Deja vu

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

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

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

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

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

Read my blog from 2 years ago today – 31/03/13 – Summertime, sleeping time >

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

A narative gone mad

It is official, my brain has left the building. When Adam leaves for work each morning I do exactly the same thing every day, I go to the kitchen and I sort out two things, my medication and my breakfast. You would think that that would be a simple enough task when you do it every single day, it appears not. I am still trying to find something that doesn’t make me feel sick in the morning so when I did a small shop the other day, I added a few options to my list, first was the hot cross buns which are now gone and next where some rather nice pain au chocolat, not something I would want to eat every day, but occasionally they make a treat. I decided that I as they were in the fridge that I would have two of them, they are far nicer when warmed through, so I lit the oven and left it to warm while I counted out all my meds and poured out the thick horrid gloop that is the medication for my bowels. Everything sorted out in the kitchen I came back through here to wait for the ten minutes it would take for breakfast to be ready, filling the time by sorting out a few more bits and pieces here online. I must have become engrossed as I suddenly realized that I had been sat here for at least 20 minutes and my pain au chocolat were going to be ruined. As fast as I could I headed back into the kitchen in the hope that I would still be in time to rescue them. As soon as I put the light on I was stopped dead in my tracks and stood there feeling rather confused, as there on the counter where the meds I thought I had taken, when I thought back I remembered that I had poured out a glass of coke to swallow them with but instead of taking them, I had left the room with my coke in hand. Not only where the tablets sitting on the counter, but I couldn’t smell breakfast at all, I should have been smelling burning or at the least the smell of overcooking, but I couldn’t smell anything, I opened the oven which was on, to see what was happening, nothing was happening as I hadn’t even put them in. Two simple everyday tasks and I had failed on both, I know it isn’t anything major or even that important as there was no harm done in any way, but it is annoying as once again I failed simply because I took one step out of routine and I lost the synchronisation of the tasks. Normally I pour my coke once I have done everything else, as the glass I pour when I first get up, usually still has enough in it to take my tablets. Pouring that glass of coke was a big enough distraction to my brain, for it to decide everything was done and I was then free to head off and get on with the rest of my day. I am finding it more and more frustrating as when you can’t trust yourself to do even the smallest tasks, well it makes the bigger ones more daunting, how can I do things like dying my hair, when I can’t even make my breakfast and take my tablets, what stage will I miss out and how much damage would it do.

Every single person in this world has a narrative that goes on in their head, it is there I believe to keep us sane and on track, it tells us what we are doing and what we have to do, plus it runs a story line to our life, it is the way we work things out and make sense out of things that have been happening. It makes us smile to ourselves as it picks up memories that we thought we had forgotten, or shows us the faces of those we love and it scolds us when we have done things that we are ashamed of, even when that thing is so many years ago, that we can’t even remember the year that they happened it. Despite the fact that it chatters away at us continually, when we are not engrossed in our work, the TV or conversation, we all live hand in hand with it and the second there is space for it to intervene and fill our minds with what it wants at that moment, it does. It is something most of us don’t even think about as it has been with us all our lives, constantly keeping us in check and ordered. I don’t know if it is because I have spent so much time in the last 8 years listening to that narrative, without the joy of work to distract me or even conversation, or if it is the damage that my PRMS has done to my brain, but I all too often now find that I can’t shut it up, that no matter what I am doing it distracts me. Even when Adam is here, I know that I lose track of what we are talking about because somewhere in my head, I am lost again listening to that chattering. That though is the truth of the lack of concentration, we all understand it when it is a case of something catching our eye, something material and tangible that we can use as an excuse for getting lost somewhere along the line, but when it is nothing more than your own mind, a mind that you can’t shut up, well that is when you feel you are really losing it. When you can’t hold onto even a stream of thought, like now when I am writing this, without racing off somewhere else with no way back other than to reread what I wrote myself, well it gets messy and I don’t like messy, inside my mind or out. The worst thing is that if you stopped me asked me where I had just gone, well that interruption would leave my mind once again blank, searching to just find something that makes sense, just seconds and my trail of thought, or even the chatter that gets in the way, has been forgotten.

It has been 7 years since they last did any tests on my brain, the last time that I sat and went through all their test, drawing shapes, naming the things in pictures, trying to remember lists or the facts from a story just been told to me. I did really badly on the last one, I hate to think how I would do if they were to put me through those tests today. Even the tricks they tried to teach me, those methods that were supposed to keep my memory working on my side, no longer work. When I do remember to use them, I fail because that chatter gets in my way and once again I am out of sync with what I should have been doing. Miss one tiny step, stop for a second, do anything that will allow my brain freedom to take me somewhere else and I fail, there is no way that I would remember any silly list that they read to men, nor would I be able to complete any of the games they wanted me to play. It wouldn’t matter how many pictures they showed me, how many different shapes I was supposed to remember and draw, I know without even starting them, that I would fail nearly all of them and fail them with style. I can remember so many odd things about those tests, but the things I remember aren’t the details, they are the feelings I had when I was sat there feeling like a child being forced to perform when all I wanted was to run away. I remember feeling insulted that I should be treated in such away, like I was some kind of laboratory trial, despite the fact I knew it was being done to measure the changes, but who were they being measured for. They say all the time that they can’t predict what my PRMS will do, so how do those tests help me, other than to tell me I am losing more and more of me. I honestly believe that if they were honest and just said that they wanted to test me to help with the data for those who will follow me down the path of PRMS, well then I wouldn’t have felt so bad about it all and maybe I wouldn’t have decided to stop going to see them. Being a lab rat isn’t a bad thing when you at least have been asked if you mind being a rat, rather than being told it was all to help me, it never helped, it just made me feel bad.

Life is a strange thing, we spend all our time desperately trying to make those lives better, to improve them and make something of them, then something unseen sneaks in and the one thing that drove us so hard, those thoughts, memories, dreams, and desires, suddenly become the very thing that stops us from achieving anything. It doesn’t matter how much pain I am in or how difficult something is to do physically, I like everyone else out there in my position continues to do what needs to be done, as we have no choice. Then this thing that none of us can live without, our brains, steps in to make every single act just that bit harder, not because it directly causes us more pain, but because it means we seldom complete anything as it was planned and constantly have to repeat those actions we would rather not have to do even once. Without the ability to follow even the simplest plan or routine, life becomes twice as difficult as it should be, if I could have just one part of me cured, one part of me restored to how it used to be, it would be my mind as it alone would change everything else.

Read my blog from 2 years ago today – 30/03/13 – Why sore >

Apart from tiredness I have to say things aren’t too bad, mind you it could be covering everything else, I have found that happening before. It is almost like your body is so tired it can’t be bothered to ache at the same time, a form of laziness I applaud. To be honest I think it is more a case of being tired stops you from wanting to do anything else so you…….

Living in a threat

Sometimes I just wish that I could feel like the old me, even if it were just for a couple of hours. Everyone sees me as being such a strong person, someone who is alway positive about life and doesn’t get pulled down by anything. Mainly they are the people who don’t really know me that well. I guess when you learned as a child to live behind a screen, to hold bravado as the strongest trait anyone can have, well you carry it on right the way through your life. Those who have read from the start, right the way through today, well they might know a little better that behind the person who writes as though the world is a wonderful place, is someone who is just as scared about every single step they take and where their life is going, just like every other single person on this planet. I used to think that there would be a point in life when all that fear would drop away and I would really have all the answers to all those things that as children we think adults understand and know, but are hiding from us for some warped reason, only to find the truth is they knew just as little as we did. Don’t get me wrong, I do have and always have had days when life was just good and the problems around it didn’t matter, not for a single second, and I still do have them, but then I remember and it all looks so different. I am as vulnerable to life’s ups and downs as everyone is and just like everyone else, if someone was to walk into this room right now, I would smile and disappear behind my screen again, simply because you can’t spend your life in a constant state of fear and those around us don’t need ours added to theirs. So today is a day when I can see all the bad things, all the things that I normally brush aside and smile at, not sweetly but in with a threat attached, it’s a day where I feel cold and in need of crawling back into bed, not to sleep, but just for that simple childhood comfort that bed brings with it.

So where did that all come from, well the first line, I just want to feel like the old me, the one who wasn’t ill all the time, the one who wasn’t in pain and didn’t spend their life trying to find something, anything that mades them feel better. I actually envy those who have relapse-remitting MS, because I do still remember the joy of being in remission when OK my body was still showing the signs that something was wrong, but at least I could still manage a normal life. To be honest, I don’t think there is anything crueler than a progressive condition as it takes your entire life and turns it into a threat. It’s a constant glimpse of your future with the knowledge that it is still just practicing for the main event and that once it has mastered everything, it will be so much worse. You can’t help looking backwards and trying to work out the exact path that each symptom has taken, trying to work out that angle you might see on a graph and then to extrapolate them off into some mad planet you can’t even imagine. There is a fact that I have noticed and that is there is never a point that you can say this can’t get worse. I have hit far too many points when I believed that I had reached the worst it could possibly ever go, just to find out it wasn’t the worst at all, there is still more it can do. Everyone has these scales in their head, scales for different sensations, for example, pain, we have a 1 to 10 and we know where on that scale the pain we are feeling is. Simple, no. The problem starts with a small fact, none of us are working on the exact same scale in the first place, they are all individual and dependent on our own life experiences. Life experiences change as time goes on, when your symptom reaches that number 10 on your scale, where do you go? All you can do is rebuild that scale, what was 10 has to move downwards as there always has to be space as we now know it can get worse, so does 10 become 9, 8 or even 7? Progression means it is going to get worse, so how bad can it get and which bit is the worst, what does our future really hold once you have gone past the worst you thought it could get and you know there is more to come?

Beside those scales that measure our symptoms, are the scales of time, how long is quick or even slow? No one can tell me how long any of the symptoms I have will take to get to their final position, will it be another year or 5 years before I can’t breath without help, will my bowels stand up to another 10 years of not working without dynamite attached, or will they give in totally and require intervention? PRMS is blind progression, blind because not even the experts can give me the slightest idea of what will happen when or even next and to live like this is really some kind of cruel joke, without any hope of laughter at the end. Is it any surprise that I hide behind screens, not just for others but for myself as not even I want to think about all of this all the time, but then there are days like this when it brakes through and my mind is filled with a million questions without one single answer. I used to get angry with the doctors for not diagnosing what was wrong with me when I first went to them in my 20’s begging them for some help, in an odd way, well I am now glad that they got it wrong as I at least had part of my life being totally blind to the truth. Years of being treated for all the wrong things actually were years when yes I was ill, but I convinced myself that I could survive as clearly I wasn’t any more ill than the next person, as if the doctors could find nothing, then maybe they were right and I was just a wimp and yes I know I have written about that before. Oddly, I heard someone else on TV the other day saying just the same thing and just like it was for me, she too was relieved to find out that she was really ill and that there were other out there who shared just what she was going through.

Without our screen, those places we can not so much hide but shield ourselves with, progressive illness wouldn’t just drive us into a deep depression, it would drive us totally mad. Yes, I do live in a fantasy world, where I tell myself that I am fine and that I can still deal with life and all it throws at me, but the only other option is one I don’t believe helps to even think about. That strength that everyone talks about, the ability to move forwards when what is ahead of us is unthinkable, could just as easily be seen as madness, as who on earth pushes onwards when what is ahead of them is a living hell? We do, the people who still remember just how special this whole business of living is, the people who have already lived through more than anyone should and know that they can still live well through more than even they can imagine.

Read my blog from 2 years ago today – 29/03/13 – They are married! >

A few Christmases ago I was given a gift of a good bottle of champagne, I decided to keep it for the right occasion. Yesterday at last brought that day I had been waiting for, the day to open and enjoy the contents, to toast those I love and care about and to enjoy as part of a celebration. I can’t think of a better time, than the day of my daughters….

Keeping it small

I just had far too much for my breakfast, I fell for an offer on hot cross buns and landed up buying two packs rather than one, nothing unusual there for any shopper, but I never throw food out until there is no other choice. There were six buns that had to be eaten today, I know that Adam will without a fight happily eat three for his breakfast, so I ate the other three, one bun to many. Now I feel as though I have just eaten a huge overly rich three-course meal and my insides are telling me so, why is it I can one day eat two, but try three and I want to throw-up? There is such a fine line between comfort and wanting to explode and not just when I try to eat hot cross buns. When you do nothing, well you don’t need that much to eat and if you eat too much, well the weight piles on as I already know, slowly I have been eating less and less, my appetite has diminished along with my mobility, but the scales still tell me I am eating too much. I try to not eat too much at any one time, I have become more of a grazer than a feaster, so I am not surprised that now feel over full.

Food to me isn’t something I am over bothered by, I know that sounds an odd thing for anyone to say, but I have been the same right through my adult life, unless I am really tempted by what is on offer, I just don’t want to eat. I will and always have been happy to live on the exact same diet day in day out for months without even thinking about it. Adam doesn’t like it one bit and has always done his best to try and get me to eat the foods he likes, but there appears to be a golden rule, if he likes it, I wouldn’t touch it. Food has to be either lushes or decadent for my interest to be sparked, I am not the type of person who is tempted by normal everyday foods, my idea of a nightmare meal would be something like steak or beef burger and chips, or even a curry, in fact, anything else that I would call average British fare. Add on all the issues that food causes me, the choking and then the digestive problems, well, food is just easier to be kept simple and little. For me to be tempted to eat every meal on every day, I would have to be moved into a five-star hotel with a Michelin chef cooking every meal for me, but even then I would be asking for small portions. The odd thing is that I know without even trying it that I would very quickly get fed up of even the best foods and would start requesting my mono meals of choice. It appears that like everything else that lives alongside chronic illness, appetite becomes something that is under a microscope and our likes and dislikes are all amplified. For some reason when your entire body is working against you, it can also feel as though the outside world is doing exactly the same thing, what is meant by Adam as a caring gesture, like the bars of chocolate he kept buying me, somehow turn into some kind of challenge, I feel as though I am being forced into eating them to keep him happy. I eventually had to ask him to buy no more of it as I didn’t like it that much or want it, I thought the fact it took me weeks to eat one bar might be enough for him to get the message, but the truth never reached him and had to be spelled out.

When I found that porridge was suddenly making me feel sick when I ate it, I had to find something else, so I tried to eat yoghurt every morning, a month and a half on and it too is making me feel sick. It has become something I was having to force myself into eating, hence the not so hot idea of the hot cross buns. When breakfast started to be a meal with too many problems, I thought that maybe it might be better to have something around 4pm instead. I started having soup, which apart from one particular type, has been fine so far, but I don’t hold out much hope in continuing it as I am now starting to feel sick in the early evening, so badly the other night that I had to ask Adam to fetch me an anti-nausea tablet as I didn’t dare move just in case. Other than lunch, everything that I eat these days seems to land up making me feel sick, I can only guess that it has something to do with what is going on in my guts, but it does also make me just a bit angry. This is now the third time that directly or indirectly, my PRMS has turned food into an issue, I have either through luck, changes in my PRMS or changes in my lifestyle, managed the other two and been able to return to not a normal pattern of eating, but at least one that has allowed me to be able to eat enough to live. Three times I have found myself in the position where I can’t eat and every single one of them has one thing in common, food makes me feel sick. To date, the doctors have been of absolutely no use other than to put a gastric nasal tube down my throat for three years. I eventually got rid of it once I was housebound, not having the stress of getting ready to go out, leaving the house and being in the office, meant that I started to find food that bit easier, but I have never since then been able to eat normally, it has had to remain small amounts when my body can take it. Now I once again find myself facing an appetite that just doesn’t want food and stomach that makes me feel nauseous when I do force it to take something.

In all it has to be about 10 years since I was actually able to eat a normal diet, 10 years of picking at this or that, trying to find some way through the mess that is my body. I know it has to be fed but what no one has been able to tell me is how to do so without it either wanting to come back up or getting stuck inside me. After 10 years you would think that I am used to it, well in many ways I am, but I am also incredibly fed up with it all as well. From the outside, it might appear that it is phasic, it’s not, it’s just it has been going on so long that I don’t really talk about it, but I do admit that like everything else from body pain to diaphragm spasms, the mess with my guts seems to be making it worse and I am spending more and more time feeling sick, regardless of portion control. I know that nausea is part of MS, but the link to the amount eaten isn’t something that I can find anywhere.

Read my blog from 2 years ago today – 28/03/13 – Navigating help >

Today is the big day, Teressa will be married this afternoon! Despite all the changes in date and the whole trauma of actually getting John here, we have made it to the long awaited wedding. There are still several hours to get through before I log on to the live stream so it is a case of keeping busy….

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……