Getting it right

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…..

There is no name for it

It was just another evening, like any other, we were settled together on the settee, watching our normal Monday evenings programmes, but it wasn’t normal, I had a problem. For the last few days, I have been getting a lot of spasm in both my legs. It started with my left foot, as I mentioned a couple of days ago, then my right leg joined in. They have varied from mild to totally disabling, with no pattern or connections. Thanks to years of training, years when no one wanted to believe that I was really ill, I am incredibly good at covering up the majority of the effects. When people disbelieve what you are telling them, what they can see with their own eyes, even when any other idiot can see you are in genuine pain, they just roll those eyes and walked away. It was a reaction that I couldn’t deal with, as there was no reason for it. Ask anyone who really knows me, if there is one thing I hate, it is lies, so why would I lie in such a way, what did I have to gain from it, absolutely nothing. Trust me, there is nothing so painful as that, but I lived with it for years, and it turned me into a great actress. If they didn’t know it was happening, if I could cover it up, then life just went on as normal, all hidden and all ignored. In an odd way, I am now grateful to them, as they taught me something that I have found invaluable. For a totally different reason, I have always done my best to hide the worst of my illness, from Adam. He is both the greatest worrier, I have ever met, and the most loving and caring person, that I have ever met. Not long before I started on my Chemotherapy, which totally transformed my health for several years, I wasn’t in too great a condition, and I went through a several traumatic events. I saw how it affected him, and I swore that I wasn’t going to upset him, more than was totally unavoidable.

That though isn’t the full story, on top of how Adams reaction distressed me, there is something else, something that is far more difficult, and I never expected it. To call it embarrassment isn’t giving it a strong enough name. It is a feeling, that is much deeper and much more painful, almost as though being seen in distress, is something that damages my actual sole. I can bear the pain, but I can’t bear others seeing me in that state, and it doesn’t have to be pain, just any of the short-lived, violent reactions my body has, to what is happening to it. I would sooner spend time and energy, fighting to get off the floor, than to call for help, and no, it isn’t pride either. I don’t believe there is a name for it, well not one that I have found, as it’s so much more than any possible one I could apply. So what happened last night, didn’t leave me disappointed, or shamed, or mortified, it was closer to being destroyed by an atomic bomb.

Adam had gone ahead of me to the kitchen, it was coming up to 8 pm and time for my medications. My legs had been bad all day, I had been silently sitting there on the settee, shifting about a little, but trying to keep them relaxed and quiet, and mainly failing. As far as I could tell, Adam hadn’t picked up on my discomfort, he often does, but last night, he hadn’t said a word. When he left the room, I took the opportunity, to apply some force, to the worst areas, and gently massage a couple of others, before sitting on my wheelchair. I hadn’t managed to do a great job, partly because I didn’t have the time, and because it wasn’t only my legs that were causing me problems, my arms weren’t great either. I made my way slowly to join him, and I was soon sitting there using my nebulizer. It had taken me a little longer than usual to set the whole thing up as my right calf muscle was in a mid-range spasm. Despite sitting there applying my relaxation technique, the pain in my lower thigh suddenly went off the scale, them my ankle joined in. It was impossible to stay sitting, and as the pain shot downwards from the back of my knee to my ankle, I pulled myself up into so that I was leaning in the corner of the kitchen units, using them to cradle myself in and to take my weight. There was no hiding my pain, not only was I totally vertical when I should have been sitting, my face, and my voice had joined in with the more silent screaming inside. I couldn’t deal with the nebulizer as well, so I switched it off and stood there swaying back and forwards.

My left leg wouldn’t hold me, I fell back into my wheelchair and it was then that the pain in my ankle entered my foot. Adam shot around the end of the counter, into the main part of the kitchen, desperate to do something to help me. Then the pain got even worse. I was grasping the armrests of my chair so tightly, that I am surprised that I have a single nail left, they should have popped and snapped, with the pressure I was applying. I couldn’t even keep myself fully seated, my back was arched and I was twisting from side to side, in a vain hope of finding where the true trigger point was. By this point, my leg was outstretched, and my foot was pushed against the kick board, lifting me clear of the seat. Just as I have found in the past, one spasm triggers another, there were four main areas and as one eased, the next tightened again. Adam had dropped to his knees and was desperately trying to massage it away. For some reason, he seemed shocked, that he could feel the tension and tightness of each muscle he touched. He kept telling me that the muscles were solid and tendons pulled tight. As the pain shifted, he followed, it was so bad that I couldn’t sit still, or even keep my vocal cords, from expressing how it felt. I was talking to him and myself at the same time. Telling Adam where the pain was worst, and myself to relax, and most importantly, to breath. I am not exaggerating, it was the worst, spasm pain, I have ever had in a limb. He was working on my leg for a full five minutes, the whole time, I was fighting with the desire to grab a knife from the draw, and to somehow kill it. I felt totally under attack and there was nothing Adam or I could do. Then it broke. One by one, each area settled back to pain, rather than agony. Spasms don’t just go, they subside, leaving behind a shadow pain, as though you have been beaten up.

Earlier in the day, I had had an extreme attack in my left leg, nothing like that one, but bad enough that I was still able to feel it’s shadow. All I kept thinking was “Thank God, that it didn’t join in as well”. I sat there for a few minutes, just settling myself back to something close to normality. As I was about to go back to what I had been doing before it struck, I thanked Adam for his help and adding “I don’t like you seeing me like that”, he gently touched me on the shoulder and quietly said, “I know”, then he to went back to what he had been doing. There was really nothing else to be said, and I didn’t want anything said either. There is no reason on earth, why I should have felt as bad as I did, there was nothing I could have changed or done differently. There was nothing Adam could have done differently either. I was going to feel the way I felt regardless of anything either of us did, or anything anyone else might have done either, and I’m not talking about the pain in my legs.

This is part of my dread of the future. This is why I fear the point where these things will happen several times a day. Not just spasms, but the hoard of nightmare things my body can, and will do to me. I know that it is something I am going to have to get over, because that is my future. There isn’t any chance that life will continue as is, it is going to get worse. All those isolated events from the past thirty years, those events that have left my memory scared, will happen again, and again, and again, and without a doubt, there will be a few I haven’t even considered. All of it is going to happen in the sight of others. There will be no hiding, no acting or game playing that will hide it, and that to me is one of my nightmares. Don’t tell me to stop being stupid. Don’t tell me that it’s not my fault. Don’t tell me that it doesn’t matter. I KNOW. But I still HATE every second of it, and there is no escaping it. I have had people ask me what is the worst things about living with PRMS, well this is without a doubt one of them. It is a hard mental battle every time that it happens, and it has hardly even started.

Please read my blog from 2 years ago today – 03/11/2013 – Just a little control please

So many days just seem to bleed into another, nothing to define them from each other once you are no longer working. I woke this morning as I do quite often totally lost as to which day…..

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……….

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….