An unexpected result

Yesterday was totally exhausting, the early start at 6am when I woke in pain, wasn’t the best start for a day that I knew was going to be difficult, but that’s what my body does best, annoy me in any way it can. Adam had taken the day off as he always does when I go to hospital and once we were both ready to go we sat as always with him bobbing up and down to the window, just to see if that noise was the ambulance arriving, when it did he heard nothing other than the front door buzzer, just as I did just sat here quietly at my PC. Our trick of getting him into the ambulance worked as it always does, they never seem to say no, although if you mention it when booking they always say no. As always the crew was really lovely, for a change one of them had actually tried going up and down stairs in the stairclimber, so totally understood when I said that I hated the thing, my opinion hasn’t changed at all. In fact, I would say that I now have another reason to dislike the thing, as the vibration that goes through me when it drops down each step, shuddered and shook my insides and by the time we were at the bottom, well the pain on my left side reminding me exactly why I was leaving the house again. For once I was greeted at the front door by not by the normal rain so I didn’t get the normal joy of rain coming straight down onto my face as the tip and shift me into the back doors of the ambulance, it was really nice to get there dry, if blinded by the odd thing in the sky I haven’t seen for such a long time. It’s only a 5-minute drive if that, from our home to the hospital, so we were in good time for my appointment and as usual as Adam works there, he pushed me through the corridors to where we had to go and were seen in just minutes.

Introductions over, I handed the doctor the sheet I had written up in trepidation, as I said before I honestly thought it would be put to one side and ignored, but he listened to what I said about not being able to remember or to always put things into the spoken word and he read. I watched as he worked his way through it, as I kept expecting to see that he was just skimming through, but he took his time and stopped occasionally to ask something before returning to the sheet again. He stopped when he reached the piece that said I was on Lactulose and he stopped dead looked at me and told me to throw it in the bin, not to take another drop of the stuff as in his words, “It’s a sugar filled rubbish that does nothing useful what so ever for anyone, out it in the bin”. I did question it as I thought at least that it was helping to keep my stools just that bit softer, but again he was direct and said “Don’t take any more” in a way that had me almost wanting to answer ” Yes Sir”. When he finished, he stopped and said, well I totally agree with you final line, then asked if it would be OK to examine me, while he left the room to fetch the nurse, he helped me onto the examination table and then disappeared, I had to ask Adam then to read me the final line as I didn’t have a clue what it said. My heart sank a little as Adam read back what it said “I am at a total loss as to what to do to relieve it.” I really didn’t want to hear that at all. The examination only took a few minutes, I had to ask them for assistance twice as I couldn’t either roll onto my side or get off the bed, it was at a really odd angle and pushing myself up was just impossible.

Sat back in the wheelchair at the desk beside Adam, there was that horrid silence before the doctor actually spoke and he was really nice and really seemed to totally understand the problems that I was having. He too confirmed that the problems are all down to my nerves not working properly, but he reassured me that the pain I am in isn’t a sign that the gut is about to burst, it is purely nerve pain being caused by my PRMS. He agreed that the nerves aren’t pushing things through me, but he didn’t think there was any operation that would help me, he then went through the possible ones and said that the removal of my large bowl and the attachment of a bag would help with constipation, but he didn’t believe that it would help with the pain. He was quite convinced that the pain would probably continue as he believes that it is my screwed up nerves that are behind it. He then asked me which was more important for me to be rid of, the pain or constipation, clearly to me the pain is the bit I need help with. We discussed the medications that my GP had put me on and he told me to stop all the laxatives as all they were doing was causing unhelpful spasms and wind, both which would make the pain worse, I agreed with him wholeheartedly and said that was why I couldn’t take some of them every day as the pain prevented me from sleeping and that in turn upsets my PRMS. We went over the useless help I had had from the MS Nurses, who simply told me to take the meds my GP prescribed, the pain clinic who told me there were two drugs they had available, both marijuana based and both in their opinion were useless and not worth taking, and my history of the whole problem when spoken about with other medical professionals including my relationship with alternative medicine, which is not favourable. At that point, I was almost convinced that I was once again going to be left just to get on with it, but he reached forward picked up a pen and piece of paper and started to go over things that might possibly help.

We actually have both a written list and a lot of things that he spoke about as possibly helping as he believes that it is going to be a case of trial and error until we manage to get it under enough control to be livable. He also noted that it had been a really long time since I had had any blood work done, they are now doing the normal full spectrum plus a test for celiac disease, which surprised me as it is hereditary. Having read about it now, I see why he wants to rule it out, but I expect that is what it will be, ruled out. When Adam and I got home, we both went online and started to research some of what was on the list and some of what was just spoken about and we are both in agreement where we are going from here. First, we have ordered two diet supplements the first is Psyllium Powder, he actually recommends that everyone takes 29grams of Psyllium every day, he actually said that the government should stop trying to get everyone to eat 5 a day and just to take Psyllium instead, as in his opinion it is a magical substance for our intestines. It must be the powder though as the capsules don’t work so well, it’s tasteless and it can be mixed into anything, online we found people who added it to all their baking or apple sauce, but I think I’ll just put it in some yoghurt to start with. The second is peppermint oil capsules that have to have an enteric coated, the coating stops you from digesting it until it is into your gut rather than in your stomach. On the subject of diet, he said that a lot of people like me who eat “healthily” have problems with their guts, apparently you can be too healthy and although not said, both Adam and I got the feeling he was saying “eat some rubbish it will do your body good”. I am to try the two supplements for a full six weeks to see if they make a difference, I guessed what he was saying, it might make things worse to begin with, so give it six weeks before dismissing it as they have to become part of my system rather than something my body wants to fight. The third step, I have to wait a few days for, he is going to write to my doctor, but he also wants me to start taking a different spasmodic on top of the one I have, he listed three and as I knew already, it is a case of trial and error, I will have to find the one that won’t upset my PRMS.

There are a few others on the list including eventually an operation to fit a nerve blocker, but he seemed really keen to keep me away from operations, something I have to agree with. He joked that the letter to my doctor was going to be longer than the piece he read written by me, I very much got the impression that he wasn’t impressed by the care that I haven’t received throughout the whole thing and said he was happy to see me again, but as he is a surgeon it would only be in a support role as he really feels surgery won’t help. We thanked him but I’m not going to waste his time, we both felt that we were armed with information that gave us enough to work on and enough suggestions of where to go if it failed. He also asked if he could keep the piece I had written as he felt that it was important that it was added to my notes, which made me really happy as you know that was something I was hoping for as going forward, it is all there, no more repeating and repeating and no one can ever say they didn’t know as it would be more a case of them saying they didn’t read. On the whole I was pleased with everything that was said and done, yes I was a little disappointed that there wasn’t a quick fix, I’m human, we all want the unobtainable. I don’t look forward to more weeks of pain and having to try different things just to get some peace, but it just might work, if it doesn’t well we can go back to my GP and say we have tried it all, let’s try the next level of attack. I also have to get used to the idea that alternative medicine might just have the answer, he strongly suggest trying anything that might help and to not shy away because I feel it’s quackery, he has seen these things work and I had to agree that I have nothing to loose other than the cost and everything to gain if I can loose the pain.

Once we had finished our purchases online, I went to bed and slept for over three hours, which included sleeping right through the alarm sounding for a full minute. It was Adam who eventually turned up in the bedroom to tell me it was 5pm and that I needed to get up, he was right, bed time was closing in quickly. I was so tired yesterday that I never really went online other than to buy what was needed, so I have a lot of catching up to do today, but I will get there.

Read my blog from 2 years ago today – 19/05/13 – A body filled with memory

I have a new toy! I know that a few months ago I said I wasn’t going to do this but on two days last week I found myself with nothing recorded and nothing on TV that appealed, which I hadn’t already seen. I know have my TV linked to my router and I can now access “On Demand”, although I have just downloaded my first list of programs I have to say from what I have found already I wish I had done this months ago. That is all too often, the most annoying thing when you dig your heals in…..

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……