Above and beyond

Posted on February 27, 2016 by livinginalimitedword

I made a breakthrough last night and it came in a way, I never expected. The pains in my abdomen were so severe, that I, myself, was beginning to think, that an ambulance might be a very good idea. There was no bloating, no feeling that there was anything there, other than what I had consumed. The pain had shifted from imitating first stage labor, to full on second stage, just not quite in the right places. Some of it was low down, but the bulk, was in the middle and yes, across the top and into my back. By the worst of each wave, it had taken over my entire abdomen, from my pelvis to my shoulder, and I could feel it right through my body as well. Each wave varied in length and with each, I found myself naturally controlling my breathing and rubbing my back. By early evening, the pain was causing me to break into a sweat and to feel sick. I tried an anti-nausea pill, but it didn’t touch it, which told me, it was the pain, not anything else.

At 8 pm, it was time to take my meds, but, I couldn’t trust myself, that I wouldn’t throw up, so I took the decision, to make myself sick. I couldn’t believe what I threw up. It was 4 hours since I last ate, so there shouldn’t have been much there, but I found, at least, a liter of liquid, mixed with almost everything I ate at 4 pm, but no psyllium pancake. The pain didn’t change, but the nausea vanished, and I took my meds with ease. I sat with Adam and we mapped out a timeline, not just of what has happened this week, but right back and we think, that my splitting the dose of my psyllium pancakes into two, and raising the dose, could be behind some of it. We think what is happening is the first is causing a plug if you like, that moves forward slowly, not a problem with 24 hours between them, as overnight a gap is formed. But if a second is added 4 hours later, well then there is nowhere for anything that follows to go. So, I am backtracking 100%, as of today, I am back on the dose I was on 4 months ago. It’s going to take a few days for my system to clear through, and at this second, I am in bad pain again. There is nothing that I can do right now, but put up with it, but just having a plan, somehow helps. If in a weeks time, I am still like this, then I will phone my doctor. I’m waiting because if I’m still like this, then I will be able to say that there has been a huge change, in what is going on and without a doubt, I can’t live like this forever and whatever the solution is, I want it.

I know that it will sound stupid, but I quite simply haven’t been putting two and two together lately. I have been feeling so rotten and so tired in the last month, and for some reason, I haven’t been associating the fact that this pain is most likely, behind at least part of that. Because it’s been all centered around my guts, I have continued with it, in silence most of the time. When I saw the consultant who put me on to the psyllium, he was quite open, that there was nothing he could do about the pain. Until recently, his solution has worked. I was never free of the pain, that was just one of the things that was part of my life, so I lived with it. There have been many days when things were just as bad, as they have been this past week, but, they were just days and they passed. When it changed and became once again difficult to rid myself of my intestinal contents, not because I was constipated, once they move, my stools are perfect, but because there just wasn’t any movement, I did what I thought was logical, increase the dose. I was trying to increase the bulk so that it would move, but all that extra bulk is doing, is causing me more pain, but I didn’t see that either.

It appears that intelligence doesn’t grow with age. That it doesn’t matter, how many years you pass through, when it comes to stubbornness and that stupidly taught stoicism, they only increase. Just because someone says “there is nothing they can do about the pain”, it doesn’t mean, that you have to put on a smile and live with it. These last few months, that is exactly what I have been doing and where has it got me? Somehow, I have separated the pain in my abdomen, including my chest, from the pain in the rest of my body. Why I have separated them, I don’t have the slightest idea, as the cause is exactly the same, my PRMS. Yet somehow, I decided that the results were two different things. When I contacted the Doctor last month about increasing my pain relief, I still wasn’t including this pain. I was looking for help with the rest of me, and that was exactly what I got. As I said yesterday, pain isn’t just pain, there are so many different sorts, and so many different locations and just as many cures. The Gabapentin deals with pain caused by nerves, this isn’t nerve pain. This is the pain from good muscles trying to compensate, for muscles that no longer work. They are having to shove like hell, to move the contents past the dead zones, and that also hurts like hell. The answer, I don’t have a clue. As my consultant said, the psyllium provides the bulk and the lubrication, it can’t do the work of dead muscles.

So right now, I am writing because I don’t know what else to do to take my mind off the pain, but as you can see, not even this is really working. Every time I have tried to pull away from “it” as the subject, I have landed right back there. I don’t have the slightest idea now what to do, as I have taken right up to my maximum dose of Morphine and although lessened, the pain is still here, still hurting, still draining me. As Adam is at work, I don’t have to sit here with a smile on my face, I don’t have to pretend that nothing is wrong, but oddly, I’m still sort of doing so. Even now, I can’t drop the act, it’s part of me, it is me now. That’s the problem when you’ve been ill this long, it’s actually really hard, to know where the real me starts, and the act takes over, or is it possible that I have been ill that long, that it no longer matters.

Please read my blog from 2 years ago today – 27/02/2014 – Hypochondria?

This is day 3 so I can now say with confidence that I have a mild dose of Bronchitis, the important but odd word there is “mild”, I’ve never had a mild dose in my life. I can only guess that my meds for my COPD is holding it at a low level, so I am just going to wait and see what happens, not point…..

There is always a price to pay

Posted on November 11, 2015 by livinginalimitedword

I’m not promising, but I have started on sorting out my posts from 2012, with the possibility, that they might be, the start of that book I have thought about, so many times. I am finding it really hard because I am continually want to rewrite every single one. Yes, staying to the heart of each post, but correcting my extremely bad grammar and adding in details, that back then, I didn’t consider important. My style of writing has changed so much, that I keep finding myself both embarrassed and disappointed, at exactly what each days scrawl held. It is quite an eye opener. One thing is for sure, if it ever gets completed, I will have no problem saying that they are not an exact copy of what is already available online. That alone, for the start of 2012, will without a doubt, be for me, a total blessing.

I am still finding myself both tired, and drained, after Mondays hospital visit. What exactly did the damage, as always, I don’t have the slightest idea, all I know, is that bed seems to have been a constant thought, stuck right in the front of my mind. I hate when this happens, as I know without a doubt that that means, this is going to be a long week. When you find yourself aware of every single minute that ticks past on the clock, what other outcome could there be. Almost ironically, I found myself yesterday morning coughing up phlegm. Despite my years of smoking, I have never had what is commonly known as a “smokers cough”. I don’t have the slightest idea how my lungs have cleared themselves of all the gunk, they are supposed to produce if you smoke. Either mine never produced it, or they somehow learned to absorb it. Mind you, I can’t say that it is something that I have worried about, who, after all, actually want’s to hack their lungs up daily. I’m not actually coughing repeatedly, as I said, it’s not something I do, it just seems to be one single cough, then my mouth is filled with crud, that I don’t want anywhere near me. What is unusual about today and yesterday is that those coughs are appearing several times an hour, with always the same result. On Monday, I was at the hospital, where if my lungs were going to fill with a lumpy mouse, would have been the day to do so. Tuesday morning, I wake with that unmistakable congestions, that just kept growing. Sods law, I guess.

Between my tiredness and my submerged lungs, you would think that I had more than an unfair kickback, from daring to leave the house for a handful of hours. My PRMS doesn’t agree with that conclusion, it has been throwing different symptoms, and issues at me, almost hourly. Both large and small spasms; in any place that it fancied at the time; sensations; from mild to body stopping, on into both the imaginative and basically mundane. When my PRMS decides that I have been pushing it, it always makes me pay for it. A perfect example actually appeared just as I was ready to go to bed last night. I had, like every evening, been sitting on the settee watching TV. Adam had, as he usually does on a Tuesday evening, spent most of it in the kitchen weightlifting. It has been a hobby of his since his teenage years. Despite his desire to be a muscle-bound monstrosity, like most people, he doesn’t have the time or the money to put in the dedication required. He has settled to just staying reasonably toned and with stronger biceps than most men. He had joined me for the final half hour before I went to bed and to be honest, life seemed perfectly normal, then I tried to stand up.

The initial push upwards and away from the soft cushions appeared fine, then I got to the point where momentum ends, and balance along with muscle memory takes over. Everything felt totally wrong. Yes, I was almost upright, but not properly. My feet were telling me that I was standing on a sponge, not the floor it expected at all. My ankles, that my weight was centered and that they were being pushed over, into directions that weren’t correct. My lower legs had fire spreading over my shins and my calf muscles, had knives being sunk, deeply into them. The back of my knees felt as though someone had managed to reach inside them and were twisting and pulling all the tendons and mashing all of the muscle structure. Yet, the three inches both above and below my knees were totally numb. All of that appeared in less than a second and there was nothing I could do but launch myself forwards towards my wheelchair. I had reached out to grab the arms, but as my left hand touched the rest, I knocked my thumb joint, once about out of its socket. None of this, was possible in silence, especially not when I cracked my shin, into the foot rests of my chair, and my hip off the armrest as I span myself round, to slump awkwardly onto the cushion. I may have made it to being seated, but there wasn’t the slightest chance of me going anywhere, at least not at that very second.

Adam had jumped to his feet and was standing in front of me, in less time than the whole thing took. He was desperate to do something to help, anything. I was too busy inside my head, trying to sort out what had just happened and what was happening then. The numbness was spreading, all the burning and stabbing had been replaced, but more than just numbness, as it felt like a thunder cloud. The numb feeling was the cloud, and electric shocks that were firing off all over the place within it, the lightning. Adam was desperately holding onto different parts of me, asking questions and trying to help, but I was too confused by it all, to make much sense. I knew he wanted to help, but I just wanted him to leave me alone and definitely not touch me. I knew I was snapping at him, it wasn’t meant to sound the way that it did, but I had to stop him from possibly making it worse, as he couldn’t possibly know what was happening inside my body. When you are tired, confused and in pain, it is hard to make sense and even harder to be considerate for others. My snipes and demands weren’t supposed to be that way, it was just how my body felt, appearing in my voice. When I wouldn’t let him touch me, he offered to push me to the bathroom and to help me do what was needed before bed. Again, I answered badly, but he left me at that moment to do whatever I needed to do by myself.

I know that Adams intentions were well meant, but he, like everyone else who isn’t in a wheelchair misses. My increasing agitation wasn’t all coming from how I felt, there was much more to it. I was sat in my chair, in a position that is firstly, like parts of most homes, difficult to maneuver in. If I had been on my feet, I would have just quietly moved both out of his reach and out of the room, without any sniping. He had me trapped, I couldn’t move at all, not even by an inch. It doesn’t matter how much you love someone; that sort of position; plus the invasion of personal space; especially when you are already distressed; is never going to bring the best out of any of us; add in everything else, and I hope the picture is clear. That, though, is a side issue, it was the everything else, I am supposed to be writing about. The last thing I said before Adam moved out of my way was, “I have to do this myself”, I kept on saying it all the way into the bathroom and in my head, the whole time I was there. When I emerged again, I was both calmer mentally and physically, I was also able to explain to Adam, what had been going on.

I didn’t have the slightest doubt, that it was the fatigue that sparked all the sensations. Sensations aren’t dangerous, it is rare that I have fallen because of sensations alone, especially when I am already aware of them all being heightened. If I let sensations stop me, I would do practically nothing. Yes, I could have let Adam take me to the bathroom and help me, but that wasn’t really in the long term going to help me at all. I am bitterly aware of the limited use that I make of my physical strength and remaining abilities. If I were to give in, stop using them and letting him do everything for me, well, the long-term result, would be a body that is less and less able, to do anything for itself. Sensations, don’t stop me from taking a couple of steps, from chair, to loo, or anywhere else. They can be painful, upsetting and unsettling, but they don’t do any real harm, I have to treat them that way, I have to carry on as though everything is normal, or I’m giving in.

If, on Monday, I had just spoken to that doctor on the phone, something that could have easily been done, as I didn’t go through any tests or examinations, I wouldn’t have been going through this or the hundreds of other things that have happened because of it. The medical profession is blinkered to the conditions they specialise in. I have been frequently asked by consultants what PRMS is, they don’t understand even the effects of MS and PRMS is a bigger and badder version. The majority of hospital visits aren’t necessary and people like me, aren’t just like everyone else, annoyed by wasting time, we’re actually made ill by it. Our healthcare systems don’t understand that, and neither do our specialist unless it’s within their specialty. Today is Wednesday, I don’t know when this will end, but I’m sure, the doctor I saw hasn’t even given me a seconds thought after I left.

Please read my blog from 2 years ago today – 11/11/2013 – A night of note

I seem to be in a run of bad evenings, I was fine all day yesterday during the day, other than when I went for my nap, lying down seemed as it often dose to trigger my lungs into complaining, but that’s nothing new. I often wonder how it is that pain can be slept off, I know it can, as I do it all the time, but you would…..

There is no name for it

Posted on November 3, 2015 by livinginalimitedword

It was just another evening, like any other, we were settled together on the settee, watching our normal Monday evenings programmes, but it wasn’t normal, I had a problem. For the last few days, I have been getting a lot of spasm in both my legs. It started with my left foot, as I mentioned a couple of days ago, then my right leg joined in. They have varied from mild to totally disabling, with no pattern or connections. Thanks to years of training, years when no one wanted to believe that I was really ill, I am incredibly good at covering up the majority of the effects. When people disbelieve what you are telling them, what they can see with their own eyes, even when any other idiot can see you are in genuine pain, they just roll those eyes and walked away. It was a reaction that I couldn’t deal with, as there was no reason for it. Ask anyone who really knows me, if there is one thing I hate, it is lies, so why would I lie in such a way, what did I have to gain from it, absolutely nothing. Trust me, there is nothing so painful as that, but I lived with it for years, and it turned me into a great actress. If they didn’t know it was happening, if I could cover it up, then life just went on as normal, all hidden and all ignored. In an odd way, I am now grateful to them, as they taught me something that I have found invaluable. For a totally different reason, I have always done my best to hide the worst of my illness, from Adam. He is both the greatest worrier, I have ever met, and the most loving and caring person, that I have ever met. Not long before I started on my Chemotherapy, which totally transformed my health for several years, I wasn’t in too great a condition, and I went through a several traumatic events. I saw how it affected him, and I swore that I wasn’t going to upset him, more than was totally unavoidable.

That though isn’t the full story, on top of how Adams reaction distressed me, there is something else, something that is far more difficult, and I never expected it. To call it embarrassment isn’t giving it a strong enough name. It is a feeling, that is much deeper and much more painful, almost as though being seen in distress, is something that damages my actual sole. I can bear the pain, but I can’t bear others seeing me in that state, and it doesn’t have to be pain, just any of the short-lived, violent reactions my body has, to what is happening to it. I would sooner spend time and energy, fighting to get off the floor, than to call for help, and no, it isn’t pride either. I don’t believe there is a name for it, well not one that I have found, as it’s so much more than any possible one I could apply. So what happened last night, didn’t leave me disappointed, or shamed, or mortified, it was closer to being destroyed by an atomic bomb.

Adam had gone ahead of me to the kitchen, it was coming up to 8 pm and time for my medications. My legs had been bad all day, I had been silently sitting there on the settee, shifting about a little, but trying to keep them relaxed and quiet, and mainly failing. As far as I could tell, Adam hadn’t picked up on my discomfort, he often does, but last night, he hadn’t said a word. When he left the room, I took the opportunity, to apply some force, to the worst areas, and gently massage a couple of others, before sitting on my wheelchair. I hadn’t managed to do a great job, partly because I didn’t have the time, and because it wasn’t only my legs that were causing me problems, my arms weren’t great either. I made my way slowly to join him, and I was soon sitting there using my nebulizer. It had taken me a little longer than usual to set the whole thing up as my right calf muscle was in a mid-range spasm. Despite sitting there applying my relaxation technique, the pain in my lower thigh suddenly went off the scale, them my ankle joined in. It was impossible to stay sitting, and as the pain shot downwards from the back of my knee to my ankle, I pulled myself up into so that I was leaning in the corner of the kitchen units, using them to cradle myself in and to take my weight. There was no hiding my pain, not only was I totally vertical when I should have been sitting, my face, and my voice had joined in with the more silent screaming inside. I couldn’t deal with the nebulizer as well, so I switched it off and stood there swaying back and forwards.

My left leg wouldn’t hold me, I fell back into my wheelchair and it was then that the pain in my ankle entered my foot. Adam shot around the end of the counter, into the main part of the kitchen, desperate to do something to help me. Then the pain got even worse. I was grasping the armrests of my chair so tightly, that I am surprised that I have a single nail left, they should have popped and snapped, with the pressure I was applying. I couldn’t even keep myself fully seated, my back was arched and I was twisting from side to side, in a vain hope of finding where the true trigger point was. By this point, my leg was outstretched, and my foot was pushed against the kick board, lifting me clear of the seat. Just as I have found in the past, one spasm triggers another, there were four main areas and as one eased, the next tightened again. Adam had dropped to his knees and was desperately trying to massage it away. For some reason, he seemed shocked, that he could feel the tension and tightness of each muscle he touched. He kept telling me that the muscles were solid and tendons pulled tight. As the pain shifted, he followed, it was so bad that I couldn’t sit still, or even keep my vocal cords, from expressing how it felt. I was talking to him and myself at the same time. Telling Adam where the pain was worst, and myself to relax, and most importantly, to breath. I am not exaggerating, it was the worst, spasm pain, I have ever had in a limb. He was working on my leg for a full five minutes, the whole time, I was fighting with the desire to grab a knife from the draw, and to somehow kill it. I felt totally under attack and there was nothing Adam or I could do. Then it broke. One by one, each area settled back to pain, rather than agony. Spasms don’t just go, they subside, leaving behind a shadow pain, as though you have been beaten up.

Earlier in the day, I had had an extreme attack in my left leg, nothing like that one, but bad enough that I was still able to feel it’s shadow. All I kept thinking was “Thank God, that it didn’t join in as well”. I sat there for a few minutes, just settling myself back to something close to normality. As I was about to go back to what I had been doing before it struck, I thanked Adam for his help and adding “I don’t like you seeing me like that”, he gently touched me on the shoulder and quietly said, “I know”, then he to went back to what he had been doing. There was really nothing else to be said, and I didn’t want anything said either. There is no reason on earth, why I should have felt as bad as I did, there was nothing I could have changed or done differently. There was nothing Adam could have done differently either. I was going to feel the way I felt regardless of anything either of us did, or anything anyone else might have done either, and I’m not talking about the pain in my legs.

This is part of my dread of the future. This is why I fear the point where these things will happen several times a day. Not just spasms, but the hoard of nightmare things my body can, and will do to me. I know that it is something I am going to have to get over, because that is my future. There isn’t any chance that life will continue as is, it is going to get worse. All those isolated events from the past thirty years, those events that have left my memory scared, will happen again, and again, and again, and without a doubt, there will be a few I haven’t even considered. All of it is going to happen in the sight of others. There will be no hiding, no acting or game playing that will hide it, and that to me is one of my nightmares. Don’t tell me to stop being stupid. Don’t tell me that it’s not my fault. Don’t tell me that it doesn’t matter. I KNOW. But I still HATE every second of it, and there is no escaping it. I have had people ask me what is the worst things about living with PRMS, well this is without a doubt one of them. It is a hard mental battle every time that it happens, and it has hardly even started.

Please read my blog from 2 years ago today – 03/11/2013 – Just a little control please

So many days just seem to bleed into another, nothing to define them from each other once you are no longer working. I woke this morning as I do quite often totally lost as to which day…..

Finding peace with pain

Posted on September 4, 2015 by livinginalimitedword

There was something I wrote the other day that twigged something in the back of me head. Oddly, well not really that odd for my brain, I don’t remember what it was or when I wrote it, I just know that I did. The back of my mind is often the safest place for information to lurk, as there it isn’t being interrupted or written over by the activity of daily life. I have often found that this happens, it is almost as though I write something and a light goes on, then it grabs the subject with a smile and the knowledge that it will be the subject for me to write about in the near future. I guess the oddest thing is, I am not aware of doing it at the time, but I always know it’s been logged and I always know that I will use it within a couple of weeks. I nearly did the other day then I found myself locked into something else and it dropped back into the pending file, occasionally being added to and padded out just a little. The subject of my lurking friend this time was pain and how I see and feel about it now. I had written something about the grade of pain I was in and how these days that level was what I saw and accepted as “normal”. Pain, any pain, isn’t normal nor is it something that any of us actually truly needs to be in, so how does someone thinking change to the point where living on Morphine and still in pain and somehow find that to be “normal”?

Clearly there is a large factor of getting used to things, but even that doesn’t feel right and in many respects, that in itself is wrong. No one should be allowed to get to that point where it’s just part of our lives and to believe that’s the way it is. It actually makes me a little angry not just with the medical profession, but with myself. By the time they actually got around to finding the correct diagnosis, I knew that normal painkillers just didn’t work for me at all. I was beyond the point where an aspirin was going to make me feel better. Twenty years of living with pain had taught me already that relaxation was the only thing in my armoury that helped. It didn’t get rid of it, but it made it easier to bear and allowed me to handle it and life. So when I received my diagnosis, instead of doing what I should have, demand that they did something about the pain I was in, I continued to deal with it myself. Yes, they gave me drugs that they hoped would modify my condition and over the first 3 years we worked through the spectrum available. They did nothing, something I was later told was pretty much expected as it is one of the problems with PRMS, it doesn’t react like any other form of MS to meds. All they could do was to treat me for my symptoms and that was the first time that my pain was actually tackled. We worked our way through a range of painkillers, but whatever they gave me, the effects were limited. Even now, when I am living on a high background level of Morphine, I frequently have to take another high dose to deal with the breakthrough. The pain I live with still isn’t truly under control. So there is the history, but those are the facts, not the answer to my question. “How did I get to seeing this as normal?”

The answer to that is actually quite complex, but I actually think there will be a large number of people who will relate to it. When you are fighting everyone and I do mean everyone, friends, families and doctors, to get them to believe and not dismiss the fact you know you are ill, your whole way of looking at life changes. Without meaning to, you set up several different mindsets that you switch between. The first is that they are right, there is nothing wrong with you and it is all in your head. If it’s in your head, well you just have to fight it, to change that perception and to get on with life. Surprise, surprise, that doesn’t work. The second, forms because you don’t want to piss off those around you. When they don’t believe you are ill, constantly showing or saying there is something wrong, get’s reactions of annoyance, disbelief and even direct anger. You learn to hide everything. You put on a performance that keeps their anger at bay, which in itself makes your life not only easier but less painful. The third, well I’ve mentioned this one before. You convince yourself that if there is nothing wrong with you, then the rest of the world must be feeling exactly as you do. Everyone must live with the exact same level of pain as you do, therefore you are just a total wimp and you have to toughen up and get on with it. The fourth is probably the most obvious, that you have to be totally mad and the only thing that you can do is shut up before you find yourself locked up somewhere. The final one is the one that got my diagnosis on it’s umpteenth attempt. I am ill and I have had enough of been called a liar, they are going to listen to me. I am sure there are probably others, but these are the strongest ones that I am aware of and they are the three that I switched around within for years.

All of them, except the final, have one thing in common, you are putting on an act, an act that you have been involved in for so long, that showing reality is almost impossible. Even now, I hide, I can’t help it. Even when I am on my own, I will feel a shot of pain that would have many screeching and doubling up. I remain almost silent and hardly moving at all. I have become conditioned to my illness and what is often seen as my being strong, is actually just me hiding again. I am so locked into it that I am sure that I have made my life harder as even doctors don’t always believe me when I tell them how bad it is. I know that happens, it has happened a lot despite my diagnosis. Being stoic is a double-edged sword, usually with both edges facing straight at you all of the time. Unusually though, there are times when being stoic actually does help with the pain. It is such a phycological game that I am playing that the game itself gives me strength, and that strength, allows me to be still and silent, to breath through the pain, rather than go to war with it.

20 years of playing games, of pretending and acting my way through a world that at the time not even I believed was real, has put me into an odd position. I have learned to bear pain, pain that has and is without a doubt getting worse in line with the progress of my PRMS. It appears that my bodies reaction to my munching myelin monster is to cause pain for every new munch. To be able to see pain as “normal” is actually an advantage to me, if I didn’t, I would be screaming and crying all the time. I believe, that I have to be able to call it “normal”, otherwise madness would be my next stop. For some reason, we seem to be programmed with a need for normality. I think we need to be mentally comfortable with our lives, otherwise we are living an abnormal life and where is the comfort in that. I guess that is why “normal” is a personal thing, but I would go further and say that “normal” is a desirable thing and without it, we are living in turmoil. I have become calm, accepting and totally at home with my pain. That doesn’t mean that I like it in any way, it just means that I am at peace with the life that I live and it shows. It has also played out to be an unexpected ace card. I am now in the position that when I tell my GP that my pain is beyond what I can deal with and that I want my background level of Morphine raised, he doesn’t argue, as he knows that it is really needed if I am actually asking.

I have heard it said that you can get used to anything. I suppose that my life is sort of the proof of that statement, but I think it is a statement that only touches the surface. We all have a mixed relationship with our health, but it’s our health and when you can’t cure it or change it, you have only one other choice left, to accept and embrace it. I guess that is one thing that isn’t a game or an act, it’s my reality.

Please read my blog from 2 years ago – 04/09/2013 – New life

Almost every time I think this is it, I have done everything needed and I can just go back to enjoying my PC, it points out something else that still needs to be rebuilt. The new drive was installed with ease as where window 7 and the Alienware Software, all of that was done yesterday afternoon and I spent right through until 9pm updating both……

It’s personal

Posted on July 23, 2015 by livinginalimitedword

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……