Words to live with

It’s been a tough week, I’ve spent all of it locked in a battle, which, although I don’t intend it to get the better of me, it is wearing me down. Those who know me well enough will have spotted, that something was up. I too have noted that I have been clearly picking subjects, that said little about the now, this very minute. It’s not that I am trying to deny that it’s happening, it’s just I know how tiresome it gets when someone goes on and on, about the same single thing, especially when it doesn’t really change. That’s what makes it such a battle, it doesn’t matter what I do, I am in constant pain from my stomach. See, I told you, it boring. So I’m not going to go on about it today either, it’s more an update, a note to say that it’s now three weeks, since I last had a straight six hours, without the level of pain, that makes me reach out for the Morphine. Nor, have I had a single day, where sleep hasn’t been on my mind, far more than I remember before, two things that I am now convinced are locked together. Tomorrow is the start of week four, I just hope that if I need to make an update, it will be to say, that at last, it’s settling down again.

I’m starting to truly hate that word “chronic”. It seems to have snuck its way into every corner of my life, almost everything seems to be “chronic”. The only good thing, the things that 14 years ago at diagnosis, were then counted as “chronic”, mainly don’t bother me at all now. I’m not saying they are gone, they just don’t bother me. That’s why I say that it’s a sneaky word. What it does, is attach itself to something, then it starts looking for the next step above. It’s not even bothered if it’s the same symptom or something totally different, it see’s it, and it want’s it and just like most petulant children, what it want’s, it normally gets. Each step it takes, well it forgets about the one before, because it’s got a new toy, that’s bigger, brighter and more painful or annoying than the last. I’m never been sure which is worse, pain or annoying. In some ways, I’d actually say annoying is wins that match. Painful, well it can be treated with meds, relaxation and sleep. Annoying, just eats away at you, hour, after hour, after annoying hour. Right now, on the annoying scale, the winner has to be my legs. They died a couple of weeks ago now. Well, I think it’s a couple of weeks, that’s the problem with annoying, they appear and become part of our lives. Days, weeks, or even months pass without count, they just are, before you know it, it becomes part of your life. As I said, I am sure that those things that were “chronic” 14 years ago are still there. It’s just, that they are so much part of me, that I no longer know they are there, or that they are wrong.

We have all heard the classic story of the person who on visiting their doctors, forget to mention, this or that. Well, that isn’t just bad memory. It’s because what some might see as wrong and needing to be fixed, are just so much part of us, that when the doctor asks “How have things been?”, we say “Fine”. It’s not habit or forgetfulness, it’s because this horror story called our lives, is “fine” and “normal”, to us, it is us. If forced, I don’t think there is a single inch of my body, that I couldn’t find something bad to say about, but to me, it “normal”. We aren’t as dotty and as daft, as some think us, we just have a totally different way now of measuring our world. Think about it, how many seconds after putting on your make up, or a hat does it take for you to forget that it’s even there? Well, it’s the same thing, just on a bigger more permanent scale. I have heard so many people tell me that they will never get used to this or that, ask them even just a few days later and there is this moments where you can see in their eyes, that they are having to think. They have become used to it, it has seamlessly slotted itself into their lives.
Not being able to feel anything other than numbness in the majority of my legs, is a normal everyday thing. “Annoying”, but “normal”. Most of the time, unless I am drawn to it for some reason, like it being so intense that it if feels like it has frozen its way right through to my bone, I almost forget about it. It hasn’t gone anywhere, it’s just in a quieter spell, or I am deeply distracted enough for it not to dominate.

It has been such a long time now since I felt what most would call “normal” that I honestly, don’t think I can even remember it. I don’t actually think, I can even imagine it any longer. My body, is just my body, and the things that it does to drive me up the wall, are not exactly expected, as I honestly don’t know what it will do next, but I do know it will do something. Every movement I make has some sort of price attached. Messages from my nervous system are so screwed up and so sensitive, that anything, even just a single breath, isn’t just about air, it is about, what every nerve involved, thinks it feels. A breath doesn’t start and end with the pain from my diaphragm, or intercostal muscles. There are thousands of nerves in that process, from the ones the air travels over in my nose, throat and trachea, to those on my skin that should, just feel material on skin, but often finds sandpaper, fire, ice, and numbness right next door to each other or at the same time. My nerves have been turned up to 11 for so long, that I couldn’t even tell you what 10 feels like, all I know is I often wish I could feel nothing, oddly, though, that something I equally fear.

I doubt in reality that there is anything that my body can do, that it hasn’t already done. Those things I often say are new, aren’t really, they’re just a variation on the theme, but that what “chronic” health is, a variation on good health. Admittedly, it’s a rather unpleasant variation, but it’s one you get used to, no matter how unpleasant it gets. We all learn to live with whatever life throws at us, which is very different from liking it, but we live with it, what other choice do we have. In many ways, I suppose not being able to remember “normal” is a blessing and the reason that the longer we are ill, the less we bother to tell people that this or that is causing us a problem. We’re fine, because what else is there? To annoy everyone by being honest, to make ourselves depressed by dwelling on what can’t be changed? I don’t remember taking the decision that I was “fine”, but I do remember that I decided that I had to accept this odd life as “my normal”, as otherwise, I was simply going to make my health worse. I doubt if there had been a film of my life made as it happened and if you sat and viewed it, that many would reach this point in my life and find anything “normal” about any of it. To stay sain, I had to see it as “my normal”, so it only makes sense that I see my health in just the same way.

Please read my blog from 2 years ago today – 12/12/2013 – Awareness

The last few afternoons I have been dealing with a common problem with a twist, “Google madness!”. You know when you set out to do something incredibly easy on-line to only find out it is a total nightmare! It isn’t what…..



Joining the dots

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

There is always a price to pay

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…..

Finding peace with pain

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……

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……