Chapter 12.

                          Aches and Pains, Drugs and Pills!!                                                               

              Apart from certain parts of my body that have or indeed are subject to differing levels of pain, I am, so far, a lot better off than some, notice how I refrained from saying 'luckier', that is because not one of us would ever consider saying that we are luckier than him or her, we have all got M.S and that is bad enough!  The pain that I suffer is mostly confined to my left side, arm, thigh, leg and foot, bit of a pattern occurring there I reckon!  The pain usually manifests itself as an ache, sometimes mild but there are times when the ache turns into what I can only describe a 'dead' leg or arm, almost like somebody has been continually thumping it, over and over!  Other times this ache spreads around and spreads it's magic on my hips and pelvis, right round the back to my bum, this leaves me with a feeling of being kicked, kneed and punched! Now back in the day, as schoolkids , kicking each other up the arse for fun, dishing out dead legs and arms was considered a 'right of passage', such a hoot if you were the kicker but not so if you were the kicked!  When this feeling occurs to me nowadays, I am definitely the 'kicked' and putting on a brave face along with a not very flattering limp, is about all I can do.  I suppose that when it comes to dealing with pain, I am very 'old school',  I knew it was there but I just tried to ignore it, or if I could, just work through it and as much as I would try and blag it, those who knew me best, could always tell that something was hurting!
                     Due to the nature of my work, I am constantly on the go, I have to make myself busy at all times and as I have said before, this is because I find it very hard to relax!  Although my dexterity is by no means what it was,  my upper body strength is still pretty good, I'm no 'Arnie' but I do manage to lift or drag heavy items and boxes about all day and although I do have my own office and I am constantly told to sit down and take it easy, I can't fly my desk all day now can I!!  The company makes sure that Health & Safety issues are 'strictly' adhered to at all times, this is with everybody not just me and we have to undertake courses on how to lift, how you should reach up and out, what you should and should not climb, basically to make sure that you are safe and that you carry out your daily 'tasks' safely!  We are even shown the correct posture you should adopt whilst sitting in your office chair, how far and how high your P.C monitor should be away from you, so the Company does look after you while you are in their care, in these day's of litigation frenzy, they are not stupid now are they!!  Obviously, this makes total sense if you are able bodied or an M.S'r and I do work to process (most of the time), I will admit that with me, a certain amount of 'bravado' creeps in from time to time and I am almost paranoid at being seen as the 'weakest link' in the team, so I do push myself more than I should and I would be the first to acknowledge that on occasions, this has been detrimental to me!

                      There are some pains that I cannot deal with easy, like the pain at the base of my skull, where it fits to the top of your neck , across the top of my  shoulders  and down my back!  I am constantly 'rotating' my head, one way or another and it hurts, it has for thirteen years now but I still can't get used to it and this in turn makes my shoulders ache, so I am constantly shrugging my shoulders up and down and back and forth!  I used to be able to deal with the pain this caused by taking Paracetamol and for a long time it did seem to work but in recent month's I have had to concede defeat and am now on prescribed pain killers and these have helped a lot and I now find it much easier to deal with the pain! The first prescribed drug I took for pain relief was Nortryptaline and these did work for a while but eventually my Doctor swopped for a  a drug called Amatryptaline, this had virtually the same effect but was cheaper. Now this baby really worked great but the side effect was horrible, it was great for my pain, brilliant in fact but it gave me some horrible hallucinations! 

                           These hallucinations were  really unpleasant, I would see things moving in the carpets, shadows on the wall had a mind of their own, it got so bad one night and I got so freaked out that I punched the table light off of my bed-side dresser and these incidents really started to scare my wife, especially when I lashed out at her, in fact I pushed her out of the bed a couple of times and on one occasion, she awoke to find me leaning over her with my fists clenched, sweating and shouting rubbish,(nothing unusual there then!) As far as she was concerned, that was it, enough was enough and she made me get in touch with my Doctor the next day and he promptly told me to stop taking them!  I must point out that I was away with the fairy's at the time of this incident, I did not hurt her and more to the point, I did not have a clue what I had done and promptly fell back to sleep each time, it was only the next morning that I realized the severity of it all! 

                   One thing I am is honest and blogging or talking about my M.S story has been me pouring out the truth, the good, the bad and the.....well you know the rest!  So the next few lines took a lot of soul searching, balls if you will, for me to put into print! As things are miles better now, no, make that millions of miles better, I just thought, fuck it, tell it like it is (was)!
                     For a short time I was put on a drug called Gabopentin, great for the relief of my pain but not so for me as a ..........man!!  It basically, overnight, caused me to suffer with what is known as 'erectile dysfunction' which caused a lowering of my libido (no pun intended, or could that be a euphemism?). This really, I mean REALLY scared me to death, what the hell was happening to me now, did this mean that I was going to gradually lose the use of everything!  Come on, kick a man while he is down why don't you!! 

           So I got in touch with my M.S nurse(slightly embarrassing as I used to go to school with her)  again and she told me of another drug I could take and so now I take Carbamazipan and they are great in all areas, pain relief, they give me no side effects to speak of, just great, obviously in an ideal world I wish I did not need them anyway but I now take the barest dose and that is enough. If I need more, not a problem and I have to have regular blood tests to check on my liver function but I can live with that! 

                  Due to my problem with fatigue, I had taken the drug Amantadine for many years and this had helped me to deal with this constant problem.  However after nearly six years,  it had become less effective and so after consultation with my M.S nurse, it was decided that I should try Modafanil.  I am very lucky that I have a great Doctor and he prescribed it to me without any problem and this drug has been truly wonderful!  My levels of fatigue have vastly improved, it is simply brilliant, however I have to take a folic acid tablet ( thank God for that!  a drug with a short name for a change) and another tablet called Cyanocobalamin to help with my vitamin B12 levels.  This cocktail now keeps everything functioning as it should.  Due to Modafinil being a stimulant, I have to have ECG's on my heart  to check that it still works properly, not a problem to me, more of a problem to the nurse at the surgery making sure that all of the pads stick to my chest, I can't help being a hairy git now can I!! 

                             The 'down' side of all the drugs that I now take everyday (makes me sound like an uber junkie!!) is that I have to deal with an awful itchiness, mostly on my head and shoulders and it is constant!!  I scratch so bad sometimes that I end up pouring with blood, when I wake up in the mornings I look like I have gone to bed with Freddy Krueger, it is that bad!! To be honest, I think it looks worse than it actually is, it has really got me down and I feel it must look so unsightly, not the case as I am constantly told. One thing that exacerbates the scratching is whenever I have to deal with a stressful situation, could be at home but mostly it happens at work, it is truly horrible and very embarrassing! I have been to the Doctor about this, had blood tests but it does say that some of the side effects that each of these drugs can cause are some form of itching, well thank you very much!  The thing that bothers me is that they may have to take me off  Modafinil and put me onto something else, we shall see!  One of the things that I really miss because of this ongoing problem is having an Indian Head Massage!  It is a cross between me thinking that it must be horrible to massage my head and also a certain amount of discomfort to me too, so I have reluctantly decided to give them a miss until it is sorted out once and for all but I will be having them soon, that's for certain!

                   So, on one hand, the drugs that I take are marvelous, in pain relief and in fatigue management and when they have sorted out the side effect problems, all should be great.  Obviously, the drugs that I have had problems with are NOT the case for everybody, one mans meat etc, etc, so just because they are a problem to me, others are fine with them, I cannot emphasize that enough!

                   At this time of writing this particular chapter of my blog,  we are now in the period of Lent and for quite a few years now I have given up, for forty days, something that I am very fond of!  So I have given up chocolate and biscuits and I must be honest there are times already when I found giving up cigarettes a lot easier!  However,  I shall get through it like I always do and by the time forty days is up, at least I would have lost a few pounds in weight, so it can't be so bad really, can it!!  In the meantime, I could murder a packet of Jaffa cakes or a Mars Bar, so God help anyone who winds me up, I'm a man on the edge for Christs sake and my head is itching too, now that is such dangerous thing, a potential shit storm in the making!!