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 > http://bit.ly/16hi9LZ
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……