Why would I want to?

Posted on March 1, 2016 by livinginalimitedword

I hate days that start with “I’m waiting”, but that’s exactly how yesterday started, waiting for the doctor to call. Actually, if I am being honest, it wasn’t quite the start of the day. At the start of the day, I found myself in excruciating pain. It was terrible, but I knew that for once, it was a productive pain as within half an hour of getting up, I was heading to the loo as fast as I could. Unlike last week, firstly I wasn’t having to resort to a suppository and secondly, I managed to pass a really good amount. Somewhere in my stupid little head, I found a logic, a logic that said that maybe, that was what had been, behind the worst of the pain. It was the same logic, that stopped me picking up the phone earlier, despite the fact I had had 3 hours of pain, before getting out of bed. Yes, I know that reading that makes no sense what so ever, but you have to remember one thing. I am the owner of a human brain, as such, I will try to kid myself, over and over every few seconds, for as long as it takes, that’s the problem with being human, we’re basically stupid. So now I am waiting, again.

The longer that you are ill, the more that it appears, we become stupid. Personally, I think it’s because we quite simply have had enough to deal, with when it comes to our everyday health. When something else comes along, well, the stupid factor comes into play. For me, the stupid factor is easy to find and even easier to name, the hospital, or rather, having to go to the hospital. There isn’t one aspect of that situation, that isn’t problematic, for me. Yes, I know that sounds stupid, but it’s just the way it is. From the very moment, my GP says to me, that he is referring me to this clinic or that one, it starts. All these barriers start to appear, barriers that cause me stress and it just grows and grows. The first in line is asking Adam to take more time off his work, to accompany me there. It doesn’t matter that he is entitled to take time off to go with me, he stresses, quite rightly, about taking too much time off. So much so, that it isn’t unusual for him to actually either take it as a holiday or without asking or being told, he will make the time up. It doesn’t matter what the law says, or the fact that he himself works for the NHS, he worries about the whole thing. As an ex-manager, I fully understand his worries. I have in the past myself had to manage staff taking time off for such things, and despite the law is technically on their side, they can still be given official warnings about their attendance. The idea that I might be the reason, he might be put in that position, is only my first hurdle, but it’s a big one. Yet, I have to have him with me, as the very idea of heading out on my own terrifies me.

The stress of having to deal with all those people, starts long before the Ambulance arrives, it starts the second, I know it’s going to happen. Take me out of my comfort zone, and I can’t cope. I quickly start to feel agitated. The outside world is a daunting place to be when, your are forced, to sit in a wheelchair that you have no control over. That tiny element, of being out of control of where I am going, is hard to deal with alone. Add in that people want to talk to me, and I have to answer them, freaks me out. I can talk without stress to people I know. To my family, my doctor and so on, but strangers don’t always allow for my stuttering, my inability to find words and you never know which sort you will meet, that knowledge alone, makes it even harder. I get more and more agitated the longer I am away from the house, as I know it’s only a matter of time before I have to speak to someone.

Just getting ready to go, is one of the things that has always told me, that even if we lived in a ground floor flat, I still wouldn’t be able to go out. Every day, I sort of dress. Pyjamas and a dressing gown, getting dressed to go out is a totally different ball game. By the time I have worked my way through the whole process of clothes, make-up and hair, all before 8 am, I quite simply want to go back to my bed. Even when on my last appointment, I trimmed it all down, I didn’t feel any better. Being dressed, making myself look that touch more human than normal is enough, to exhaust me, so no, I don’t have the energy for the rest of the day, before it even arrives. Even without the stress of going to the hospital, I know without a doubt, if we lived in a ground floor flat, I would still never leave the house.

The Ambulance service do their best, but they too are part of the problem. All appointments are made for the morning, so you have a window from 8 am on, that they will pick you up. Often, they actually arrive, later than your appointment was made for. Granted, you are always seen, but for me to be late by even a second, I find unacceptable and always have. My arriving half an hour late for an appointment is mortifying. Then there is the stair-climber. The contraption from hell, that bumps you around like an out of control fairground ride. I defy anyone, not to feel sick after one flight of stairs, never mind six. I hate it with a passion, but it is the only way out of and back into my home. Occasionally, the ambulance doesn’t have one. Then you’re held up even more, as they have to call a second crew, so they have the safety standard of four people to carry me. I already have the experience of them not being able to find one ambulance to take me home at all, we have then had to sit waiting. Not just for an hour or so, but hours, the latest I have been brought home, was just after 7 pm. The stress wrapped up in all of that, is enormous, and I haven’t even mentioned the actual appointment.

Any appointment with a consultant is because something is wrong. You don’t just pop by for a chat, there is always a reason, even if it’s a return visit. The core of stress is always going to be there, and you don’t have the slightest idea, if you’re leaving with more trips for tests and so on, or immediately with a new condition and new medications, or waiting for an operation. One way or another, something will be there at the end of that day, even if you leave with no conclusion, you’re leaving with the problem you entered with, and that believe me, that, can be far worse. Whatever the conclusion, you leave that room still faced with the process of going home, followed by the process of trying to return to normal, something that doesn’t happen quickly. This is probably the biggest thing that says to me, no matter where we lived, I still wouldn’t be able to go out. That single day, even if it runs totally smoothly, which occasionally it does, it will still take me days to recover. Going out, just isn’t worth it. Going out to the hospital, is unavoidable, and often lands up feeling like some kind of punishment for being ill.

While I was writing, the phone rang. I am waiting, as I expected, my GP is sending once again, back to the hospital, so I’m waiting, for yet another appointment. My GP is putting me onto some stronger antispasmodics, to take on the days when things are bad, to see if they make any difference. So now, I’m waiting for one prescription and three appointments. Two later this month, and another, well who know when I just have to wait and see, when it arrives. Waiting seems to be another symptom of chronic illness, as at times, it’s all we ever seem to do.

Please read my blog from 2 years ago today – 01/03/2014 – On my own two feet

I remember watching an interview with some celebrity, forgive me but well names aren’t exactly my strong point, not just now but forever, her sister had been ill for years and no one had the slightest idea what was wrong with her, despite endless tests. As her health had deteriorated she had expressed an interest in going to India and an opportunity arose for them both to go there. The celeb was there……

The first, or the last?

Posted on January 9, 2016 by livinginalimitedword

My new tablets arrived yesterday evening, so I can tell you their name, at last, Duloxetine. I had done as I always do, read nothing that came with it, other than the starting dose, just to check I had, at least, got that fixed in my head. My first weeks dose is low, as I am taking just a 30 mg tablet, along with 10 ml of my Amitryptiline, a 50/50 dose to help with the expected withdrawal symptoms. I am more than aware of them, as my forgetfulness, that has lead to Adam being in charge of my meds, meant that I have felt them several times in the past. I admit, even though I am still to take a lowered dose, I was still truly concerned, of what might happen, far more than I was about the new tablet. Ask anyone, who has been as ill as I am, for as long as I have, and you will get the same story, life is one long round of trying different drugs. Personally, I can’t think of a single one that I have ever had an issue with, other than the seen as “minor side effect” that came with my Amitryptiline, an incredibly dry mouth. If the new tablet works only as well as the Amitryptiline, but, doesn’t give me a dry mouth, I will be happy. If it works better, I will be delighted.

I have to admit, I was truly hesitant at 8 pm when we headed into the kitchen so I could use my nebulizer, all my inhalers and finally swallow my array of tablets. If there is one thing I need, it’s my sleep, the thought of a disturbed night was filling me with dread, but like a lot of things in life, you just have to get on with it. By the point that they all should have kicked in, I felt nothing different in any way, and I started to relax, maybe, it wasn’t going to be as bad as I thought. Although, to be fair, withdrawal symptoms don’t normally appear for a couple of hours past the medication due time. When I stood up at 9 pm to go to bed, I suddenly realised that there was something wrong, I was totally unsteady on my feet and I felt drugged, spaced out and totally wired. Sitting in my wheelchair has rarely been more welcome, as there wasn’t the slightest doubt in my head, that I wouldn’t have made it to even the living room door, on my feet. I can’t think of anything I could compare it too, as not even the old fashioned premeds, you once got before an operation or the sleeping pills, I had years ago, ever made me feel that way. I was giddy, misty minded and, well, drugged. It was just how I thought, that Morphine would make me feel before I actually took it for the first time, when, I felt nothing. It was more than unpleasant, it was actually totally unsettling and bizarre. I didn’t say anything to Adam, as I knew that he would just worry, all I had to do was act normal, and get to my bed. Why is it when you want to act normal, you feel as though, you are doing anything but?

Once I had said good night to Adam, I tried to put in my ear plugs. I knew without a doubt that I had made a mess of it, but I felt so weird, that I just didn’t care. I got into bed and laid down, hoping that sleep would take over in seconds. It wasn’t until I was lying down that I became aware of feeling as though every sense in my body was heightened and more alive. I almost tingled with electricity, it wasn’t unpleasant, like the tingling caused by my MS, it was more an invigorating sensation, and not what I was looking for at that time of night. I took my mind off it by working my way through my relaxation system, which to my surprise, worked at super fast speed. All my muscles seemed incredibly relaxed before I had even started, which didn’t exactly go with how I was feeling, as I said it was weird. I have to admit that it wasn’t totally unpleasant, it was more unsettling if you know what I mean. Then slowly, everything started to shut down, as though I was diminishing in size, until, I was just my brain and my body didn’t exist, sleep followed. I can’t stress how unusual the whole thing was, I’ve never felt anything quite like it. The closest, well I know my memory isn’t the best these days, and I would need to stretch it back to the 70’s. when I like many teenagers, dabbled with acid. It was along the lines as a refined version of how that felt, except I slept.

I did wake during the night, just once, to go to the bathroom, which should have been easy and would have been, if not for the drug. As I was putting on my dressing gown, I fell over, luckily I landed on the bed, but as it had taken a huge amount of effort to stand in the first place, I wasn’t that amused. It took as much effort to find my feet again and to get into my chair. In my head, there was a thought spinning around, as to whether I should wake Adam to help me, or not. What if I fell in the bathroom? That wouldn’t be funny at all, or in the kitchen, when I eventually got there? Yes, I did still go for a cigarette, something just have to be done, no matter how you feel. Mind you, I didn’t smoke all of it as I couldn’t stop yawning and I was still feeling terrible. The pack had said it was a slow release drug, and it was, all this happened at 4 am. I didn’t wake Adam, I managed perfectly well by myself, but I was truly glad to be back in my bed. I lay there for a while trying to work out, if I was going to try this whole thing again that night, or just write it off as a truly bad idea. I didn’t make a decision then, as once more, I diminished, then vanished.

My head is much clearer this morning, but still not right. How do I feel about this drug, well it was only one night, that isn’t long enough to test anything and as it is night, not morning, does it matter, not really. Yes, I am going to take it again tonight, hopefully, it won’t be so dramatic. I clearly still have quite a bit of it in my system this morning, hopefully, my body will adjust over the hours and be ready for another dose tonight. I have to give it a decent shot, at least, all the way through this weekend, especially, as Adam is here to help me should I need it at any point, which I doubt that I will. No, it hasn’t stopped me feeling pigheaded. If I feel as bad on Monday morning, well I can talk to my Doctor and see what he says. Right now, I don’t have the slightest idea if it is doing what it is meant to or not, I won’t know that until, I have been on the full dose for a few days, so that answer, is at least 10 days away. On the good side, just cutting my Amitryptiline in half, has more than halved the dryness in my mouth. For someone who hasn’t known moister without stimulating it with food or drink, for 14 years, this alone is an amazing event. So much so, that if the two drugs turn out to be exactly the same at pain control, as long as I don’t have to spend my life feeling drugged, I will go with the Duloxetine.

You have to allow every new drug a chance, it’s all too easy to just take something once and dismiss it, Some drugs, especially those that fall into the category of antidepressants, even when not being used for that purpose, take time to get into your system, and time to work. This is just the first tablet, I can’t really judge anything on that basis, time will tell.

Please read my blog from 2 years ago today – 09/01/2014 – A choice over Morphine

The year is only 9 days old and I have already reached the point where I wouldn’t mind sleeping the rest of it through. Until today I have been doing fine and was managing to stay up to 9 pm each evening…..

Getting it right

Posted on January 2, 2016 by livinginalimitedword

I lost my right leg last night, we were just watching TV, and the whole thing suddenly died from knee to toes. Compared to last week when I wasn’t able to find a single of part of me that felt normal, I’m not complaining. What made me mention it, was the fact it was to totally numb and went suddenly. I’m used to it normally going slowly from a single expanding spot, but last night, it was fine one second, the next it was gone. I guess it could say it has learnt a new trick, in time for the New Year. In general, getting that deep nights sleep did make a huge difference and it is a trick that I am going to hold onto, just in case, it’s needed again. I wasn’t doing it totally in the blind, as the day before I had taken a booster during the day and I noted then, that the sensations eased off, they didn’t stop, but they did turn down in intensity. I am wondering if part of the problem, is that my painkillers aren’t holding everything as quiet, as they have up to date. It has been quite a while since they were last increased and I know better than most, if you are constantly fighting, even with low-level pain, you get tired. It doesn’t just wear you down during the day, but it also means that you don’t sleep as deeply, which isn’t something you can’t really measure, other than by how you feel during the day. Get tired, which I have been now for ages, and everything else steps up, making life miserable. It might well be time to ask for a 10mg increase on the slow release Morphine, as the last time I increased it by that amount, life changed totally for me.

I don’t know if you would call it a healthy respect, or just a plain reluctance, but I never race into increasing or changing my medications in any way. I know that some people just take and take, with only one thought, to try and make their bodies feet just as it did before their condition began. That to me is not the best route. If I had been doing that since I was diagnosed, god knows how many drugs, I would be taking now. I, without discussing it with anyone, have cut out and ditched about half the drugs that all my different Doctors have prescribed for me, at different times. Every drug I have ever been given, I have tested, not just when I first started them, but at odd occasions from then on. If I didn’t feel it was doing what I expected, I would stop it for a while and wait and see exactly what happened. This is not something, I recommend that anyone does, I have chosen carefully the drugs I have removed, none has been life essential, nor condition altering, just symptom suppressing. I noticed, that every time I complained to my doctor that I wasn’t getting my expected result from taking them, all they did was up the dose. The first one that I stopped was one that was supposed to keep me awake. After about three years of taking them, I suddenly found that I could take it, and go to sleep within the hour. I simply wasn’t happy about adding yet more, of what in effect was “speed” into my system I stopped it and absolutely nothing changed. I didn’t feel different in any way, so I could see no point, in taking their ever increasing dose, when the one I was on, far higher than the insert suggested, did nothing. It has prompted me to test others as well over the years. At a guess, I would say that I have halved the medications they would have otherwise continued to prescribe, they weren’t doing me any good and were just costing the NHS money.

I know that my body is a mess, and I can’t see how, it helps to fill me with chemicals that do nothing or little. The drugs I am on now, are drugs that I need and work, but I still have a reluctance to increase anything, before I reach the point, when there is no other answer. Chemicals can help, but there is no way, that there isn’t a price to pay at some point. Right now, my body is tolerating them, appreciating them and working with them, which is just how, it should be. I know that on the scale of things, the level of Morphine that I am on isn’t that high, but, I don’t know how many years I still have to go, or how or what my body will throw at me. Addiction doesn’t come into it the equation at all. Why would it? I’m in the closing phases of my life, if I get addicted to anything, well it’s not going to matter, as there’s only one way that I will ever come off it. All the medical profession can do for me, is to keep my pain levels at bay. I know they can’t take it away, and that I will never, not even for a minute, be totally free of it. As long as it’s at a level where I can live with it, then that’s all I ask.

Chronic illness is all about balance. Activity, enjoyment, drugs, sleep and hope. You have to have them all, and you have to decide for yourself, how you want that balance to sit. It’s personal, not medical, and that’s something a lot of people forget. Our doctors are there to help us, look after our bodies, not to control them. It doesn’t matter what the medical books say, or those people who read them, think they say, it’s up to us, to interpret it all including how it all makes us feel and to control our health. Personally, as I’ve said before, I listen to my body, I know it and I know quite quickly what it likes and what it doesn’t. So far, I don’t think I have done too badly in actually living with PRMS, COPD, Fibro and a list of many other more minor conditions. This is the start of year 15 post diagnosis of my PRMS, 15 years ago, I didn’t think, because of what my doctors said, that I would be here today, yet here I am. This the start of year 3 post diagnosis of my COPD, 7 more to go, if the doctor is right, but I still think, that it’s all up to me. I’ll keep listening to all and anything that might help me, but it’s all up to me.

Please read my blog from 2 year ago today – 02/01/2014 – Glorious isolation

In Scotland today is yet another holiday but the last now until April but it means that again my morning has been filled with the constant sound of snoring, no matter how much I love Adam I will never get used…..

The start of the beginning

Posted on August 17, 2015 by livinginalimitedword

Something has aggravated my diaphragm big style. When I woke with the pain yesterday, I was sure that it was once again down to my intestine. I had been to the loo the morning before. That meant I was due to go again anytime in the next couple of hours. Knowing that, I brushed aside any concerns and I just got on with my day. Sure enough, about an hour after getting up, I went to the loo and the pain subsided. The worst of it was relieved and what remained was my normal background annoyance. I honestly believed that was it, the day would continue without any need for a booster pill. I do my best not to just reach for my 10mg Morphine tablets at the first sign of raised pain levels. I know that a lot of people wouldn’t even give it a seconds thought, but I live by a rule that says I don’t take drugs that I don’t really need. Pain has to be constant and bad enough to make my daily life difficult before I boost my normal background meds. To my surprise, despite having a not totally but reasonably empty intestine, the pain started to rise again within twenty minutes of sitting back here at my desk.

The pain was running along its normal track. Right across the front of me following the line of my lower ribs. Dull across the central strip and reaching a sharp jagged pain near either end. As long as I am sat here not doing anything beyond typing, it is livable. That doesn’t mean that it’s ignorable, just not bad enough to stop me doing what I want to. When you have lived with something unchanged for over 2 years, it doesn’t matter what it is, I have found that you do eventually adjust to it presence. Having said that, there are different levels within what I now call normal and this was above my normal background. I was nearing the end of yesterday’s post when I was suddenly aware that I had without realising adjusted my breathing. I was once again settled into breathing in a very shallow fashion. It used to be not just a conscious decision, but a real effort to make myself do it. Our bodies are designed to ensure we have more than enough oxygen in our system. Making yourself restrict your intake because doing so causes pain isn’t normal, even essential at times. It used to take intense concentration to find a level where I had enough air, but without straining against the already tight muscles. Even then I knew there might be a price to pay. If I didn’t get it spot on, my lungs would take a sudden gasp, that, is a pain no one wants to have. There have been a few occasions where I have found myself shallow breathing on instinct when I was lying in bed, but to find I am now doing it whilst up, kind of surprised me. I don’t know why, as it makes sense that our bodies start to adjust by themselves, it’s just to date this appeared to be the exception to the rule.

All day yesterday, there was no relief from my diaphragm. I did around 1 pm, give in and take a booster. The pain wasn’t only worse, it had by that point spread all the way around me. Still worse on the left than the right and the pain was by then travelling upwards into my armpits and on it’s way triggering intercostal spasms as well. By 1 pm it had reached the point where it was driving me nuts. Plus Adam was by then sitting in the living room. Shallow breathing and talking have never really worked together. I hadn’t thought about it until yesterday, but I think that might well be the reason that I manage weekdays taking far fewer boosters. Monday to Friday, I have no one to talk to all day, so my diaphragm can do what it wants and frequently does. Booster pills may take away the pain, usually, but it doesn’t change the fact that the muscles are still tight and not working normally. As the day passed, the muscles of my chest where determined to remind me at every breath just how difficult it can make things if they choose. Breathing when you quite simply can’t expand your chest is difficult, these so called hugs must once again been coming from a Polar bear. As long as I stay relaxed and calm, no matter how tight, I can keep myself breathing. I know it is probably my imagination, but I have become convinced that at times, I can actually control it right to the point that I am breathing using only one lung. I am sure that is impossible, but it does feel as though that is what I am doing. Between spasms, the odd sudden intake of breath and just fatigue from constantly being controlled, by bedtime, there wasn’t a muscle in my rib cage that didn’t at least contain residual pain. It was another night where I could toss a coin as to whether I went to sleep or passed out.

I have little doubt as to what today will contain, my ribs told me that the second I lifted myself off the bed. A thumping headache told me just how last night was as well. I haven’t had a bad spell like this for a few weeks now. Everything has been surprisingly quite, not painless, or discomfort free, just at a level that I could handle without any thought at all. When I don’t think about things, I don’t write about them. I just wish their absence from my posts actually meant an absence from my life. The biggest thing running through my mind is not how it feels right now, but how it is going to affect me in the future. I have had a growing awareness since the COPD exacerbation that on certain days, I am getting slightly breathless just doing things like walking to the bathroom or kitchen. It’s not all the time and I haven’t been able to pin point what causes it, other than it happens more often later in the day. To date, just as when my muscles go into spasm, if I stay relaxed about it and just breath steadily, it settles down. To date, though, I haven’t actually had both at the same time. I don’t have the slightest doubt that I would manage it just as I do everything else. What I am thinking about is the future where that might happen all the time and much more severely. I am beginning to think that it won’t be a case of one or the other killing me, but a combination of the two working together.

It’s odd how I still persist in trying to keep my different conditions totally separated from each other. I know this particular separation was first caused by the consultant. He did say that even if I stopped smoking, that my PRMS could still stop me from breathing. He gave it that picture of one or the other, where the truth will probably be that they work together. That was part of the problem during the exacerbation, I kept getting extremely painful spasms. Lungs filled with water when crushed by muscles that don’t want to let go, don’t leave much room for what should be there, oxygen. Probably the only really good thing you can say about being that ill is that your brain doesn’t have the energy to really grasp the situation yours in. I didn’t once perceive any danger, other than landing up in the hospital. That was enough to be terrified of, more than enough for any one brain to deal with at one time.

It two months on now, yesterday was the kick that I needed to actually start think about it. I seem to need to have something that upsets my normal life for a whole day before they make it past my determination to ignore everything and just live. The thoughts started last night and were still there when I woke this morning. What is happening to my lungs is a complex mix and I am going to have to treat it as such going forwards. Clearly shallow breathing keeps the pain down, but I doubt it actually does the congestion in my lungs any good what so ever. Just as my immobility and spending 13 hours a day flat on my back isn’t doing them much of a favour either. I already know that I hardly cough, I never really have. But the danger of infection has to be raised by all of that and infection is the last thing I need. It’s taken me a while to realise the impact, but the only thing I have any control of is my breathing. I can reduce the amount of time I spend shallow breathing, I might just be better off taking a bit more pain and a few more painkillers for my overall health.

This morning, the pain is still there and not only did I have a headache when I woke, but I’m tired. Not fatigued, I’m tired, which means my sleep wasn’t right. Overall, I don’t feel great, but there’s nothing I can do about it. As I said something has aggravated my system. I have a growing feeling that I am at the start of some kind of flare. I could be wrong and I really hope that I am. All I know is something is wrong, something is pulling me down. Life doesn’t feel right in so many tiny ways, none big enough to pinpoint outside of my lungs, but combined are enough for me to fear that this is the start of something.

Please read my blog from 2 years ago – 17/08/2013 – Thanking the past

I can’t find the reason for it but for the last couple of days I have been somewhat emotional. Silly things happen or come into my mind and there are these tears fighting to escape from my eyes…….

It doesn’t work that way

Posted on June 10, 2015 by livinginalimitedword

I slept like the dead last night, it was one of those nights where someone switched of life for me and restarted it in what felt like seconds. Nights like that have been so rare lately that I felt it needed a full mention, just so I don’t forget that they do exist. Waking up in pain several times each night has been my normality for the first half of this year, solid sleep was becoming a distance memory. The pain and the discomfort are still there, but after going to the loo now three times in just a few days, I actually do feel a difference in the pressure sensation. It’s no longer like being 9 months pregnant and about to explode, maybe back to about 7 months, that point when in your first pregnancy when the fact that you are going to get even bigger, seems like some kind of sick joke. Unfortunately, everything feels to be at a stand still again, but I suppose the idea that it could continue as a daily event so soon is possibly still a dream just now. I did make an attempt yesterday to take the Psyllium in a vanilla milkshake, but it just didn’t work, so I will be sticking to my bread and pancakes for now. I am very aware though that I will need to come up with a few more recipes as time goes on.

I managed to hurt myself a couple of nights ago, it’s one of those silly little things that because it is so silly and it is so little, that it just drives you mad. All my life I have had the bad habit of breathing through my mouth when I am asleep, Adam insists that it is just as annoying as snoring as according to him, on a bad night I sound like Darth Vader. I always try to breath through my nose as I drift off in a vain hope that I might just continue to once I am asleep. The same thing always happens, slowly my mouth opens. I am sure I must have done this in the past, but it seems to happen to me at least once a week recently, just as I am dropping off, my jaw snaps shut. I don’t need anyone to tell me that it is a sudden nerve message, but there is a painful danger in it and one that occasionally happens, my jaw snaps shut on the edge of my tongue. Just like biting your tongue, it hurts like hell. Trying to go to sleep with your tongue sitting inside my tooth line is just as unsuccessful as try to keep my mouth shut. Concentrating that much alone is enough to stop me from sleeping, it really is a loose, loose situation. Catching it once is bad enough, but when I do it again in the next couple of days then my tongue unilaterally takes precautions and swells up. It’s not the brightest protection as it means I then do bite it during the day and if my jaw snaps that night, well the result is obvious.

There is one really odd thing that I have noticed over the years, it doesn’t matter how much pain your body can produce, do something small and silly, even as small as a paper cut and you know about it. I don’t know why, other than it feels logical, but if you live with high pain levels and your body is full of painkillers, surely you shouldn’t feel those silly little things or at the worst just notice them slightly. Trust me, that point of logic just doesn’t work. I have almost driven myself mad over the years trying to work that one out and the closest I can get is that our bodies are far more intelligent that we realise. This is purely a guess, but one that to me make sense. Pain is there primarily as a way of our body saying something is wrong and you have to do something about it. Shock pain, like the second that I bite my tongue, is a different pain, it is a pain that is on the emergency level and because it is sent out on a different system if you like. Shock pain is exactly that, an instant pain that warns us not to do something, even if it’s not our fault and our body did it to us. Because it is on a separate messaging system the blunting by painkillers is just that blunting, not relief, self-preservation says we have to be aware and our bodies hold that as the primary rule. I know from experience that I should be feeling pain right now from a swollen tongue, I’m not, the pain relief is working as it’s a different type of message. If I were to bite it again, which I’m not intending to, but I know that without a doubt for a few seconds, I would know.

Regular readers will have worked out that I am a love of medical programs, be it a soap, a drama or a documentary. What I have always loved is in the soaps and dramas, you will very often see someone being cut out of a car crash with limbs hanging off, being given lower levels of pain relief than I live on daily, but let them wince once and they are immediately given another 5 ml of Morphine, but it is exactly the same dose if they are screaming in pain. Despite all these programmes having medical advisors, there prescribing of pain relief seems to be somewhat odd. Watch a documentary and pain relief is held back as though it is coming directly out of the pocket of the person who is giving it. Unfortunately, that is more often or not the real picture.

My pain levels rose and rose over the years and I worked my way through several different medications before finding one that seems to be still working, although I know I am hitting the point where it needs increasing. I have though decided to wait until I see if anything changes after my six-week test of Psyllium. One of the things that I have learned is to not be scared or put off by what you see or hear from the media. I can still remember the day that I started on Oxycontin, I had this total fear of the stuff thanks to the way it has been demonised. I don’t know what I expected, possibly to be out of it, confused and drugged up in a way that I hate as much as I hate being drunk. Nothing happened, other than my pain reduced, but the doctors reluctance to increase the dose as it slowly stopped working was ridiculous. Then it stopped working almost totally, for some reason my body wasn’t breaking it down. So they changed it and I found myself on straight Morphine Sulfate. The same brick wall appeared again as my pain rose until I saw a consultant who told my doctor I needed more and I was to have it.

It doesn’t matter what you read, what your doctor thinks or what works for others, it is your body and if you are in pain, make sure you push until they get it right for you. Don’t expect miracles or to be totally pain-free, our bodies don’t work that way. But there is a drug out there for everyone and no one should have to spend days in pain, far less their entire lives.

Read my blog from 2 years ago today – 10/06/13 – Is it possible to understand pain?

I am so glad to say that it has clouded over and the temperature although high when I first got up seems to actually be a lot cooler, such a small thing but what a difference from this time last week. To those that don’t have MS I know it is hard to understand how anyone could wish for the sun to……