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……

A medical hiding place

I feel as though I haven’t stopped for a second in the past week. That is clearly not the truth and something I am not physically able to do anyway. It’s still how I feel. It’s not only how I feel, I actually know where that feeling is coming from. It has been over a week since I last went to bed and didn’t even wake once before the alarm sounded. It’s not as though I have even got out of bed each time. I have often just glanced at the clock and returned to sleep. Somehow, it has been enough though to install the impression of no real sleep. With sleep being an important requirement of my life, it has been enough to make me feel drained and fatigued. Add in the muscle pains that have been driving me just a little off the edge and the picture is clear for all to see. I know it isn’t behind every time that I have woken, but I have been very aware of having bad headaches both during the night and when the alarm sounds. I have never been that bothered by headaches throughout my life. They were something that I just didn’t do, even when I had the most stressful job in my life, of keeping the call center running. Stressed to the max and I still didn’t have physical headaches. I had plenty of other ones all around me, but not the sort that were physically in my head.

I’ve known so many people who have carried painkillers with them where ever they went just in case they had a headache. It is also one of those things in life that would have made me a millionaire if I had just had them with me and passed them out charging a pound to each person who asked me for one. In fact, when I think about it, not only did I not carry painkillers with me, I didn’t normally have them in the house either. I stopped buying them when I discovered that none of those I could buy actually worked on any pain I had ever had, other than the very rare and odd headache. Having spent nearly 20 years undiagnosed I knew what pain was, but I thought I had to be the world’s biggest wimp. I was declared over and over to be healthy, yet no one else who was healthy ever complained about pains like I had. I remembered hearing a stat a while ago that I just googled to be sure it was correct. In 2005, every single person in Britan was taking on average 373 over the counter painkillers each year. So OK it’s an average, some of us took zero, others far, far too many, but it is a staggering number. The article was exploring our relationship with painkillers, I personally think it should have been examining our relationship with pain.

I don’t know where it has come from, but from my experience of life, too many people don’t seem to be able to deal with everyday pain. I know it could be argued, “Why put up with pain if you can get rid of it?” I can give you two reasons with ease. First, what is the reason for that pain? Find out, before you start eating aspirin, paracetamol and ibuprofen. Second, most people will happily take alcohol with them and many take more than they should, both can damage your liver. But those are the medical reasons, mine aren’t medical, although they back it up, but I have another reason. I would happily bet that 90% of people, especially the men, don’t have the slightest idea what pain is or what is normal or not. Too many don’t analyse or even bother to think about their pain, all they can think about is getting rid of it. Fair enough, none of us wants to live with pain, but the truth is painkillers don’t work on real pain.

I could take two of any of those named drugs right now and they would change absolutely nothing. We have fallen into a trap, that pain medications deal with everything, when the truth is they mainly don’t. How long did your last Asprin take to remove that pain you had? 5 minutes, maybe 10? They don’t work that fast! Most take up to thirty minutes to work, if you thought it was quicker, then you fell into the trap of the placebo effect. The pack also says you can’t take another dose for 4 hours. If you feel no more pain for those four hours, but it appears again soon after, yet again it’s placebo. Most actually work for about 2 hours. Ibuprofen might just make it to the 4-hour mark. We are all far too happy to throw chemicals into us without truly knowing what they are doing to us or how they work. When did you last read what is actually in that new and improved painkiller and what their side effects are? Most of us will have never read it. Someone said they would work and that they were safe, and we just take them.

The truth about pain is that it comes in many different forms and each form reacts differently to different drugs. The majority of pain, that anyone should consider treating themselves, normally doesn’t last any more than just a couple of hours. If you are in true pain, none of those over the counter drugs alone will touch it. True pain, will take you to your doctor or the emergency department at your local hospital. Two places, that I still avoid no matter how bad my pain is. None emergency pain is normal better treated by relaxing, rehydration and rest. If you normally carry painkillers with you, consider throwing them away and taking a look at your diet. Oddly, even I who’s diet is appalling, know it does make a difference.

Over the last 14 years, I have lived with pain every single day. For the last 6 of them I have been on Morphine, Amitriptyline & Gabapentin all the time in an attempt to remove that pain. What they have really achieved is to reduce it, not remove it. That’s why on top of that I have even more Morphine for when I can’t take any more of the breakthrough pain. I am still alive. I am still able to function as a person. I don’t spend my days curled up and crying, scared to move a single muscle in case it makes things worse. I have never and still don’t understand the habit of throwing tablets down our throats without being sure they will help. Even now, I still test my drugs. Those that are for the pain I have only managed to wait 2 hours before having to take them. I know exactly what each of my painkillers do. My everyday breakthrough pain is worse than any headache or backache that I have ever had.

My belief that I was a wimp has actually taught me that we have all fallen for the words of the marketing man. If I managed to go through years of pain, without taking time off work and doing everything I could to equal those I saw around me, anyone can. If you watch TV you can’t escape seeing the exact opposite message being spread daily. Pain is bad, unlivable and we can get rid of it in seconds, just take this pill or that one. They work quickly and they are, of course, better than all others out there. The medical companies are slowly becoming in control of all our lives and many people are letting them have it. It’s not just the painkillers they push, if they can sell it, they will create the need, a need that we don’t actually really have. If you have to carry painkillers or any of their other packaged miracles with you, don’t buy the brands, buy the generics. If you check the packets against each other you will see the medical license number. Brand or generic they are identical, that means the legally the contents have to be identical as well. The only difference is how much money you are giving to the pharmaceutical company.

“Normal pain”, that annoying feeling that is putting a damper on your day, requires you to work on finding out why and then living with it. Amazingly, the more pain that you push through, the more you are able to deal with. Like most things, we do get used to it. Pain isn’t the end of you day, it’s more a calling card. Have you ever thought that maybe your body is trying to tell you something. Maybe that headache is there because your body is telling you to go home and relax, and not go down the pub with your pals after work. Our relationship with pain is as important as our relationships with those we love. Pain and all other symptoms are there in our bodies trying to tell us something. Minor pain, minor message, but that doesn’t mean it should be ignored, nor should we be tricked into making it go away again and again and again.

Please read my blog from 2 years ago – 24/08/2013 – Dreaming a past that never existed

At this very second I find myself searching around me for a hammer. I don’t want to hang a picture of fix a piece of furniture, nothing that practical, I have a twitching nerve that has managed to get past the point of annoying, right through to the level of murder. I have to guess……….

Learning with attitude

Last night turned into one of those where I was restless and never really reached a deep sleep that could take me through to the morning. I know exactly what was wrong with me, but there is nothing that I can do about it. I am in the 48 hour period within which, when my body decides to actually let go, I will be going to the loo. It’s is total madness. I have gone from never going and never knowing when or if I would, to having a couple of days notice, followed by about an hours notice, then a two-second emergency run to the loo. I know it’s great that my bowels are moving, but do they really have to make such a fuss about it? Bodies I always thought were meant to be the vessel that carried us around. Perfectly preprogrammed with every internal process required and we didn’t have to ever think about it. Just another lie that I was told about life, along with the one that said “when they went wrong, they could be fixed”. It would just be nice for once to find something that I wasn’t lied to about. I remember all those horrid lessons at school called Biology when we were taught us how amazing our bodies are and how perfectly they worked. It was backed up by parents who took you to the doctor with every ailment from a cough to operations to remove those defective parts, but always being reassured with that line “the doctor will make it better.” Not once do I remember anyone once warning me that as time went on, I might just fall to pieces and unlike Humpty Dumpty, they wouldn’t be able to put me back together.

As a mother, I totally believed in never telling lies to children, never using baby language and in teaching not telling. I totally believed in answering all their questions, regardless of their age, or how busy I thought I was. I was so sure that it didn’t matter what you told a child, they only remembered what they were ready to learn and capable of understanding. But by constantly teaching them and answering their questions no matter how embarrassing or hard to answer, it meant they had the building blocks to move on to bigger subjects, knowing that they had the truth. It turned out to be totally true. My daughter can’t remember at all having the facts of life explained to her when she was 6, following a question triggered by the news, about how an 8-year old had had a baby. Yet she does remember never being fobbed off or being told a pack of lies about babies being found in a cabbage patch, or any of the other stupid things kids are so often told. I know that I was educated through the 60’s and 70’s and that things have changed since them, but I honestly think that children should be taught that they too could have their lives turned upside down by their health or the health of those they love. Having a small amount of knowledge about any subject, makes adjusting and learning far easier. Even if they were lucky enough to sail through life unaffected themselves, it might help to change reactions and attitudes towards those who do have an invisible illness. The stats say that one in twenty-five of us will have a chronic illness of some sort. That makes it impossible for someone to go through life, totally unaffected, even if it is just in the workplace, we all will know someone eventually.

The hardest thing for anyone to teach another is attitude. I so wish that it was something simple, something that we can just pass on to someone by placing our hand on their shoulder, but we can’t. I have never been able to work out where it really comes from, is it something that is deep set in our personalities, or is it something that we learn from our parents and extended family. For me, I would say it is a combination, but I do believe that it is also something that we can learn and change if we are determined to. I know I had the base there set in place when I was a child by the behaviour of my family. Their attitude to things like health and work were the ones that I started out with. I was and am, so different from my blood family that I think that is where personality plays its part, but I also learned much of it too. Our attitude more than anything is the thing that will make us sink or swim in any situation, but health is probably the biggest one. If you are the sort of person who takes to bed demanding nursing when you have a cold, you will find chronic illness really tough. But if you are like me, who had to have a limb hanging off by a thread to not show up for work, and even then if the surgeon had said it could wait a few hours, I would have gone to work, then it will be easier. That though is the bit that I think we learn. If your mum sent you to school with the measles, well health is probably not going to be something you see as an excuse, but it is only the start. Attitude is something that affects every second of your life when you are chronically ill. How we react to every tiny thing in our day, changes the next second and the one after. It is incredibly easy to bring your mood down, just because one tiny thing went wrong. This is where I had to learn.

It was hard and still is at times to just let things go. To just say that that doesn’t matter, it happened, it’s over and now move on. If you can’t do it, you have to learn it and learn it fast as heading down uncontrollably, has you heading into depression with rocket powered boosters behind it. I know that some people think that I am tough on myself, but I quite honestly have to be. I have to push out all those worries and problems, get rid of them and find a new way that works. I get rid of them here and if you read all I have written, I know that you will see that. In time, you also find the positive result of it. (I still hate that word positive.) It was Adam that first spotted it, he realised what I was doing and how this blog was my way of working through what life was throwing at me. You, dear people, are my psychiatrist, my counsellor and more. My writing is my sounding board, my place to shout and scream and come out of it smiling. I write daily because daily I am pushing myself to deal with life and to correct my attitude to me and the world.

Ask anyone with chronic illness and they will tell you that being ill has changed their entire view on life. I am no different and like others I wish I could inject all the knowledge into those out there getting it so wrong. I can look back and see just how wrong I was getting it and part of that reason was my attitude. I blamed myself for everything, it was always my fault and I was the one that had to work harder to get it right for everyone else and eventually me as well, somewhere off the end of the list. I let things get to me and dwelled on them, not for a couple of days, usually months, sometimes even years. My illness opened my eyes to what life is and what the point of it is. If I am not happy, there is no point. You can’t be happy with the world on your shoulders, even your own world. My life changed, some might say too late. I might have agreed once, but no longer because I am happy right where I am, living as I do and that is all down to getting my attitude right. Not even my world sits on my shoulders any longer, I am where I should be inside it and part of it.

Learning can be a painful process, but without it, our lives would be hellish and I for one never intend to stop learning. I may not have yet learned to love pain, but I have learned how to deal with it and how to live with it. Like doesn’t come into it, but my attitude most defiantly did. I stopped hating and fighting it and started working and living with it. If something is wrong with your life, if it can be changed, change it. If it can’t be changed then look to your attitude and change that. It can be done and it’s worth it.

Please read my blog from  years ago – I’m still here

Everything has to be rushed this morning as Teressa and John will be here around 11am, they are coming for lunch today as their is some show that neither Adam or I have ever heard of, but apparently has been running in Glasgow for around 20 years, that they want to go and see. It is always the way, family arrive turn your world upside down and…..

We can live with it

There is something wrong with my right hand and arm this morning. My thumb and index finger, right up to my wrist and slightly less so, right up to my shoulder following that line, feels as though they have been anesthetized. When I first woke this morning I could hardly make a fist, but that quite quickly passed and normal mobility returned, but it left this numb and tingling feeling behind it. Very much like your face feels after a bad visit to the dentist. The fact that it is working perfectly normally now is good, but after losing my left hand completely 10 years ago, I have lived in fear of this. It took about three months before I was able to do anything of any importance with it and nearly a year to return to normal. The whole idea of it happening again has been my greatest fear, especially to my right hand. When the left hand went, I had about three weeks of odd things similar to this happening. Feeling, sensations, strength and mobility came and went until the morning I woke to find there was nothing there at all. I couldn’t even hold it out in front of me and my hand just hung limply at the end of my partially outstretched arm. That whole memory has hung around me like a spectator waiting to pounce again. Well, at least in my head it has. This is the closest I have come to it and I have to admit that I am finding it somewhat worrying. There is nothing thought that I can do but wait and see what happens.

Oddly it was just last night that I got around to telling Adam about something odd I had noticed in the last few weeks with both of my hands. At first it was just when I went to bed and was lying there motionless and silent. There was a deep ache in both hands, in exactly the same place, from the tip of my middle and index finger right up to my wrists. It had slowly been growing, not as far as pain, just this ache that appeared only when I wasn’t moving my hands. I found it at first rather fascinating, there was no reason that I could find for it and the fact it was identical in both, just made it even more attention-grabbing when it appeared. It doesn’t matter how I examine what I do throughout the day, I can find nothing that could be causing it. Yes, I could cause the same ache in my right hand by lifting a full glass of coke, but there was nothing that triggered it in my left. This isn’t the first time I have been struck by aches and pains that are mimicked perfectly by the other side of me, but why it happens, I wish I knew.

At the close of yesterday’s post, I touched on the subject of the way that I deal with pain and sensations that become clear are going to be part of my life forever. I can’t remember when I started doing it, but I know that I have been doing it for many many years now. There is a point where I have to take a decision not to focus on or be governed by any pain or change that won’t or can’t be fixed. If I didn’t, I would have driven myself mad many years ago, rather than coping with my life as it is. When I came back from seeing the consultant and had the news that there was as I already knew nothing they can do about dead nerves and any operation they could do, would probably leave me in a worse mess rather than helping me. I was so glad that that I wasn’t facing having a stoma and that they had given me several things to try which might help ease some of it, I was delighted. Delighted but not stupid enough to believe that that was the end of it. I knew the pain wasn’t just going to vanish as he did, as he said quite pointedly that finding an answer to that, was down to me. As he said, I either had to learn to live with it, or I had to pursue some way of removing it such as alternative medicine, or more of the conventional medications I am already on. I have gone for a combination of two of them.

To those who are already long-term sick, I am sure you have worked this out for yourself, but I wish someone had explained it to me, rather than having to find it out by myself. You can’t just stop feeling pain if only we could, but you can work with it and you can put it in its place. There isn’t a single person alive who hasn’t had a pain that has seemed to just vanish, when, in fact, all that has really happened is you were busy and stopped thinking about it. Simply by shifting our focus, like giving a child a sweet or an ice cream, the pain moves into the background, not healed, just put in its place. Part of what I do is based around that theory. I work hard on not focusing on it. When it is severe and I have to deal with it, I just get on with it, as there is nothing anyone can do about those peaks. The rest can be pushed backwards and can be forced into just being part of the background of pain I live with all the time. I use distraction all the time. It is built into everything that I do and is why I used to never stop doing things. When I was mobile that was easy, there was always work or housework that needed to be done, or something I could do from my long list of hobbies. I never just sat there moping about my pain. It’s harder now, but as you know I stay as busy as I can. I doubt anyone can find a point in my day where I am not keeping my brain busy if not my body and it works.

It isn’t really a surprise that I along with everyone else has the most issues with pain in the evening. We have stopped, we are doing nothing but sitting in front of the TV and that pain always makes itself known. It just gets worse when we go to our beds, as the TV’s minor distraction ability is gone. What I do though isn’t just about distraction, it’s about losing the focus on any individual pain and turning them into a mass, not a point. When I was writing all the time about the spasms in my diaphragm and the constant ongoing pain in my intestine, I was over focusing on that pain and its cause, I felt it all the time and it didn’t matter how busy I was, I was still thinking about it. My week in bed due to my chest was actually a blessing, as it broke my focus and started the process for me. Without it, I would have had to be hard on myself, forced myself every time I caught myself once more thinking about, or feeling it alone above all other pain, to think about something else that had nothing at all to do with pain in any way what so ever. If you like, forcing myself to ignore it. I have even gone as far as doing those psychobabble things like visualising it and pushing it away from me. It may sound silly, but if you don’t tell anyone what you are doing, no one needs to know you have just joined the loony brigade. For those sudden high spikes in pain, I have on occasion resorted to using breathing techniques I was taught for use during labour and they work too. Probably not the best thing when you’re out shopping, but they work.

So OK, none of it is rocket science and it doesn’t stop me feeling that high-level pain, that is what my 10mg Morphine tablets are for, but the rest, the rest is livable. I like millions of others, will never be without pain. The biggest thing to changing it and to living with it is our attitude and our focus on it. If you let it rule your life, it will do exactly that. If you work on making it just another part of your life, along with taking the medication that your doctor prescribes, you can live with it.

Please read my blog from 2 years ago – 19/07/2013 – Time in nothing

I guess I am heading into a weekend where I will be in my bed rather a lot. The temperature here is rising by the second and it’s only 9:45, for me the forecast looks gloomy, blinds shut, windows open and lying on my bed wishing that it would just end. This morning I swallowed the….

It doesn’t work that way

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……