling all the area of pressure in my abdomen and chest that two or three years ago I had to lie down to be aware of them and right now I am not just aware of them. In some ways, it sounds like a really slow process, but on the other hand it has felt really fast to me. I can think of no other thing, other than pregnancy that has changed me physically so quickly. It kind of feels as though it has all happened in the last few months, when in fact I know it has taken years, it is just in the last few months that it has gone mad and started to stomp all over me, with no regard as to how essential that function might actually be to life. I think it was about 10 years ago that I first became aware of the vagus nerve, I kept passing out, at worst I passed out and in the process knocking myself unconscious. Most of the time though it was just this sudden realisation that I was going to pass out, after I knocked myself unconscious I took to lying down where ever I was, as I had collapsed due to trying to make it the living room. I discovered slowly that there were triggers, if I lifted my arms above head height, say to shut the curtains, I would feel terrible. Actually that was the very first job I handed over to Adam, it was that much of a danger to me. I was sent to see a heart consultant and after running tests, I was diagnosed with Vassal Vega, once again though the consultant said it was atypical and he believed that my PRMS was playing with the Vagus nerve, something I knew nothing about. It wasn’t until two years ago I discovered just what the Vagus nerve did and how much of our bodies it controls. I had lost control over my bladder years ago and to this day that hasn’t really changed, my cupboard has plenty of catheters that I don’t use. When the issue grew with my bowels, then my lungs and the more consultants I saw, the more this Vagus nerve seemed to be involved in. I now know it controls nearly every organ in our bodies, it is essential to life itself in far more ways than I even like to think of.

In just four months my body has taken all those vague odd things that happened and vanished and turned them into the focus of my life, in that regard, it has been really fast, but from one clear problem, to where I am now, 10 years, well that’s slow. Progression is an odd thing, I don’t have the slightest doubt that all the things that are driving me nuts have actually also been behind many other phases over the years, I just wasn’t feeling their action, just their results. Progression now means that I feel the action as well and what I feel is opening up the truth of what has slowly been happening all along. This morning I am tired, not the fatigued, just incredibly tired. I didn’t want to wake up or get up and when I did, I was yawning so much that tears kept rolling down my face, why do they do that? I have a collection of spasm, not the painful type, but they are there either for a few seconds, a few minutes or like my diaphragm and the arm pit to arm pit intercostal spasm, permanently since I woke. 3 years ago they would have been vague shadows, discomfort that I wouldn’t have been able to explain or pinpoint as belonging to anything and nearly always the appeared when I lay down. 2 years ago, they had formed into those lines or areas of pressure, but with no other knock on effects, just annoying and uncomfortable and appearing whenever they wanted but worst in bed. 1 year ago, the pressure learned how to change itself into pain and bruising, my position still played its role and horizontal was still the worst. Today not much different in their split between pressure and pain, but now there are more of them, spreading from my pelvis up to my throat, progression in action, what will I be able to add to this one year from now.

Read my blog from 2 years ago today – 14/05/13 – Responsibility for NHS costs

Well, I may have found a clue and possible reason to these totally annoying headaches but I am still lost with so many other things. That is for me the most annoying thing about an illness like MS, if you don’t know where the attack zones are, it is almost impossible to work out what is causing what, or if there is no connection at all. I remember clearly the day………