The missing link

Would you believe that I still can’t make up my mind about my meds? I didn’t call the Doctor, I decided that I had to be a grownup and make a decision for myself. So here we go, this is my decision-making process, a peek inside what’s going on in my head, I just hope we find something. The starting point has to be to lay down the reasons and options. This whole thing is about getting my pain levels back under control. Over the last few months, they have been rising along with the increase of all the sensations that my body creates. They are inclined to trigger each other and I land up in these maddening spirals, which escaping take a rather large mallet, it’s just finding the right one. I have talked about extensively in the last month or so, about how I am being driven to the edges of distraction by a body that is out of control. If you don’t know the details, well it’s all written here, you just need to go back a couple of weeks to get right up to date.

It doesn’t take a genius to work out that living in constant pain, above the level where you are comfortable, isn’t nice. There are no painkillers that totally remove the pain, but to date, a combination of Morphine, Gabapentin and Amitriptyline have done the job not too badly. Both the Gabapentin and Amitriptyline are at their peaks, there isn’t even any wiggle room left there. Which leaves the Morphine, technically, that can climb and climb, up to unbelievably high levels and my Doctor is more than willing to raise it. It’s me who has the problem, with that.

I have this inbuilt fear of raising it any quicker than is absolutely and I do mean absolutely necessary. It’s a fear I have had from the very first time they mentioned the word. To me, Morphine is the drug of last resort, it is only used when everything else, has failed, and there is no hope left. After all, they don’t hand out Morphine for a sprained ankle, it is a drug that has a finality about it, if you like, it is the drug of the dying. I have been on it now for about 8 years, possibly 9, I’m not sure. What I do know, is that it scared the hell out of me, I took that first tablet expecting to feel drugged and out of control. What actually happened, was my pain almost vanished, other than that, nothing. I wasn’t having hallucinations or any, of the other things that for some reason I expected to. I was pleasantly surprised, but still hesitant about that name and the pictures it conjured up. MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are controllable. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years

MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are in my control. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years is too far off to be able to get any real answers. Morphine scares me because, it has and always will spell out the end of life, the end of my life.

The Duloxetine was prescribed to replace the Amitriptyline in the hope that it would offer a higher pain relief. I would have to take it for about three weeks to see if it does or it doesn’t, but it’s doing to me all the things that I fear about Morphine, which is beyond ironic. I have now taken four 30mg tablets, over four days, the first was the worse and each one since, has been slightly less reactive to the previous. I am still feeling disconnected, sensations are still heightened and I don’t feel right, which I really don’t like. On Thursday, I am supposed to double that to 60mg, right now, that terrifies me, as it also means the end of the Amitriptyline. I won’t miss the dry mouth, but when it is gone, will this new drug then turn out to be useless, will I be spaced out, terrified and in more pain? The only way to find out, is to do it, but is it worth it? I could just quite simply take the uplift in the Morphine and tell myself to stop being stupid.

This is the problem of owning a brain, if we didn’t have one, life would be simple, well maybe not, but you get my point. My problem isn’t physical, it is literally all in my head. I might know exactly where I am, I might have accepted exactly what that means, but it appears, that somewhere in this stupid head, I’m just not ready to act on it. Yes, I can throw the drugs down my throat, I can sit here day after day content in my day and my life, but I’ve been avoiding those bits I just don’t like the sound of. I’ve been giving them a rather large body swerve. The odd thing is, our care actually allows us to do just that. Look it up, “symptomatic treatment” and “palliative care” are exactly the same thing. No one ever said that all they could offer me was “palliative care” because, they know the mental connections that phrase would light up. No they said, there was nothing else they could offer, other than “symptomatic treatment”. Call it what they want, I don’t think that I really have a choice here, I want the pain back under control and I don’t want to feel like I do. The truth is, that either way, Duloxetine or Morphine, the treatment is called the same. My body has made the decision, I don’t think it could have made its opinion of Duloxetine any clearer, it not for me. Tomorrow, I will call the doctor with my decision and go with the increased Morphine, at least, I know where I am with that drug, unlike now, where I’m fighting to just know who I am.

Please read my blog from 2 years ago today – 12/01/2014 – A mind in free fall

I am coming to the conclusion that there are things in life that are simply designed to drive you mad, those things that one day work and the next don’t, are at the top of my list. The charger for my e-cig, isn’t working…..




Get me out of here

I want to run, just run and run until my body collapses, but how do you run, when you can only walk a handful of steps. I’ve had this feeling so many times in my life, and I can’t truly tell you the first time it appeared, but I was young, very, very young. I suppose we all want to escape at times, to just leave where ever we are, not forever, but just long enough to escape life, all life, until our bodies feel nothing, but, the freedom of honest exhaustion. It wasn’t until I was in my mid-teens, that I actually had the independence to just shut my front door, and run out into the dark. I don’t know why, but it’s usually at night this comes over me, at a time when most wouldn’t even put a foot outside alone. When I moved live to Glasgow city center, I used to run from my home to the Green, it’s just a large park, and it wasn’t that far from my then flat. A wonderful space filled with grass and trees, in total contrast to the grey buildings of the old city, and the steel and glass of the modern. I liked it there, it was silent and empty. I could always find somewhere I could sit in silence and recover enough, before, I dragged my tired body back home. Several times on warm summer nights, I have actually slept what remained of the night right there in the park, curled up under a tree. Depending on the tide, I often listened to the Clyde as it flowed over the weir, rarely did I see a single other living soul. When I told people what I did and where I went, they thought I was mad, but you’re only mad until other try it. I wasn’t any madder than one of those joggers I often saw, but for me, this had nothing to do with getting fit, just getting as far, and as fast as I could, away from where I was.

It doesn’t matter how many times I have set out, running until my lungs felt as though they would explode, I never got rid of the feeling, but that exhaustion, was somehow, my freedom. You see, you can’t run away from yourself, or even most of the situations you find yourself in, but when you are so tired, so tired that your body takes over and demands sleep, then you’re at least free for a while. Today, I so want to escape, I want to be anywhere but here, right now, in this body, as I feel so bad. I can’t believe the way that this new drug is messing with me. I thought last night was bad, but this morning has been bizarre and so hard to get through. Hence, here I am starting tomorrow’s blog early, as what is going on is so intense, I don’t want to miss how it feels, or forget what it’s doing to me. I thought that it would be gone when I woke, after all, it was 12 hours before that point, that I actually took it, but it wasn’t. Yes, it was less, but it wasn’t gone. I still felt spaced out, unsteady and muddled, even my eyesight was wrong, it was as though whatever I focused on, was all I could see, anything on the peripheral was excluded. I don’t understand how this drug seems to concentrate everything, but it does. It is somehow making everything intense, everything is sharper, from vision to sensations. Something’s, like eating, are supplying what I can only describe as a sensory overload. Flavour, texture, movement, balance, they’re all different, they’re all sharper, brighter and fixating. I’ve never known anything in my life like it and the fact I want to run, tells me, that every part of me doesn’t like it, I want to escape, but I can’t.

By lunchtime, I was feeling just that little bit better, more myself, to the point that when Adam phoned, I was able to tell him what had been happening to me. I wouldn’t have done that if I hadn’t felt the worst of it was over. Even when I did, he was offering to come home, but as always he was missing the fact, that I was feeling better. It took some time to convince him, that I really didn’t need him here, and I was now able to cope. I also decided at that point that I was going to go ahead with taking them that night. Even though I had said earlier that I would, I had honestly had my doubts. Part of me doesn’t want to feel any of this again, others are telling me that it has to be worth it, it has to be better than the way things have been. Surely my doctor wouldn’t have put me through this for nothing. So I’m resigned to another two days at the least, then I will think it through again.

Today: I took the Duloxetine again last night. Trust me, I didn’t do it with any sense of joy, it was closer to dread, but, I have to say that things are a lot better this time, Instead of life being intensified to 200% of everything, I’m closer to 150%. It’s not right, but it’s better. When I went to bed, I still went through that rather, dishearting experience, of diminishing right down to nothing, but at least, I didn’t take so long to reach sleep. In fact, the worst part of the night was when I woke for my nightly jaunt to the loo. I woke to find that my entire left side didn’t want to move. It wasn’t paralyzed, it was more as though none of that side had moved at all since I lay down, and was, therefore, set in that position and was unwilling to change it. I was only out of bed for about 15 minutes in all and when I returned to bed, there was still no change at all in the way it felt. Movement had changed nothing, it was sluggish, even unresponsive in it limited actions. When I laid down again, it felt as though I was returning to some kind of mold that I was slipping back into, and half of me, gave an almost audible sigh of contentment.

This morning, I no longer want to run. I’m not exactly singing with joy, but, I’m not that far from myself. The biggest change, well, that’s simple, I’m not scared of taking tonight’s pill. Yes, I can admit it now, last night I sat in the kitchen holding my pills in my hand, but all I could see was the new one, and I really didn’t want to take it. I had to throw it into my mouth and swallow quickly, as I was sure that if I didn’t, it would either stick in my throat or, I would chicken out. I am now hopeful that when I take it tonight, that I will be better again. It’s just a matter of wait and see. Part of me is wondering, if no matter what happens, I should call my Doctor on Monday and just have a quick word with him. This is so alien to me, but I just want to know if this is normal in any way, or if, in his opinion, I should stop it straight away, or perceiver. There is one big change, yesterday, I spent most of the morning feeling wired, followed by a gentle lessening. Today, I was still mildly spaced, but it hasn’t been followed by a normalising feeling, rather than by tiredness. I have right now, a great desire to just go to bed and have a good long sleep, something I haven’t done during the day, for over a fortnight. My lengthened nights sleep has had the desired effect, my afternoon nap hasn’t been needed daily. Today, that need is back, and it’s not even lunchtime. Hopefully, tomorrow, I will be able to, at least, think about something else, other than just how bizarre I feel.


Please read my blog from 2 years ago today – 10/01/2014 – A problem to think about

Last night I was dying again, I was simply lying there waiting for it to happen but as always it didn’t. I don’t know what triggers that feeling, what it is that makes you totally believe that you won’t wake the next day……




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…..

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….