Above and beyond

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…..






The ticking of time

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

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

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

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

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


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

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

Who knows

I don’t know what has been up with me this week. I feel as though I am struggling, but why, or even, what specifically is making me feel that way, I’m not sure. It’s not as though anything that has happened, or any of the symptoms that I have been battling with, haven’t existed before. Yes, there has been a lot of times where I have felt buried beneath a mountain of them, but even that isn’t really new. For some reason that I can’t actually work out, I am struggling. I hate it when I can’t put a smile on my face that feels totally real. I hate having to put one on there, that feels even slightly fixed, but I have to. I know full well, that no one’s standing over me, telling me I’m a misery guts and to get my act together, other than me, but we are our hardest critics. I am the only person on this planet, who is pushing me to be happy, that’s stopping me from falling into bed and not just staying there, something I think I could do with ease. I don’t think, there has been one single evening, when Adam hasn’t double and triple checked, that I’m OK because, he knows full well, I’m not, and I’m just putting a face on. Just as there hasn’t been a single morning, where he hasn’t left me for work, without giving me one of his quizzical looks. I don’t answer his word or his looks with total truth because I don’t actually know what it is. Everything, just feels wrong, and what does that actually mean?

I know that this damned numbness is getting to me, but that isn’t enough, to make me feel or act the way I have been. Yes, I would dearly love to know exactly where my lower limbs are, rather than just this dead heaviness hanging below my knees, and to not dread sitting still for a second as the numbness will spread and grow, but numbness isn’t enough to make me fell overwhelmed. Nor is the pain that has snuck into its core and is at this second is living wrapped around my bones. It feels like the trigger as it is from the pain, the numbness emerges and spread in every direction. Yes, I have found the start point, it took me time to work it out as pain is just a normality, not an oddity. What starts the pain, well that’s still a mystery, to work that one out, would mean working out what causes PRMS. My hands now feel so swollen that even the fact that my rings are still spinning in circles is getting really annoying. I have lost count the number of times I have fixed them in the past hour, then found myself staring at what should be fat fingers in disbelief. Clearly my sensory system is working overdrive as if it isn’t numb, it is telling me it’s itchy or cold or worse still on fire. Every part of me is alive in some way or another that no one, other than me, would accept as normal.

Every morning this week has been the same, as it along with the last hour of every day, has been the time when I have felt most keenly that life is getting tough. I do everything that I can to do all that I need to, if not in tightly timed pockets as I once did, at least within a reasonable scale to the rest of the day. There hasn’t been one morning this week where that has been achieved, not one. Somehow, the hours have flown and as suddenly as my day started with the alarm, the hour of 1 pm, has arrived. Six hours were I don’t feel as though I have stopped for a second have passed and every day, I am behind, not finished and happily fetching my lunch. Yesterday, it took me right through to three o’clock, two whole hours, that I have no idea where they have gone. I know without a doubt, that I am typing slower as the pain in my hands has been a hindrance. I also know that my concentration has been thin and I frequently seem to be staring into space, but, is that all enough, I don’t think so.

My intestine has been tight and pressing into my diaphragm every day this week, and every day, which is far from normal, I have actually moved my bowels. I did increase the dose of Psyllium that is in each of my pancakes, as I had let it slip to so little, that it was having almost no effect. I know it always takes me a few days to settle to any change in dose, so the pain increase and the pressure increase is around what I expected. The odd bit is, this dose is exactly the amount that I took before and actually caused an improvement from the day I started on it, but I suppose this is my body and not having the same effect, isn’t that surprising. I know when our internal bodies are upset, that it can have a huge impact on everything else, but for some reason, I don’t believe this would cause this feeling of struggling all the time.

I am not the kind of person who would normally huff and puff at having to do anything, but I feel as though almost every action has a prelude of maybe not an audible one, but at least an internal one. Everything from taking a drink, to having to go to the loo, is just too much effort. It’s not as though I have lost my enthusiasm for life, that is still very much here, this is a physical. Every action requires energy and it’s that energy that is missing, not the one that want to do it, but the one that has to do it. I know that this sounds somewhat iffy, but it is almost as though all these newly heightened and extensive sensations are draining the energy I have. Is it possible that nerve activity can make you tired? I know they can psychologically affect us, but can they also physically use up energy? Is it possible, that the fact my legs are numb right now, that that very numbness takes energy to create it, rather than just as I thought just a mixed us signal? Feeling worn down, is very different from feeling as though you have nothing left to give. I don’t feel as though I have the energy to get through today, I will, but it will be a series of struggled through hours, rather than a day.

What our bodies do to us is a mystery to even our doctors, I am totally sure if I were to place this in front of my Dr and say, “what do you think?” the answer would be, “It’s possible”. If there is one thing that they say more than anything else to me, it is “It’s possible”, what kind of an answer is that? I know what kind of an answer it is, it’s non-committal. It’s like everything else they say about PRMS, “Who knows?” it’s as sure as anything, they don’t. If there is one thing about this illness that annoys me more than anything else, it is all these unknown factors. I know for a fact, that I am in a tiny group, just 5% of MS sufferers. I also know for a fact, that not once have I been asked to trial any drug to see if it helps or not. All I have been told throughout is that this, or that new drug, won’t work for me. How many PRMS patients have they tried it on? Where have they found enough of us, to be sure? In the now nearly 4 years of being on Twitter, I have only found 3 others. Thousands with MS, but only 3 with PRMS, I just can’t see where they are all hiding. To me, before you can cure something, you have to know everything about that condition as there is to know. If there is a single question that they have to answer with “It’s possible”, then they don’t know enough. It doesn’t matter what you own chronic condition is, but if your specialist has to answer just once, “It’s possible”, then question everything. To be fair, I doubt there is a single condition out there, where that phrase isn’t used at least once to every patient. But that kind of confirms my conclusions, unless every single one of us, are part of any ongoing research, their research is flawed.

I believe, that almost every single one of us has been more than a little frustrated, by the fact that no one knows what causes our conditions and that there is no cure. In time, you see past that point and accept that it is just the way it is. To be honest, I got past that point with ease as what annoyed and frustrated me, was that no one could even give me a forecast of what my future would be. I still find it hard that they don’t know even from my current condition what will happen next. That to me just isn’t right. Being told that your condition is unpredictable, is frustrating enough, but add in that they can’t even give you a complete list of possible symptoms, that is agreed upon, is beyond a joke. I honestly believe that I know more, about PRMS than, every single one of the doctors I have ever seen. For a lot of us, it has become a case of not out doctors healing us, or even helping us, we have to do it all ourselves, which makes a total joke out of the medical profession. Don’t get me wrong, I have had some wonderful help and care over the years. But when it comes to my MS, other than eventually getting my pain under control, and tinkering around the edges. It has been a case of a diagnosis, followed by little else.

So once more I am faced with a pile of questions and no one to help me find the answers. As today, I am inside struggling just as I have been all week. There is still a smile on my face, but inside, I just want to give up, disappear into my bed and sleep until next week. That way, I might actually feel awake for more than half an hour.

Please read my blog from 2 years ago today – 05/12/2013 – Giving in is good 

I guess we all like to think that our lives are in our control, at least I always thought mine was but now I have at last admitted to myself that I am have absolutely no control left over mine. I know that sounds…..

Mind set muddle

Sometimes I wake in the middle of the night, not aware of anything in particular other than I am awake. It wasn’t even midnight, but there I was at that second so totally awake, that I honestly felt as though I could get up and start my day. That, though, would have been a seriously bad idea. I lay there for a few minutes, wondering what I should do. Just close my eyes and go back to sleep seemed like the obvious one, but I had a distinct feeling that that was the wrong choice. Nothing else for it then, I was going to have to get out of bed and go on a reset mission. As I started to lift my head from the pillow pain shot through me, there was my reason, my stomach, well more correctly, my intestine was playing up. Although the Psyllium has made a huge difference, it wasn’t by any stretch of the imagination a cure. That intense pain that brings tears to my eyes and at times make me wish I could just curl up and die, still arrive with all the familiar explosive power, just not quite so often. I even get the odd spell where I can go two or three days without anything more than grumbling objections to food, but something was caught and was attempting to rip open my lower right-hand side. My GP says it is a really common place for people like me to experience pain. There is a tight corner at the point where your guts change from the small to the large intestine, pure bad design if you ask me, and who are these people like me? I’ve never met one.

Before I left the bedroom, I swallowed a Morphine pill and held onto my stomach tightly, before completing my move from horizontal, to sitting in my chair. I know it’s not going to burst open and yes, I also know that putting my hand tightly over the area, isn’t going to do anything helpful if it does, but it makes me feel better. I also know, that whatever is sat in that area causing all that pain, won’t be anywhere close leaving me for at least another 5 days, note the at least. So going to the loo wasn’t going to help me in any way either. I just needed some distraction and enough time to break that tablet down and to get it into my system. A trip through the darkened house, followed by a cigarette and then a pee, should have been just long enough. The problem with that was, that I had this odd disorientated feeling swishing around in my head. Almost as though I was drunk. I made it to the kitchen and carried out my plans with no difficulty, the problem for some reason was getting out of the kitchen. I crushed my right hand against the corner of the kitchen unit by the door and tore off the precious scab that was protecting my nearly repaired knuckle.

I don’t know what it is about knuckles, but they do two things with total expertise. One is to bleed and two is to create pain. The bleeding bit isn’t that much of a problem, suck hard then apply pressure, simple, not. Neither can happen without pain, pain that you wouldn’t believe from such a tiny area. Screaming pain and intensely focused stinging, all at the same time. It is a fortunate fact that pulling faces, is just about as good as screaming out loud, as so far, I hadn’t disturbed Adam. So there I was sat in the darkest point in the house, the hall, with blood pouring out of my hand and pulling faces that belonged to a three-year-old, with a similar injury. Turning that tight corner into the bathroom, was pure single handed skill and pure agony. I know that I got up looking for distraction, well I had found it. As they say, “be careful what you ask for.” With my hand cleaned and daubed with Savlon, I headed back to bed, wondering with every push on the wheel, if I could be totally sure that it wasn’t going to bleed again. Cream carpets and sheets, don’t require or suit, blood spatter.

I didn’t wake again until the alarm sounded. It seemed somehow distant and not really part of my life when it did rouse me. I still had that odd swirling sensation that had been there earlier. Unlike when I left the bedroom during the night, morning meant that not just a dressing gown was required. I had a huge struggle getting my pyjamas and socks on. I was so disconnected from life that I found myself fighting every single movement that had to be made. I wasn’t being helped either by the fact that my Morphine must have worn off hours ago and this was clearly one of those mornings, where pain was a component. I can’t remember when I last had such a confusing start to my day. Trousers, legs and socks all seemed to be knotted into a mess I couldn’t unwind. Mind you, that wasn’t assisted by the fact I had parked up with a wheel placed over them. I just wanted to lie down again and hide from it all, but I couldn’t. I had that eternal annoying voice telling me that it was time to get up and I had no choice in the matter, it was that time of day. Over forty years since I last lived with her, and my Mother is still nagging me.

I feel so odd today, I don’t know what is causing it, or even where it is centred. It is one of those all-encompassing sensations, that for some reason, is driving me into wanting to eat. I already have, it didn’t help. Which hasn’t stopped my brain from screaming for food over and over? I don’t even know where in my mind that the idea of food fixing me is coming from, but that is what it is telling me. Eat and feel better. I’ve eaten, breakfast plus 3 bite size flapjacks, but I am yearning for more. Either that or to go back to bed, despite the fact I don’t think I would head into a deep sleep, just a dose. I hate feeling like this and clearly that is why I am coming up with stupid answers to it. I feel nauseous, tired, light-headed, I’d say I feel almost poisoned if I didn’t know better. I’ve never been poisoned so how does it feel? Probably nothing like this, but that is the description my mind has chosen. Years ago, if I had felt like this, I would have just told myself to shake it off and get on and do things. I would have done some cleaning or something to keep myself physically busy. I miss physically busy. To many that must sound like an odd thing to miss, but you quite honestly miss the oddest things as time ticks by. Right now, I wouldn’t miss the pain in my gut. It’s just getting worse, despite the fact, that at the start of the last paragraph, I took more Morphine.

I guess that today is going to be a tough and odd one, not just because I am clearly going to be in pain for the whole of it, but because of the mental mist of illness. You can’t fight these odd feeling, after last night, I’m not going seeking distraction, it will only land up with food and probably more pain. Maybe that’s why I am seeking food, as it’s the only reason I have to leave this room, unless I need the loo, and I don’t. It has been one of the odd side-effects of being in my chair. I have this desire to do. What? Who knows? I just want to do something. The freedom of feeling safe again has brought that need with it. It’s a really stupid need as well, my body would collapse within minutes, it struggles as it is just to get the end of the day. But I want to do, to be busy in a different way other than sitting here typing. I’ve thought about trying some light housework, but despite the desire, by the time I had fetched the cleaning products, I wouldn’t have the energy to do any work. There are never real answers any longer, just more questions and more madness that just trying to apply logic to, is enough to exhaust anyone. I think it is time for me to stop, to use my relaxation system and see if I can rid myself of at least the tension that all this contradiction is causing. Relax, push away the frustration of just being alive. Rest for a while as I hit the reset button and start over again, with a hopefully a different mindset.

Please read my blog from 2 years ago today – 04/10/2013 – Sorting out life but when asleep

I woke this morning to find once more that I can find no real improvement on the last week, this, whatever it is really had a hold on me and isn’t in any hurry to let go. The pain I have had now for over a week in the back of my left lung is still there, not worse but just as it has…..

Thinking differently

Cooking, that was my afternoon yesterday. I spent a whole four hours making Psyllium pancakes. Well, to be fair it did spend two hours doing nothing other than sitting quietly growing and growing. I just wish the yeast did something other than just make it easier to cook, looking at the finished article and they are as flat as a pancake ever was, no depth or lightness at all. On the upside the pain if I stick to my normal diet and don’t eat too much, has been dramatically changed, not gone, just changed. I still get pain daily, it has never gone away, but it is mainly at a reduced level. I can only guess at this, but I think the slimy film it supplies, make things move more easily, so the dead nerves that are all over the place, are no longer totally preventing the contents from moving as they did before. The few good nerves that are still working can actually do the job they should, they just needed this small amount of help. It is though still the pain second highest on my wish list of pains I want rid of. I have been for the last three weeks eating just one pancake per day without having to try and disguise it with something else, since I started not adding flour to the mix. I don’t understand how that changed the taste, but suddenly Psyllium has become edible. As I said yesterday, life really isn’t allowed to be easy and there is a price to pay for everything.Those four hours snatched from my day, even though I spent one hour asleep as it slowly rose and the rest was spent sitting on my perching stool, had left me totally shattered. Even this morning, I am still feeling the effects as my body is aching from the unavoidable exercise that it just isn’t used to. It also shows up another one of those things no one tells you when you are diagnosed with a chronic illness, all solutions to your health don’t come in convenient tablet form.

I don’ know why, but once I really knew what was wrong with me and what it was going to do, I had this image of an eventual future of living off medication. I saw my future spent sat next to a growing table full of tablet containers. That my life was simply going to end with me connected to a dip that fed my cocktail of drugs into me as I couldn’t swallow them, but everything I saw was drugs and more drugs. I suppose part of that comes down to that myth that doctors can cure everything, and what they can’t they can treat. Being a post world war two baby, also meant that I grow up in an age where it didn’t seem possible that this brave new world of technology and high tech medicines could possibly be turning itself backwards to the world of herbal and potions. I somehow totally missed the beginning of the journey backwards and when I was aware of it, I didn’t believe in it at all. Science was always going to have a better answer than anything that grew in a field. This thing called Psyllium was even when the consultant spoke about in glowing colours and was promising me was the cure, sounded like hocus pocus. I am going to be honest here, and say that if anyone other than that consultant had told me about this stuff, I wouldn’t have believed them. Yet, there was a surgeon telling me to eat some herbal gunk and to throw out all the meds my doctor had given me to help my bowels work. If I hadn’t believed him, I wouldn’t have spent three months experimenting on finding a way of making the 200% totally inedible, edible.

So OK I don’t go to the loo every day, but I am going to the loo, which is a huge relief and result. I used to go once a fortnight and went through more pain that I thought possible. Now it is once a week and occasionally a couple of times in the same week. I still go through huge amounts of pain two or three days a week, especially in the hours leading up to my making a visit to the loo. Worse still to that is it quite often wrecks the last 4 hours of sleep, leaving me awake in bed, unable to sleep and not at the point where I can go to the loo. To many, that just wouldn’t be acceptable, but when you know that life without Psyllium found me spending hours in pain so bad that I broke into sweats and had my finger hovering over the nine button on my phone at least twice a week. This is an amazing turnaround. Going forward, if a consultant tells me to try any herbal solution, I will and I will do it with far more hope and belief than I did when I first realised that this man of science was seriously telling me the answer was in a plant.

The consultant apologized that he didn’t have the answer to the pain, he didn’t lie to me, he said that was for me to find the solution. He made suggestions, from things his patients had said worked for them, but he couldn’t truly give me any hope. Oddly, when you live with pain, you sort of learning to accept that pain is part of your life and there is no answer. Morphine has been a total godsend to me, but no matter how bad the pain, that breaks through my daily doses, I still have a reluctance to taking more. Especially for pain from my stomach. As yet, I haven’t learned to tell the difference between sudden painful short bouts and their big brothers who last hour after hour. I find myself sitting here all to often, saying over and over to myself, it will pass soon, just wait a little longer. Mind you I do that where ever the pain is coming from, another ten minutes and it will be over, just wait. The ones that usually works the best, are the ones that are muttered over and over until I go to sleep. I don’t know how I would cope without that escape into sleep, I know I am so lucky that my body has at least taken this root out of life. Without it, I doubt that I would still be here and if I were, I would have lost every strain of sanity that exists.

So now I am on the countdown to seeing my next consultant, this one for my COPD and all it is managing to do to me. Adam and sat the other evening and were talking about something that brought up the topic of my exacerbation that triggered this appointment. For the first time in a long time, I heard and saw anger in Adam over my treatment. Clearly what happened back in June has been playing on his mind. He came out suddenly with a declaration that if I was ever that ill again, he wasn’t going to give a damn what the doctor said, if he didn’t come out to actually see me, something that didn’t happen once, he will be calling an ambulance. Even when I was ill, I wasn’t happy about not being seen, as I like Adam was sure that I needed oxygen, not just antibiotics and steroids both prescribed separately and both over the phone. I had had pneumonia before and I wasn’t as ill then as I was this time, then I was rushed into hospital and spent three days with a drip for the drugs and an oxygen mask permanently attached.

I really don’t seem to be able to win recently with the combination of my illnesses. I have noticed a pattern with the pain in my chest that makes me without even knowing I am doing it go into shallow breathings. If my stomach is painful, it clearly kicks off pain in my chest, but if I am run down with my MS, as in fatigued, it also seems to make breathing more difficult and I slowly slip into shallow breaths. During the day, I catch it, I have learned that I can actually make the upper part of my chest expand a little further without causing more pain in my diaphragm, but at night, I have no control. Adam is now picking up when I have woken with that headache and buzzing in my head, but he is now also picking up on the more subtle effects. More and more he is that bit reluctant to leave me and is home at lunchtime to be sure I am OK. Yesterday was a good example of both and one of a handful of recent occasions that he has admitted that he wasn’t happy with my appearance in the morning. At least we have less than two weeks to wait for the answers as to what the consultant will think and do. I don’t know why, but I half expect it will just be in this case, more drugs.

Please read my blog from 2 years ago – 01/09/2013 – The right thing

As yesterday passed I didn’t just get tireder, I started to totally crash. I had had a nap in the morning, something I don’t normally do, but I still equally need to sleep in the afternoon and I did, for 3hrs once more. I have to say that I did wake up feeling a lot more refreshed than……