facing my fears

All I am going to say about the last 24hrs with my insides is, not good, not good at all. I feel as though they are taking over my entire life since I came home with that list of things to try. I am either trying to make things to eat with Psyllium or trying to eat the results, not alway as easy as it should be and the rest of my time wrapped up in pain. Being stuck in a situation that you can’t change in any way is wearing on its own. Being stuck there along with everything else in my life, well it’s pushing me into places that I don’t like going, those dark spots in my mind. The problem with those places is that they are an uncontrolled and uncensored free for all and they will drive you insane with worry over things that aren’t even happening. After two full weeks passing where I have done exactly what I was told to do, to not have one single positive sign that the doctor may have got this right, or that there is a possible positive outcome, is now beginning to wear thin.

I remember when I got my diagnosis with my PRMS that I thought it was the end of wondering what on earth my body was doing to me. I suspect that is a universal belief, as there it is in black and white, you have it, the reason for everything you had been battling against. When that letter came through, although the doctors had explained it to me in advance, I really let myself believe that life was going to get easier in so many ways. I know that may sound like an odd reaction to being told you have a progressive degenerative illness, but it’s not. You believe that if they know the cause that they will then be able to do something about it. I thought it was also the end of living in those dark spots your imagination runs riot and you convince yourself that you are dying, perfectly natural when no one can tell you what’s wrong. You don’t realise the truth is that that name means everything will be blamed on it and nothing done as the underlying cause is incurable. The more you hear that, the bigger those dark spaces start to get again, as you slowly realise that you were right all along, you are dying, not instantly but slowly. Imagination can be a wonderful thing, it can create magic, beauty and love, places you would want to live forever and places you wish you could share. It can open up worlds that can exist nowhere else, including the ones that horror writers feed on and scare the hell out of us with. I never have seemed in need of anyone else’s imagination when it comes to scaring the hell out of myself, my imagination can do that with phenomenal ease and regularity. With the help of my body, well let’s just say, no one, not even me wants to go there at all.

Last few days I have found myself locked in one of those dark spaces, my imagination was running faster than I could away from it. When you are in pain, even when you know the reason for that pain and you know your not at that second in real danger, our imagination has an art of totally ignoring all the logic it is being fed. I get scared, just as scared as I did in the past when I had no idea what was happening to me. In fact, oddly, sometimes I would say it is worse. I used to think that being scared was all to do with lack of understanding. As soon as you saw that the shadow man was nothing more than that, just a shadow, his power was broken. I used to think that being an adult, was all it took to be able to look anything in the face and laugh at it, it appears I was wrong. I can tell myself a million times that the pain I am in isn’t dangerous, it is nothing more than the PRMS doing what it does best. My nerves aren’t telling me the truth, they’re lying, sending out signals that say run, hide, get help, you’re in danger, all lies. Logic, my favourite belief system I ever found, you can’t argue with logic, it is what it is and nothing more or less, yet even logic can’t shine a light into those dark corners and kill the shadow man, as fear isn’t a shadow.

If pain didn’t scare me I wouldn’t be human, I know that. We’re hardwired to react to it as it is our alarm system there to tell us something is wrong and to keep us safe. In this case, the story of the “Boy who called wolf” is wrong, you can’t stop listening or believing what it is telling you, it’s there and it’s real and no matter how many times it cries out falsely, you listen and feel every second. I have always been able to deal with the pain in my arms and legs, no one has ever died from painful muscles without injury. I can see my limbs, I can check them over, make sure there is no cut gone bad or broken bones, limbs aren’t scary things, even when they stop working, their still where you can see them. But when the pain is inside, hidden, doing whatever it is doing for whatever reason, you can’t check it, see it or even often touch it. Let imagination get hold of that and the sky is the limit, what it’s doing, what it’s really doing could be anything. I don’t often admit that I’m scared, but in the small hours when the house is dark and silent and I am awake in pain, I often am. There is something about sitting by yourself, trying as hard as you can to be quiet as you don’t want to wake anyone, imagination suddenly has free rein. I have had everything from cancer to burst intestines, from strangled organs to internal bleeding, none of them real, none of them less frightening because of that fact. I never fear that during the day, but nothing is scary in the daytime, even when I know without a doubt that I have had worse pain in the day, it’s only the night that holds that power.

If there had been one illness that was tailor-made to fit with my fear it had to be this. You see I have never for some reason had a fear of dying, it’s something we don’t exactly have any control over, it happens and that’s it. My fear, my greatest fear has always been pain and having no escape from it and that is exactly where I live now. You would think I would have gotten over that one, but I haven’t. Even now, I fear it more than anything else and it has been part of my reason for not wanting to up my meds faster. I fear building up a resistance to them, of not being allowed strong enough drugs to deal with the pain of the future at home. Worse still that they won’t be able to give me enough pain relief when the pain eventually gets so bad I can’t bear it. It’s ironic I suppose that my greatest fear should become my life, but in my experience that is about par for the course. So there it is, my darkest fear which just like the dark spots that it lives in, I can’t escape it and I doubt I will ever escape it. I know I am a long way from alone in this fear, but just like the middle of the night, pain is something we all suffer alone, no one but us truly feels it as we do.

Read my blog from 2 years ago today – 5/06/13 – Heading for hell and not coming back

I chose yesterday not to write about how I felt for several reasons some as stupid as they get and others totally sensible. The stupid one was simple, I was trying hard not to think about it as I didn’t want to feel any worse than I already did, putting too much attention on something can I have found make it worse, almost as though by….

Getting things right

I have had enough of this, here ends the wallowing! I hate it when I feel like I have nothing left inside me not just for others but even for me, so just as I have done countless times before, I am calling an end to it and whatever it is that is doing this to me, well it can *!?* right off. I don’t like swearing, that doesn’t mean I don’t do it, just that I don’t like it. Getting rid of a blue meanies is hard work, but it is like everything else, if you already know that you can do it, well half the battle is won, it’s when you don’t know that you can do something that it really holds the greatest fear and that fear alone can make it impossible.

I woke this morning and found myself once again having great difficulty getting out of bed, since Adam started actually coming to bed, even though he still sleeps most of the night on the settee, I have shied away from using the mattress elevator. Partly because when he in not working he is normally still asleep when I get up and partly because when he is about get up, I feel embarrassed to use it. Adam, shut-up before you bother saying it to me, I know it’s stupid, “stupid” has a lot of things to answer for in all our lives. With it being a bank holiday, he is still asleep, so getting off the bed this morning was a struggle, something I have to admit I have been finding more difficult recently. The problem is the pain in my diaphragm and my stomach, I have been compensating for a while now, trying to use other muscles, like those in my waist to do all those actions that my main muscle structures just can’t actually manage. The result is the pain is just spreading and spreading, everything is getting more and more difficult, which is a big part of the reason that I got myself into a downer for the last few days. Once I had put on my pyjamas I took my first step and straight away wished I hadn’t, just like yesterday the shockwave caused by putting my foot on the floor, caused pain right through my left side of my chest, especially around the lower edge, where my diaphragm is attached. In less than 4 minutes from waking I already knew what today held for me, the same as every other day recently. By the time I went to bed yesterday I had pain running from my lower ribcage both sides, across my upper body to my left shoulder, the left side of my neck and right down my left arm to my fingers, two hours into today and I am almost at the same point again. There is one big difference, I don’t care if I have vivid dreams, I have already taken a booster.

It is the one thing I haven’t been able to work out ever when you can’t use some muscles, for whatever reason, how do you avoid damaging those that are called in to cover. Every part of our body is designed to cover certain actions and they really don’t like being used as substitutes, something I discovered when I lost the use of my arm, as my right arm alone just couldn’t compensate, it didn’t have the strength nor did it even know how to carry out actions alone that it usually had some help with. That I know is a clear example, but the point is that it doesn’t matter if it is a limb or some part of our internal systems, they can’t manage without everything around them working properly and that is far a more painful lesson to learn. Our bodies take such a battering from what our health does to us, between our muscles withering in front of our eyes, areas that are in pain and can’t be used as it causes more pain, it isn’t really a surprise that we land up hitting points where we feel as though we are under attack and that relief will never appear again. Just that simple action of getting off the bed, something anyone else would do without a single thought, didn’t just pull all the already aching muscles of my waist and stomach, but also those in my arms, which took most of the strain not to mention my thighs, as I tensed them instead of my stomach. Every action seems to have a problem attached, even though we don’t realise it, just sitting uses muscles just to stay upright on a chair. Add in the annoying twitching nerve in my spine, something I have been holding still now for years by using my waist and back muscles, muscles that won’t hold it now and each twitch is now pulling on muscle higher up and the spreading pain starts to become clearer and clearer.

I never foresaw just a couple of months ago that what has been an ongoing problem with my bowels, could land up in such a mess of pain. Constipation sounds like nothing, it sounds almost comical and something that isn’t even worth thinking about, a few laxatives and that’s it dealt with, but it’s not. There is no tablet, no medicine, no diet, that makes dead nerves work, just as there is no medicine that is going to fix my PRMS or COPD or any of the other things that might be hiding inside me. To date my attitude has always been, if they can’t fix it, I have to live with it. The important word there being “live”, I have let it get the better of me slowly but surely I let it wear me down and I am the only person who can fix that, if nothing else. So today is day one of kick myself up the backside, but it has one huge caveat, if I get the letter to go to the hospital, there is no putting on the brave face when I get there, this time they will see the full picture, with no smiles there to cover anything up.

It hard to smile all the time, ill or not, but what other choice do we really have. Pain isn’t something we can get rid of, it’s something we live with, like it or not and trust me none of us like it. There is one thing that I know without a doubt and that is moaning about it and letting it play on our minds, does no good what so ever, the last two days achieved nothing other than to make me feel worse. I am the one who is always saying that happiness is a choice, so I know that without anyone reminding me, I chose to be happy a long time ago, I just needed to remind myself of that fact. In a funny way, having a few bad days every now and then can actually be good for us as it reminds us just how good our lives really are and that there is still so much to enjoy, even if our bodies don’t totally agree with us and as long as it is just a few days.

Read my blog from 2 years ago today – 4/05/13 – Health warning

Sometimes life moves so fast that there is no chance of keeping up with it, but at others is will drive us mad with it monotony and incredible resemblance to a snail. I guess as humans somewhere along the way we developed this huge ability to never really be happy with the way things are, and a need to have everything just so, which they never are. Wishes and dreams are what fill our childhood with wonder and cripple our ability to be…..

Deja vu

Last night felt as though it was never going to end and when the alarm clock did herald the official start of the day, I just wanted the night time back. The discomfort I had been in since Friday had left me with no option but to step up to the stronger laxatives prescribed by my doctor, I knew before I even headed to bed last night that the night wasn’t going to go well, as it was night two and the results of the second dose is always the same. I had spent the majority of yesterday switching position and searching for the wonderful thing that I knew there wasn’t the slightest chance of, comfort. Getting into bed was bad enough as it means using those muscles in my stomach that were already straining and locking into spasms and were passing on their warped messages to my diaphragm. Go and try it right now and see for yourself just how difficult it is to sit, swing your legs onto the bed and then lying down without using a single muscle from your ribcage down to your hips, add in the pain and the picture isn’t a pretty one. I lay there longing for sleep but having to control my breathing as anything beyond the shallowest breath just wasn’t pleasant and meant sleep wasn’t going to come easily. I have been using relaxation tricks for years, not only do they let you drift into sleep, but they are one of the few things that allows me to cut out the chatter for a while, as the conversation has to be held on the subject of rest and which muscle I want at that second to go to sleep. It doesn’t usually fail, but last night it did, last night there was just too much pain and too many breaths that hurt, for me to be able to control the rest of my body and keep my mind fixed on what I wanted it to do.

Pain in the day time hours is something that anyone can deal with, we take our tablets, we distract ourselves and our days pass, one after another, with their differences but somehow they all feel the same. In the day time, no matter how bad it gets there is always something that takes us on, hour after hour passes and the pain comes and goes with them, we have things to look forward to, points in the day which we mark as the next one to get to. Time to eat, time to do this or that, the time we have company and the time we know we have to get through alone and we keep going, we keep going not because we don’t have a choice, but because we choose too. We have those good days the days where pain isn’t our main issue in life, it will be something silly like a tick that drives us mad, or we are filled simply with the joy of being alive. Daytime is easy for everyone to survive, ill or not, but night time, night time even when we are not in pain, night time without sleep is just wrong and not only wrong, it is painful in its own way as we know what will happen if we don’t sleep. I have got used to the fact that I can no longer roll over or even balance on my side, that going to bed means that I am there flat on my back with nowhere to go until it’s time to get up. But when you can’t find sleep, the one thing you desperately want to do is curl up, but there I am stuck flat on my back with nowhere to go, no position more comfortable, because there is no other position possible, all I can do is lie there like some kind of dead plank. When pain drives you to distraction, the one thing you yearn for is comfort, the chance to ease what is happening to you, but the only options are to stay where you are and hope sleep takes you or get up, where there is no chance of sleep at all, so I lie there motionless and hoping.

Waking at 4am told me that I had been asleep, somewhere along the line sleep did win but even at that point I was finding it hard to believe I honestly had been asleep. It was just the same at 4am as it had been at 9pm, nothing had changed other than the fact I was aware of being awake rather than aware of trying to go to sleep, whatever had happened in between seemed to have vanished as though they were only a second apart. Despite all the well measured drugs, prescribed by those experts who don’t live this way, the pain has won through and I was once again conscious of it and that meant I was awake. I pulled myself upright, my body was screaming that it needed to move, it needed to be anywhere other than flat on my back, so up it was. There isn’t much to do in a house at 4am where the only person you have near you is asleep and you have to move quietly not to wake them. Even this has now become a routine, when pain wakes me, I get up, I take a pill, go to the loo and head into the kitchen where I light a cigarette and sit in the dark, waiting to feel the edges of the pain dulling. I used to get up and leave my sleep mask on the bedside cabinet, waiting for me to return, but these days I take it with me and for good reason. I have walked around this house in the dark for years, never switching on a light as there really is no need, our home like almost every home in the world these days is peppered with LED’s glowing either red, green or blue, waiting for their next command, they alone light my way, but they also pierce their way into my eyes. I don’t know what it was that made me think about it, but the other week I sat in the kitchen with my eye mask on, cutting out the lights and glow of my cigarette, to my surprise I discovered that going back to bed and back to sleep, seemed to happen with so much more ease. I already knew that total darkness, protection from the steady glowing alarm clock and light that sneaks in above the curtains brought a better nights sleep, but I never thought that those tiny specks of light could make such a difference, trust me they do.

Last night I lay there still in pain, booster pill or not, my mind racing over old posts I had written about my fear of finding the doctors when I eventually see them, insisting that I spend some time in hospital with all the issues that would bring. The chatter kept coming and coming, I slept, I know I did, but it wasn’t real sleep and with every pain that my mind felt, more chatter filled in around it. I even looked at the clock several times, I was hoping what remained of the night away, yet at times it was just minutes, others over an hour, but it was still there, night time and pain. I thought that I would find relief in the sound of the alarm, but all I found was more of the same, but this time awake and the pain was getting worse and worse. Adam was just out of the shower when I found myself flying to my feet, once more I was feeling spasms so strong that they brought tears to my eyes and this time I knew there was going to be some relief. No matter how much pain my PRMS puts me through, for some reason this is the only pain that I feel is unjust somehow, how can something as natural as going to the loo, actually be like this, how is it right that I have to lose half of one night and then almost a whole nights sleep every week and three days of discomfort, to achieve what everyone else manages without the slightest thought. Four visits to the loo, each as painful as the last has at last brought me to the point where I knew I have a chance of peace for a few days, before it all has to start again.

Pain in the daytime no matter how bad is somehow easier to deal with, but at night, at night it is a hell that there is no escape from, nowhere to run to and nowhere to go. Night time is the space in our lives where we are supposed to heal, to renew and regenerate, to be ready to deal with what the day holds, but when you don’t get that, when there is no rest, then the daytime becomes something else, they lose their fun, their sparkle and their specialness, they are just more hours of pain. Tonight I will sleep, today is just another few hours to go through so that I can find the sleep that I should have had already. Tomorrow will be a better day.

Read my blog from 2 years ago today – 31/03/13 – Summertime, sleeping time > http://bit.ly/ZuX4r1

Now full of wedding cake life is settling back into normality, the proof? Adam is snoring on the settee! lol I have to say that last night after they left I was so exhaustive, I sat sort of not really with it or with anything else either! being in that sort of limbo land is somewhere everyone knows well as it is the point we go through as we fall asleep, I seem to have learned how to go to that point even when I am sat talking or watching TV……

Teach me before it’s too late

I am sat on my not used for a very long time blow up cushion. After four days of taking the laxative liquid that my doctor prescribed to work with the Lactulose nothing had happened, apart from a very disturbed nights sleep where I kept waking with the pain of things moving but going nowhere near where I wanted it to go. I even woke up pouring with sweat and feeling terrible, but despite it all nothing other than that I could feel it all sitting low inside me, so I decided to attack it with a suppository, bad move! Well not totally true, it did get things moving, but it also started a run of spasms in a place I haven’t felt them for quite a while now. In the past it has subsided in a few minutes like most spasms, but this one, well it just doesn’t want to let go at all. The pain is so strong that it is impossible to sit down without the aid of my cushion, actually that isn’t totally true, sitting on the loo is wonderful as it puts no pressure on the muscles in spasm at all. Sitting when it feels like someone has grabbed all of your tail-end with a large set of pincers, then twisting them and refuses to let go, is not my idea of comfort, unsurprisingly I am just waiting for the Morphine to kick in. It is one of the few spasms that just doesn’t seem to like most to break by applying pressure, logic says that sitting would be the best thing possible, but the second I try it, I am on my feet again. I can only guess that it is actually deep inside me and not as close to the surface as it feels, when your insides go into a tight spasm, it can be extremely difficult to deal with them, it’s second only to on my list of horrid spasm to those in my diaphragm and intercostal muscles and only lower on the list as it doesn’t happen so often. It can be easy to fall into the false situation of thinking that spasms only happen in the muscles we know exist and use daily with knowledge, where ever there is a muscle or a nerve, PRMS will find it and play with it until it gets fed up and moves on.

Adam came home from college and went out almost straight away as my prescriptions had arrived from the doctor, so he headed out to the chemist to get the final parts of the delivery system set up. As we thought, all we have to do is phone them and let them know that I have an ad-hoc prescription waiting to be picked up and they will arrange the rest of it, but I did once again manage to get myself wound up about one small silly point. When Adam handed over the prescriptions, he was told that they would be delivered on Monday and if they found anything needed ordering they would order it in them, delivering it when it arrived. I don’t know why, but I hadn’t thought about there being no deliveries at the weekend and for the life of me, I couldn’t understand why they would be waiting until Monday to order anything that they didn’t have and it was a point that I couldn’t let go off. When my mind locks on to something, it seems to take a long time for it to be willing to let go of it again, it wasn’t Adams fault that he didn’t think about questioning that point, it just didn’t occur to him as important, but every chemist I have ever dealt with orders drugs in the second they get the prescription. It put this huge doubt into my mind about the whole thing and I couldn’t stop myself from going on about it as though it was his fault. Once I realised, I apologised as I already knew that he was somewhat wound up about something else and all I was doing once again was piling pressure on him for something he had no control over. Luckily, the chemist also phoned us to question one of the items that they thought didn’t look quite right, they were correct and it put a lot more faith on my part in their ability to live up to the service they were offering. In the last few weeks, I have been doing exactly the same thing over and over again about all sort of things. Clearly, as I keep find myself writing about different instances of this, it is something that I am truly sorry for doing and truly unable to do anything about at the second it starts. I have been racking my brain, trying to find out just what is causing my outbursts as honestly, they don’t normally happen this often. All I can come up with is that in the past few months, our lives have been nothing like normal, it has been a constant change and upheaval. It’s not just my health, we have had to deal with and buy a new fridge, TV, skybox and the suite recovered, this means a trail of shopping around, deliveries, house upheaval and the normal stress that goes along with all of that. Also, Adam has had a lot of time off so far this year as he had to use up his holidays before the end of April, which again has thrown routines out and confusion on my part as to where he is and what he is doing. We are also still working on sorting out all the that happened at the end of January, nothing this year has been normal and thanks to my pain levels being raised by my lack of bowel action, I haven’t been getting my full nights sleep every night now for months. I honestly think that all that is happening right now is my brain screaming for peace, to be allowed to just veg out at the back of my skull and not be used again for a while. Unfortunately, that isn’t going to happen anytime soon, well at least not until we have been to see the doctors in the Gastrology department again.

At times, it is easy to forget just what my body is going through and how one little change can put me into a tailspin, all of the above is enough to send me not just spinning but could have easily sent me into the biggest crash I have ever had. I know I am hard on myself at times, but to me there is no excuse, brain damage or not, to put anyone through the third degree just because their brain doesn’t work the same way as yours. Adam knows I don’t do it on purpose, that it is all too often my pain talking and my brain failing to engage as it should, he tells me over and over not to say sorry for it, but right now, that is all I can do, I just fear for what the future may hold when I don’t know later what I have said and how I said it. I have seen in plays and documentaries on Dementia, Parkinsons and Alzheimers people who either say the most incredibly hurtful things without knowing they have or out of frustration start to hit out, I fear that either might be our future, but I don’t have the slightest idea how to avoid it. I just wish there was some sort of training that we could both gain from that would help us deal with what is happening today and what might happen in the future as I don’t want to keep hurting him as I already do and I definitely don’t want to hurt him in the future in any way either.

No one teaches us how to deal with being ill, far less how to deal with someone or even ourselves when our health has made us totally irrational and unreachable at that moment. I know there are some people who don’t understand how I manage, how I stay so positive or even how I have accepted what is happening to me, all of that I have found easy. What I don’t find it easy is accepting a future that means not only the loss of all that, but also the loss of me, without there being some kind of way of bringing me back and stopping me from hurting mentally or physically, the person who I love.

Read my blog from 2 years ago today – 14/03/13 – Relationships with Love > http://bit.ly/ZK9CNq

Having to work in a different order today as I don’t know when the ambulance will be, it could be any time after 11am which will cut my day right through the middle. So it has to be writing first today and fit the rest in where I can. I have done what I was asked to and had a lighter breakfast than normal and…..

Time to start thinking

I woke in the middle of the night in pain, it doesn’t happen that often but when it does my body has always found a way of making it quite clear why my eyes are open and I have a desire beyond anything else to just get up. I was in pain, at first it felt like the pain was almost from my waist down, which was something new, but as I woke up enough to take off my sleep mask, I began to realise that it was just my legs. Usually, there is a clear definition between my limbs but not this time, both were telling me the exact same story, if it had been my calf muscles that had gone into spasm, well that is easy enough to fix, but this was both my thigh muscles that had locked. For the first time I was lying there with a problem that I actually didn’t know how to solve, how do you get up when both your legs are so painful that you quite simply don’t want to move either. Usually when I wake with one leg in this sort of pain, I use the other one to sort of compensate, if it is my right leg, well I use my left to push it off the bed, I can then push against the bed frame to pull my other leg into a position where it and the rest of my body follows, the need for working muscles in the painful leg isn’t really required. I find the simplest way of breaking a spasm is to apply pressure, which can come from any direction, when the spasm is in my thigh, standing and massaging it as I slowly put my weight on that side, usually works well, but I didn’t have a spare leg to stand on despite managing to sit up, I wasn’t doing that well at applying enough pressure. The problem was two-fold, the mattress had too much give in it, plus the odd position I was sat in, was pulling on the muscles in the back of my thighs, pulling my legs upwards off the bed, I quite simply don’t have the strength when sat in that position to make the difference required. I don’t often find myself in that kind of loose loose situation, to date I have almost always found a way of doing what I have to, without causing more problems, painful or not I was going to have to at the very least get myself sat on the edge of the bed, that way I might be able to apply enough pressure.

I know that when pain is that bad, that time kind of stretches, it always feels as though it has been going on for hours, but the reality is it’s really just a few minutes. Inside, well you are fighting with so many different feelings, thoughts and I will be honest, a mild degree of panic. Pain on its own does that somehow, I am guessing it is some sort of chemical reaction, as mentally I don’t feel panicked. I’m not sure how much sense that makes but the rest of my body is in flight mode, yet my brain is still settled and clear as to what needs to be done, how to do it and with a list of backup plans, should the first one fail. I also knew that the position I was sat in on the bed with my legs out in front of me was a recipe for more pain, as if I kept pulling on the muscles in the back of my thighs and calfs, I was in danger of triggering more spasms and I really didn’t want any more. Sometimes to clear pain, you just have to accept you are going to be in more first, once my feet were on the floor and I was able to carry out the processes I knew worked as they were tried and tested, I was able to break the hold that the spams had. It isn’t the first time that I have had more than one spams at a time, what was unusual was the fact that I had it in the identical place on two different limbs. How it had happened, I honestly don’t know, I was asleep, what I do know is I never want it to happen again. Life has taught me that once you have a bad spasm the worst thing you can do, is relax, it is the perfect recipe for triggering another one, at night the best thing is to take a booster pill and then go for a walk, in my case that means walking around the kitchen while smoking a cigarette. During the day, well the list of possibilities is greater, but whatever else you do, keep flexing the muscles as much as you can until you feel safe to stop.

Before they managed to find the right combination of antispasmodics and pain control, pain like last night was something that happened a lot, now it is only occasional. I get far fewer major muscle spasms and those I do get, don’t normally cause intense pain. Most, like the ones I get in my diaphragm and intercostal muscles daily, on the whole, don’t really fall into the category of pain, they are more a combination of intense pressure and discomfort, which after several hours can be just as bad, just in a different way. Now though the problem with spasms is changing slowly and I have been aware of it for at least the last year of more, as my muscles are losing strength, being able to deal with a spasm in my normal way of applying pressure and massaging is getting harder and harder to do. At first I was blaming the problem on not my waning strength but on the increasing amount of fat lying over my major muscles, it may be playing its own role in the problem but I am becoming more and more sure that lack of strength is the bigger partner, along with the fact that a lot of my muscles are showing increasing signs of shorting, something I first mentioned about a year ago. I guess it is now time to start looking for other ways of breaking a spasm, other than massage and pressure as my hands aren’t going to be up to the job in the future. I have already sorted out calf muscles spasm as I found myself unable to break one of those a few weeks ago, the answer there is simple, stand with my back to the settee and press the muscle backwards into the settee base, that actually runs the entire height of my calf muscle, unfortunately I don’t have anything that convenient for my thighs.

For now I am not that worried, as long as the pain control holds and they are willing as they have been for the last two years to increase it when I ask, well things shouldn’t be too bad. I don’t think a spasm has woken me for over 3 months and as long as I don’t start getting them badly more frequently, I can live with it, but I do have to start working on the possibilities as although Adam is here to help when I can’t manage, he isn’t with me 24/7.


Please read my blog from 2 years ago today – 15/01/13 – Crippling Purpose

I slept well last night, I know that because I woke up able to get out of bed without too much of a struggle. I wish I knew what causes that terrible stiffness that settles in overnight, but not waking feeling as though there isn’t a joint or muscle in my body that can actually move, was great……..