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…..




Sticking to logic

Yesterday and today have had a somewhat odd feeling about them, it’s not something I can put my finger on, just the feeling that things just aren’t as they normally or should be. I suppose we all get days like that this, I know I have lost count of them over the years, but it has never stopped me wondering what is behind it. I have always played with the idea that like animal the atmosphere can directly affect us, or that we somehow have this sixth sense that picks up on those tiny things that all our other senses either miss or aren’t able to make sense out of. That said, it is a rather strange line of thought for a person who has spent their lives determined that logic is the only thing that we can trust as everything else is frivolous and rather airy-fairy. I think though it doesn’t matter what school of thought we claim to believe in, we all kind of hanker for someone to come along and prove that some of those more off the wall ideas, actually have substance behind them. When it comes to my health, well I have held totally to one school of thought and one only, I believe whole heartedly in what science can do, with that tiny bit of me still hoping that some ancient herb or flower that has been used for centuries, might just have the true answer. Once again a hankering for magic to exist in a world where everything seems so ordered, understood and regimented. I think that is why I find my PRMS somewhat annoying and why I have that desire to pull it all to bits and find the truth that others have somehow missed, as science can now diagnosis the condition, but it doesn’t have the slightest idea of why, or what to do about it.

Years ago when I was a DJ, I paid to go the Homoeopathy Hospital here in Glasgow, it has a really good reputation and somewhere that the pain management doctor I saw a couple of years ago suggested sending me to on the NHS. When I went there I paid what to me what felt like a fortune on each of me six visits, but I was desperate as no one seemed to be able to help me or even to tell me what was wrong with me, even though I really did think it was mumbo jumbo, I tried to keep an open mind. After my third visit, I was given a collection of what they called medications and went home to start taking them and actually at that point hopeful that something would come from it. I am sure it is already clear that I found no relief what so ever, but there is still one thing that I believe that the homoeopaths have right, they treat the whole person, not just the condition or the symptoms. The result of own experience has left me very reluctant to have anything to do with alternative medicine as I simply have no faith in it, despite still having a sneaky wish that there was something there. Over the last three years of writing and being on Twitter, I have had cure after cure suggested to me by well-meaning people who wholeheartedly believe that it has helped them or someone they know, each and everyone has had polite thank you sent but I haven’t tried one of them. I may have missed the one thing that could make a difference, or I might have saved myself a small fortune on things that would now just be cluttering up my cupboards or the local tip. I have come to the conclusion, rightly or wrongly, that for any medications, scientifically created or not, if you don’t have some belief or faith in what you are taking, you won’t get better or feel the improvement that you are told it will bring.

One of the easiest things on earth to do these days is to go online and investigate the medication you have been prescribed and I know without looking, for every good critique there will be an equally bad one from someone else. I have read accounts in the past about truly horrid side effects, many that were worse than the ones listed by the drug companies and usually nothing like how I felt at all. I can’t remember when it was exactly, but I know it wasn’t long after that I was diagnosed that I made what some people might see as a rather foolhardy decision, I was firstly never going to spend any more money on so-called cures, nor was I going to read all the leaflets that came with my drugs or read about them online unless I had a very good reason to, like I was feeling something new and wrong after starting on a new drug. I have stuck to this rule with only the odd occasion where I have broken it and when that has happened it has been because of something I was writing here in my blog and I wanted to be sure of my facts. Ask any ex or current sales person what they believe when they read marketing bumf and I am reasonably sure that all of them will answer in unison, none of it. I know that the ex-sales manager in me is so sceptical about anything marketing or sales people say or write that I now take all reports on what an alternative or scientific medication is supposed to do and what it might do on the side, with a huge pinch of salt, there is only one way and that is to try it for myself.

The more I have lived my life with these rules and heard from those who don’t, the more I believe that I am right. I have come across so many people who can list the side effects that they are waiting to have or have even before the drug has had a chance to act in the way it should, to know that there are a very large number of people who once they have read something, expect it to happen and not too surprisingly it does. I have also come across people who have bought into the hype around this cure or that and they find for them that it is the answer, which is wonderful for them, but the word placebo always enters my sceptical mind, while the Scot in me reels at the prices they are prepared to pay. I have been on and tried a long list of drugs over the past 14 years and I am the first to return to the doctor and announce “this doesn’t work for me” or “that it is doing this or that”. For me the only ongoing side effect from the whole list of things I take is a dry mouth and to have gained the benefits I have, that is a small price to pay. I don’t blindly go on taking them either, I do test them from time to time as I have discovered that often their effects change as time goes on, some even stop working altogether. I can’t recommend that to anyone as I am not a doctor, but I do it as I hate the idea that I am taking something that I don’t really need. I also believe that if there was an alternative medication that was having fantastic results for a large enough number of people it would be heralded so loudly that even my doctors and the MS nurses would be telling me to try it.

PRMS is totally unlike any other form of MS, for some reason that I don’t understand, nearly none of the drugs that help the other forms seem to work for us. To date for me the only drugs that have worked well as those that control pain but saying that it took until they gave me morphine to find the relief that I was searching for. Other than that Gabapentin helps with my spasm and Amitryptiline helps with the nerve pain, but in all cases they have helped, not taken them away. The only true miraculous treatment was mitoxantrone, it is a form of chemotherapy and is given in huge doses once every four months for three years. It does cause problems for some people with their hearts, so for that reason it is a treatment you can only have once, but it took me from a state mentally far worse than I am now and physically exhausted all the time, closer to what I would call normal, mind you I can’t judge that completely as I was still working full time then, something I clearly don’t do now. It slowed down both the rates of my relapses and the rate of progression and gave me a window of several years where things improved or stayed steady an effect that is now long gone. We all have to make a decision about which line of treatment we choose to go down, as I can see quite clearly just how the two different forms might fight each other and even make things worse. I have chosen the scientific line, but I listen and I read in hope about other things that might or might not hold hope, I read because like everyone else out there, I am searching for the magic to happen and for the pain to end forever. I read because even logic says that you should never close any door fully, leaving it ajar just enough to be aware of what is happening beyond it, as it may be the root of discovery and the substance that makes it logical after all.

Read my blog from 2 years ago today – 27/03/13 – A slow decline >

The days between things are always kind of strange, it is like being caught in limbo waiting for the second half that just feels so far away. Yesterday I was really quite whipped and I spent much of the afternoon happily in my bed, not really sleeping but in that wonderful in-between state where you are just drifting in time. Adam wasn’t home until after 7pm……

The rights and wrongs

There is such a huge possibility of drugs out there, that it is hard to know if what your doctor has given you is the right drug or not. I have spoken to so many people with not just MS but a huge range of conditions, about what they take and how it works for them, what has surprised me is the two things, the number of people who blindly take their tablets without out question and the number who are too scared to actually even take them, if you fall into either group, well I’m sorry if I upset you with what I am about to write, but these are my views and mine alone and I will explain why I have formed them. I have in the past touched on some of this but my intention it to go that bit further.

I don’t think I have ever not taken a drug that was given to me, the simple reason for that is, I honestly do think that despite my occasional irritation with them, doctors do know best. You only need to put the most simple search into Google to find a million cures for every single chronic illness there is, especially the incurable and deadly ones. You could try every single one, if you can afford to, but to date apart from the odd person here or there, none are cured and eventually return to mainstream medicine. The majority still find the their doctors solutions either actually work, or are the best and most frequently successful in controlling their condition, for many of us that is the best result we can ever expect. I don’t say this from only the side of someone who is a fan of conventional medicine but I also say it from the side of someone who has dabbled in the dark side, in the hope of a cure, for me homoeothermy, diets and “wonder foods”, didn’t work. So I do start from a position of trust in my doctors, even the annoying, rude ones, they might lack as people, but their knowledge of cures, potions and lotions, is greater than mine and I accept that at least. If I am prescribed a drug to take, I at least do them the courtesy of trying it before deciding that it is not for me.

I know that there are some people who take there medications home and then do the worst thing possible, they read the leaflet inside the box. If there was anything that was going to scare the hell out of someone it is those leaflets with all the possible side effects, the word most people seem to miss is “possible”, it isn’t a list of what will happen. Never, never read that piece of paper when you bring your tablets home for the first time if you want to go through the next week with half a brain intact. It is absolutely guaranteed that if you tell a group of people that a spoonful of sugar is going to make them sick, that some will be throwing up before they have even had time for it to hit their stomachs. The leaflet is there so if you suddenly have purple spots on your nose within a day of taking the first one, that you can check and see if it might be the new drug that is causing them, or your 6 year old neighbour sneaking into your house when your asleep. The leaflet is a legal requirement and a nervous persons charter for taking placebo to it’s most deadly effect. I have lost count of the drugs that I have been on through out my life and if there is one thing that I can say without the slightest doubt is, I have never had a side effect from any medication even once. I can say that with total confidences as there isn’t now a leaflet that I haven’t read, simply because I have had new symptoms appear and I have then checked to see what the cause might be & never has it been my meds.

I doubt that just reading those two paragraphs will stop a doubter from not taking their meds, so the last ditch attempt is this. Firstly, doctors train for years, not to make us ill, but to make us better. No doctor, other the tiny amount of lunatics who have been jailed over the years, which is a very tiny number, sets out to make patients more ill than they already are. Your doctor knows your health, what medication you are already on, if you have had any problems with meds before and what is the right drug for your symptoms. With years of training, experience and spending their entire lives steeped in caring for the sick, why would they choose you to suddenly change all of that for and risk throwing away their lively hood. If that doesn’t convince you to at least try it, then please go back, see your doctor again and discuss your worries and concerns, you are never going to feel better by putting your medication in the bin or doing something I saw on TV a while ago and couldn’t believe actually happens, people hoarding years of tablets, to scared to tell their doctor they aren’t actually taking them.

All that said, I don’t actually believe in blind faith in your drugs either, don’t pull a stupid face, it does make sense, read on. I have been questioning my medication for the very start, I even wrote a piece back in May two years ago, in which I explain that I test my meds, well I still do. I started testing due to some meds that didn’t seem to be having the desired effect. I had been taking them for several years and although they did have an effect to begin with, it quickly wore off, but I kept taking it just as I was told to. I guess that I must have taken it for about two years with no result what so ever, but it was on my list of drugs to take, so I did. On my annual visit to my neurologist I discussed the fact they weren’t working and he kept raising the dose, but I might as well have been swallowing Smarties, they did nothing, so I stopped taking them at first for a day just to see how I felt. I have to say I did dread the idea of not putting a tablet that was supposedly keeping me awake, was I just going to sleep all day or what. What happened was nothing, there wasn’t a single change in me in any way, so I went for the next day and the next and eventually through them away and never requested them again in my repeat prescriptions and the doctor never mentioned them again either.

There is a strange double edgeness about doing something like stopping a course of medication without speaking to my doctor about it, I really felt like I was breaking some kind of law, or that my doctor might suddenly say if I didn’t take them he didn’t want to see me again. I am like most people I think, in that I don’t want to be putting unnecessary chemicals into my body, medicine is no different, if it isn’t helping me I don’t want to take it, but only if it isn’t helping me. Right or wrong, I still test all my tablets one type at a time so that I can be sure which medication it is, stopping more than one at a time just makes no sense. Every medication that I take is needed and does exactly what it was prescribed for and nothing else and yes I have even in the last few months checked that my Morphine is working, in the case of those prescribed for pain, I seldom manage more than an hour without searching them out and taking them with relief. Some might say that it is madness to play around with drugs, but none of my drugs are there to keep me alive in the short term, they are there to treat symptoms, all that can be done for PRMS. If you are on a drug that literally keeps you alive, missing out a dose or two, might not be a good idea and personally I can’t think why anyone would take such a chance, but don’t do it.

There is one last thing that I think everyone who has chronic illness have to bare in mind when it comes to drugs, not everyone reacts to them identically. Just because your friend down the road has the identical illness and is on a particular drug that works wonderfully for them, doesn’t mean it will work for you. I guess my illnesses show that one wonderfully as there is a huge range of drugs for people with RRMS, not one of which works for PRMS, both may be Multiple Sclerosis but that doesn’t make them the same. Even those of us who share PRMS will probably be on different drug regimes, as it is so tailored to the person, that we all go through a trials and testing of drugs for the first few years until we narrow it down to what works for us. I have never been happy about the number of drugs I take daily or the fact they are in such a huge selection of different forms, from tablet, capsules and liquids, or that they are all different shapes and sizes, but when you have problems swallowing you always go for the version that works best. At my worst I used to have to crush them all and flush them down my nasal tube, at others I was mixing the crushed mess with maple syrup, now I try to swallow as many at one go as possible, that way my throat opens and the majority pass. What I take and how I take them will go on for ever, just as everyone else’s life with illness does.


Please read my blog from 2 years ago today – 25/11/12 – Belief in Placebo 

I was about to start writing when one of those infomercials appeared, what it was selling really isn’t that important as 100% of the ones I have seen I have never wanted to buy or……