An unwelcome Visitor. (The Conclusion)

          None of us like this 'Bastard Thing', none of us like what it has done to us as individuals, more to the point, what it's possibly going to do? You can't predict what is going to pan out for you, so we have to like it or not, take each day as it comes! Not an easy thing to do at the best of times, especially in my own case,  but obviously, my own story is  far from unique and there must be plenty of you out there who have a tale to tell!
            As it is well documented, it is no friend of mine, it never was and I am afraid I don't think it ever it will be. This mutual hatred is what has kept me going this long, of that I am in no doubt but recently perhaps, even I have started to mellow shall we say, not crumple, heaven forbid, just mellow a bit! 
      Let me explain:-
    Recently at work I met a young man, purely in a heterosexual way you understand (and anyone under 50, to me is young!) we were having a good chat, putting the world to rights and then the subject of lazy shits who make a habit out of swinging the lead entered our conversation. We were yakking about people at work, a very large workforce it has to be said, I come into contact with all forms of human life during my working day and then we threw the net wider and ended up talking about people of that ilk in general not just at work. Both of us agreed that there are some people who just get away with murder; these are the rotten bastards who spoil things for people that really need help. We laughed and became angry at pretty much the same things, you must understand that we had never met before but we just seemed to be getting on I suppose, there was some really good rapport between the two of us. We were just about to finish having our chat and he just stopped and said to me,
    "There are people that really piss you off aren't there"
    "Ain't that the truth, especially the bad back and snotty nose brigade" I replied'
    He stared at me for a few minutes and then said
"are you that guy who writes a blog about M.S? ... you are aren't you...you are Martin aren't you?"
               I was a bit taken aback for a second, was his attitude towards me going to change? I immediately became defensive, not one of my best qualities and then just thought, what the hell, he seems a genuine enough guy so I replied that I was the very same and much to my surprise he then held out his hand to me and said that it was nice to meet me and then he just came out and said,
    "We are in the same boat, I've got M.S too!" A bit of a strange one, I was not too sure how to respond and on a rare occasion in my life, but as crazy as it sounds, I was genuinely pleased that I was no longer the 'only' one at work, it felt like after all these years, I could share my burden with somebody who knew what the fuck it felt like!!        It turns out that he had visited Occupational Health at work and although my name was not mentioned, he was aware that there was someone else within the company who had M.S and that that person wrote a blog. More often than not, it is someone's wife or brother or sister, or they know somebody who knows somebody, that type of thing but never before have I come face to face with a colleague!
       As I have said so many times before, I am SO judgmental about others especially when it comes to M.S but on this occasion almost at the same time,  we both said how well we both looked! He had not been diagnosed as long as I and he was not sure what form of this 'Bastard Thing' he had and he was still waiting confirmation. He then said he liked my blog, and he laughed that I sound in 'real life' as I come across in this blog, I think that was a compliment, but I apologized for my 'choice' language and  I thanked him and then we proceeded to 'compare notes'. I have only seen him a couple of times after that initial meeting, and I recently heard from a colleague that he has transferred back to our main assembly plant in Oxford but, the point I am making is this, he is dealing with it in a brilliant way, carrying on with his life, running marathons for fucks sake, he goes to a gym and he keeps himself fit, don't you just hate that, he may have his share of demons but he seemed to be a forward thinking guy and he keeps the 'negatives' well hidden!  

        Coming face to face with another M.S'r  like him, especially in a work context, has made me think. He is making the most of a bad deal like me, but unlike me, he appeared not to be an angry, cynical person, or at least not 'openly', I am a nice guy I really am but I could be better and I don't want to let this thing hold me back any longer, I suppose he is just an OK Dude like me!

         Now more than ever, I have come into contact with other 'club members' on more or less a weekly basis and unlike me, virtually all have in some way shape or form, accepted having M.S! Some have almost straight from the outset, some when it was obvious that their own symptoms were getting worse each time they had an episode, but all had decided that they had no choice and so acceptance for them was a lot easier to deal with. This is an issue that has often made me look deep within and question myself. How would I be if I allowed myself to 'come to terms' and yes, even go as far as to accept this Bastard thing!  Now that my friends is a tough one to answer, If I had come to terms with it, would I be better at dealing with it, don't know, would I be a different person to the one I am now, who knows. My wife thinks that I would be a nicer person, not that I am a total shit but perhaps more like I used to be. I know that I would not be so hard on myself, perhaps I would not be continually questioning the way I do things, the way I deal with certain issues, the way I am with some people. She is forever telling me that until I fully accept it, I will remain an angry on the inside, I suppose I am still very much an angry and a bitter person.

        Of course, she is right on both of these things, but just scratch away at those layers and you will find sadness too. It is the sadness that I don't like having to deal with, I don’t like facing it, I don’t like having to, I know life will never be as it was, I certainly can't put it right but ultimately it is me that is in charge of the person that everybody else sees! There are times, thankfully when I am on my own, the sadness really hits me even now and it can be so fucking 'crushing',  usually with a glass of red in my hand, meeting a person, lyrics to a song or words from a book, could be anything, fortunately the feeling does not last too long, but I am guilty of sometimes wallowing in it, being on occasion a bit too morose.
      I admire those that have faced up to and indeed been strong enough to ‘accept’ their lot.  Even to this day, I still feel  that I am not quite a fully paid up member, even after all these years! Probably because I am still able to work full time, maybe because I manage to keep a lot of M.S symptoms at bay, some of it is dealt with by some of the medication I take, maybe my 'stubbornness ' is a great help too, I think so, maybe the men in 'white coats' think otherwise, but hey, what the hell do they know!

          However, would I be in a different place if I had accepted the diagnosis all those years ago, I just don't know and probably never will? I still have feelings of guilt, should I be more active in the M.S world, should I engage myself more with M.S? The truth is, although I have met some lovely people in the last couple of years and I am SO lucky to communicate on a special kind of level with them, please don’t misunderstand me, I don’t wish to get all hippy-trippy on your arses but I speak and email with some beautiful 'kindred spirits', an Angel, a Fairy and the odd Witch or two (yes that is what I said, keep up for Christ's sake!) they know who they are, they are special to me and I cherish their friendship.  I am nowadays very comfortable with those friends of mine that just 'happen' to have M.S. who will talk about other things as well as M.S, they don't want to be talking about this 'Bastard Thing' ALL the time, and neither do I,  I don't want to read about it ALL of the time and neither do they.

      I  know that, without doubt, allowing myself to mix with other MS'rs was one of the best things I did, I needed to, it helped me to come to terms with so much, by no means all but for helping me to step over that line, I will always be truly grateful. One of the best things I have ever done is to do this Blog, to be able to unload some of my bullshit onto you guys, laying open my soul and hopefully sharing part of my journey with 'This Bastard Thing'. The feedback has been truly humbling and if my tale has helped in some way, you are truly welcome.
      So,  after a great deal of thought, I have decided that 'the Unwelcome Visitor' is with me forever and my story has now come to a kind of conclusion, it's not a case of me throwing in the towel, I am certainly not giving in to it, no chance of that happening but I shall 'bite' this particular bullet for better or worse, and just try and get the balance right.

      The next time I visit M.S via the medium of 'blogging', who knows, it could be to let the world know that I have at long last been called upon by a 'WELCOME visitor'!
       
Right then, plenty of other stuff I want to blog about and when you 'blog' it's a bit like having itchy eyes, you've just got to rub 'em!...and my other alter-ego, 'Sleep That Burns' has got plenty to blog about, so I shall still be about !
       
     So, I wish you all well, thanks for joining me along the way these past couple of years, don't forget to question everything that the 'white coats' tell you, make sure you keep drinking plenty of water and Red wine, don't forget the Red wine, 'cos it is good for you....oh yeah, and make sure that you keep 'spitting this devil in the eye' at every possible chance you get.
                 

'Bombs Away Dream Babies' XX

(Doc Martin has left the building.....)

Now YOU, listen to ME!!

     A few months have passed since I last did anything on my 
'An Unwelcome Visitor' blog, perhaps the break was good all round because you may have been getting thoroughly pissed off with my ramblings and I was definitely in need of a break from all things M.S.  
         Unfortunately, however hard I have tried to distance myself from 'This Bastard Thing', I can't, like the rest of us, avoid going any great distance (no pun intended) without thinking about it, it is not an  easy thing to do, it is always there, it always will be and it will always be working it's 'unwanted' magic.

             During these past couple of months I have had some run-ins with the powers that be, in my case the ones in the WHITE COATS!!!  My feelings towards these people, by no means all of them, just a few in my case,  have reached a bit of a low and when you meet one who thinks he can make sweeping decisions that have the potential to undo all of the good that has been done thus far, then you go on the attack!

      It has taken me a long long time to deal with the fatigue issues that come with having M.S., to find ways of addressing cognitive and memory problems and when the opportunity comes along where I can try medication that helps me deal with all of the aforementioned, I have always been a willing host, never a problem, bring it on. So when a pill comes along just over 18 months ago, that changed everything for my family and me, I refer to Modafinil, or as far as I am concerned, the wonder drug, my world changed almost overnight. I could now go through a whole day without the clawing effects of fatigue slowing me down, I am able to think clearer, my brain is sharper, not like it once was but more positive in the way it processes and deals with information.  Now let's get one thing straight, I am no fool, I am under no illusion that these 'gifts' are medically 'enhanced', but I DON'T CARE, they have enabled me to lead a 'life', enabled me to remain working, to be as normal as possible, for that, I am truly grateful.

 I am fully aware of any potential problems that there may be with my heart along the way, although nothing has been proved,  I have ECG's and BP checks and blood tests to keep an eye on this and if things in that department are obviously not going right, then I will mention that to my Doctor. Those of you who have come to know what I am all about are well aware that I was unable to work for long enough with two lengthy 'episodes' in the past, so I want to stay working for as long as I can and if I were to be perfectly honest, dying from a heart attack frightens me far less than spending the rest of my life in a wheelchair and being unable to do things for myself.  As I have often said in the past, please don't judge me on my thoughts about my life, they are mine and mine alone, I would not dream of saying they are the way we should all think, I know I have said that before but I mean it, yours is yours, mine is mine.

       On the morning of the visit with the Neurologist, I was in a slightly anxious mood, things as far as I was concerned were going along  just fine and I did not know the person I was about see, he was as new to me as I to him, little did I know that in a few moments, my world was going to be halted in it's tracks!  On reflection, I should have realized things were not going to go well when no handshake was offered to me and hardly any eye contact given, "WARNING,WARNING"!! 
    The guy had obviously, well to me anyway, not read my notes, if he had, then he would have known more about me and my history with 'This Bastard Thing'. Look, if I had gone in there with an in-growing toe nail or some mundane everyday kind of ailment, then his time is a bit of a premium, in out, next! However as we all know M.S is a disease, an incurable illness, we are a pretty pissed off group of people and so a little bit of eye contact would not go amiss, now would it!!

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MESSAGE TO THE NEUROLOGISTS OF THE WORLD

' Learn these rules and there will be no problem!'

RULE No.1
 You the Neurologist must go out of your way to make you/me/us, feel comfortable about being in a consulting room.!!

RULE No.2
 You the Neurologist must have read our notes BEFORE we arrive!!

RULE No.3
 You the Neurologist must be understanding and reasonable to our situation and our requests!

RULE.No.4
 You the Neurologist must look at us, talk to us and treat us as the human beings that have just walked into their office, NOT as a number on a list!

RULE No.5
You the  Neurologist are NOT God, if you behave like God, we can always ask to see somebody else!

A REQUEST!

       Of course I bow to their superior knowledge on 'This Bastard Thing' but my friends, they are the fortunate ones, they are the lucky ones, WE the PATIENTS are the ones who have to live with
'This Bastard Thing' not THEM!

       Am I being too touchy about my recent visit with the Neurologist, was I not going in with an open mind, was I not giving enough 'serious' thought to the things that were being laid out in front of me? Well, having been told to stop taking Modafinil because :-

1. It is not recognized as a drug that relieves M.S symptoms and is only recognized for the treatment of Narcolepsy! - 
Why prescribe it to me in the first place!

2.It is potentially bad for my heart! 
I am fully aware of that and have my heart checked accordingly!

3.There is no proven benefit from taking it at all!

                   WELL EXCUSE ME!!!

        So you can imagine how I felt being told to stop taking Modafinil straight away and start taking Vitamin D instead!  How the fuck could a 'food supplement' manage my symptoms !! Well my friends, the rug had well and truly been pulled out from under my feet and within a few days of 'doing as I was told', things started to deteriorate, fatigue came back with a vengeance, cognitive problems started to re-occur more often, my speech became noticeably worse as did my swallowing, I was fast going to hell in a handcart!

******************************************

Not for everyone!

        I agree and I do appreciate that Modafinil is not good for everyone, I know some  people do not gain any benefit from it at all, and some people only gain a little, but with me, I gained back my LIFE and I was not prepared to give that up at any cost!!  Ok, so I tried Vitamin D as instructed, and it made me nauseous and gave me a blinding headache, was I taking too high a dose, was I taking too little, could this have been because  my mind and body had got into such a bad place because of giving up Modafinil, maybe, who knows, or was I so angry with the Neurologist for not listening to me!

      

       After those few days of anguish and heartache for me and my family, I decided to go back onto Modafinil and finish the supply that I still had left and almost straight away, those missing parts of me came back and with these came a decision from my wife and I to challenge the decision  and through help from my Doctor, a second consultation was to be arranged with another Neurologist!

CHALK & CHEESE! (good Doc, bad Doc)

         It was just over two months after seeing the first Neurologist when I was given a date to see another, in one sense I really wanted to but there was part of me that was really worried. Was it going to be a waste of time for me, was this one going to be any different from the first, was I going to have to rethink my whole future, that may sound 'dramatic' but believe me, that is how I felt.  The morning came for my appointment, I went into work as usual, mostly to take my mind off of what was possibly in store for me, well, for us really because the outcome would affect my whole family!  While we sat at the hospital I said very little, my wife tried to keep me talking and all I could manage were the odd yes and no, my mind was elsewhere.  My name was called out, not by the receptionist but by a man, I remember standing up and saying to myself, "here we go, this could go either way", we walked  in the direction of the voice and without realizing, I walked straight past the Doctor, if my wife had not nudged me  I would have carried on walking!!  "Are you Martin ?" when I realized that he was talking to me, I stopped and he introduced himself and held out his hand!! Straight away, I thought that this was a decent bloke, from the get go, he was going out of his way to make me feel at ease, so different to my other encounter a few months ago. We went into a side room, sat down and he asked me about myself, it was pretty obvious he knew a bit about me  and soon into the chat he asked me how I thought Modafinil was doing me good!  He then went on to explain about the bad press it had been getting, and did I know why, and as it happened, I did  know of the possible implications to me, obviously I did, I have done so much research on this drug and I think he was pleased that I was aware of the side effects that 'can' happen to some people.  He then explained  that he was a Neurologist whose  main interest is the study of sleep behavior, levels of fatigue and how it can effect people in different ways,  how it can be controlled with medications, in particular and  of great importance to me, Modafinil.  With his help and that of my wife, I filled out a chart which gave him a pretty good idea on my life in dealing with M.S fatigue so far, something I have never done since I have had M.S, as I have said before, all manner of drugs, you name it, physio, acupuncture, steroid infusions but I have never done this test. The test as you may know is an Epworth Sleep Score, it was one of those Q+A charts, the type that when you are completely honest with yourself, you tend to 'big up', make yourself look good, please stop shaking your heads at me, we ALL do it at some time! Anyway, some of the scores have been abnormally high when as in this case, assessed retrospectively and all points to 'secondary' as opposed to 'primary' Narcolepsy. I am so glad my wife was there because over the last fifteen years, I will be perfectly honest, I have subconsciously, or maybe deliberately even, blanked certain parts of my life out, I seem to have conveniently 'forgotten' how bad I once was, all of those bad days as far as I am concerned anyway are now 'locked' away in a box in my head somewhere,  I think it is something all us members of this shitty club have done at some stage, like it or not, there are plenty of the bad parts that we have tended to brush under the carpet, in my case those day's are very much in the 'then' as opposed to the 'now' category!!  After looking at my answers, then going through them with me, he was pretty certain that I also suffer from Narcolepsy which may have been triggered off by my M.S or the other way round, at this stage he cannot be certain which. This was one of those surreal moments, should I be pleased, should I be happy, although I was not shocked as such by this revelation, I was not too sure how to deal with the news at first, I suppose I was a little bit stunned!  Anyway long story short, he is happy for me to stay on Modafinil, because as you may or may not know, Modafinil is readily prescribed for Narcolepsy anyway, he recommends that I should stay on Vitamin D but I should try a smaller dose than I was taking because Vitamin D does seem to be of benefit to M.S sufferers. Also I am to have six monthly checks on my blood pressure and ECG, small price to pay as far as I am concerned.
      When the news did finally sink in, I fell very silent, well for me anyway, there have been many times in my life that I have been overcome with emotion especially during the past fifteen years but when he told me that I could remain on Modafinil, I was SO happy, SO relieved, I shook his hand with both of mine, I felt my life was back in the 'now' not in limbo anymore! I now have met a fantastic Neurologist to go alongside my fantastic Doctor.

       He arranged for me to have a blood/test taken which I gave that morning, this is to check if I have the HLA tissue type which is strongly associated with primary narcolepsy, strike while the iron is hot I suppose, he has also arranged for me to have an MRI scan, my first in nearly fifteen years, to see what changes have happened to the part of my brain-stem which is the part that shows the effects of M.S and also Narcolepsy, which is of interest to him in particular. I am pretty curious about that myself, am I worried, don't know, we shall see what the results will be and I shall share them with you at a later date.

       I came out of our meeting feeling like a different person to the one that went in there, the darkness and the uncertainty that had been hanging about lately had started to lift and my life, our lives could resume properly once more.  Having gone through all of these years with M.S has been tough, a lot of lows, physically, mentally and emotionally but then again all of us MS'rs go through the same, of course there have been plenty of  highs, there have been some good times, it has not all been shit, a lot of it without question but by no means all of it.  I am a very different person to the person I once was, fundamentally I am still a really nice guy, but there have been times when I have been a total bastard, virtually ALWAYS beyond my control and thankfully, not that often. My feelings as we walked to the car after my meeting with Doctor 'Nice Guy' were mostly of total 'relief' but I suppose on reflection it was kind of a bittersweet result, not only do I have M.S but I now have Narcolepsy as part of the deal, a double whammy, 'buy one get one free'. Apart from my wife and girls, and a handful of very special friends, nobody has been  aware of what I have been going through these past few months, it has been tough even just contemplating having my life thrown off course, corny,  perhaps, dramatic, maybe, I don't care, that's how it felt!

      By the time of my next blog, I will have been through the big metal doughnut, shown the results and discussed how things have deteriorated or not inside that thick skull of mine. I honestly can't say that I am bothered, whatever they find out, good, bad or indifferent, it will be more fascinating for the Neurologist to study than it will be for me to look at, it won't turn back the clock now will it! If anything comes from it that means the information can be used in studies of some kind, then they can use as much of my 'DATA' as they want, my brain is their's as long as I get a percentage of some of the royalties (hahaha) I reckon I'm worth a piece of that action and I would love it that  they rename it, the study of this ' Bastard Thing', got much more of a ring to it than 'M.S' don't you think, and it would be so cool if people went to University to study it, get a PHD in it,  see that guy over there, he went to Oxford to study Neurology and he is now a Doctor of this 'Bastard Thing', you're welcome! 

   

        One point I will make is this:-

I know that being reliant on this drug, or any other for that matter is not a good thing long term, but for the moment, if there are any risks to my health I am prepared to run those risks, if I was a young man, different story, your route map on life back then is so much different and as I am not looking for that elusive 'youth' pill anymore, just one that keeps me going, gives some order to my life, wrong as it may be to some, I just say "BRING IT ON"!

             So next time I blog,  I will have seen an updated image of inside my head, what that tells me, Christ knows, I am curious of course and contrary to what my wife thinks,I always knew there was a brain in there........somewhere!
             So until then, be as well as you can, always question what the white coats tell you, they know a lot, but they don't know everything!!!  
                         Bombs Away Dream Babies.XX

An Unwelcome Visitor: Chapter 31

SEX, Me and this 'Bastard Thing'!

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            Now I would bet a month's wages that was a headline that grabbed your attention, I think I am right... yes, right then, I shall begin.  Like most men, I look upon sex as an integral part of life, perfectly normal, enjoyable, that goes without saying, and with marriage, something that with time, that union becomes like a fine bottle of wine, you hope it get's better with age and in our case it certainly did, this must be the same for a lot of couples/marriages but then you don't  bargain for an 'extra' guest thrown into the mix (or perhaps you do hahaha!).

           In the early day's of D/X,  sex is the last thing on your mind obviously, there are significantly more 'important' things for you to deal with, like walking for a start and in my case, to stop vomiting and getting my balance back, Christ, imagine me walking towards you back in the day, sexy fucker or what!!!!  Within time, things started to 'stabilize' and the normal feelings gradually came back, ok, so there have been many hurdles, highs and lows and although nothing like it used to be at first, that particular obstacle in my life, our lives, was dealt with, physically, mentally and emotionally. 

                   However, this part of my life has had some very low points and it severely dented my pride and without doubt, my ego along with my self esteem and as I have said, this caused some moments that have made me seriously worry not only about the physical issues going on in my life but the mental and emotional  issues too.  There have been times since the 'Bastard Thing' came to stay when I have not only felt no physical desire towards my wife and I am sure that went back at me from her too, even the ability to love, the mental capacity to love, not just to be able to 'make love' but to feel love, to express my/our love, my true feelings towards her and her towards me! As I have so often said before, you do become very, if not selfish then very single-minded, your caring starts and ends with you,  I wanted to get better, I wanted to return to work, in a nutshell, Me, Myself and I, I was a man on a very personal mission!

      Once things started to return, it was then that I had to fight like hell to get the other stuff back, this is something that I have fought tooth and nail to get back and this is one of the most difficult things that I have faced, probably because it was such an important part of my life in the first place and to have it taken from me in such a cruel way,  was so hard for me to come to terms with. Rightly or wrongly, thinking of myself as a man who would, was now having to think of himself as a man who did not know if he ever could!    
       This was such a frightening prospect to me and strangely, especially to other people perhaps, this was top of my priorities, this and getting back to work, crazy I know but that's just the way it was! Now I don't want you to think that I was some kind of 'super stud ' or anything, that is far from the truth, no, just an ordinary guy with normal, natural urges/feelings.

              In more recent years some of the medication that I was taking didn't help me at all and it did cause me a lot of concern and worry for a few weeks as I have mentioned before.   Erectile dysfunction is a  very scary thing to happen to any man, especially when you have no idea why!  I mistakenly put that down to M.S alone, I never dreamed that the medication which was on the one hand, helping me but on the other was causing me so much worry and anguish!  During those few weeks, looking back on it, I was probably becoming depressed, not that I would admit to that at the time but when you already feel like a man who has been kicked to the ground, the turmoil that causes is bad enough but when my manhood had quite literally been stopped in it's tracks, well, I felt worthless, I felt ugly, undesirable!  For a man who was in his early forties at that time, I had almost resigned myself to shutting up shop on anything that was even  remotely sexual in my life, that was it, it has been fun but that's it!! 

       Well, I suppose I could have taken up stamp collecting or maybe knitting, I believe a lot of men do that sort of thing...oh shit!!  Ok so it's a man thing but if I were to be totally, 100% honest, this has caused some of my darkest moments, the simple fact of not knowing, was it me, was it this 'Bastard Thing' , was it an age thing!  I knew that I still wanted to have sex, I knew that I still found my wife attractive but what was wrong,  had I turned gay,  no, I still found women far more attractive than any hairy arsed guy that's for sure but what was it, what was going wrong with me!

             Anyway a chat with my M.S Nurse, an appointment with my Doctor, a change to my medication and things gradually got back to normal, not the same but a fucking sight better than they had become, I began to feel like a man again.  I know that with M.S, a man and a woman are dealt such a shitty hand anyway, of course I do, no question, sex and sexuality are certainly some of the parts of our lives that are going to be 'different', not as they were for sure and in some cases, for obvious reasons, the physical side of things ends and probably, in my case for sure, is why I hate this 'Bastard Thing' so much. 

That may sound such a minor thing to worry about in the grand scheme of things and I bet there are some out there who are saying,"so what's your fucking problem", you're still alive aren't you, sex 'aint everything!, Well yes, agreed, very true and as the years advance, there are changes in how we perceive our sex lives to be anyway and I acknowledge that our sexual libido starts to diminish, M.S or not, that's just the way it is, that's just the way life is, that's what God invented the jig-saw puzzle for, to help us deal with those long, dark, sleepless nights for but I still make no apology for my feelings, this is the way I feel about it, sex is such an important part of most peoples lives, everyone has feelings, urges, both physical and mental, so when things start to change before we are ready, it is only natural that you will worry yourself stupid and that worry will only make matters worse for you and your partner/wife or husband! So I would plead with anybody out there,  DON'T SUFFER IN SILENCE, talk to your Doctor, talk to your M.S nurse, they may be able to help you and they have all had their embarrassment gene removed, so nothing phases them, NOTHING!! 

                Having said all of this to you guy's, I have still to pick up and read one of the  many  leaflets that there are available regarding Sex and M.S, perhaps it's just because things are now alright. Perhaps they should be referred to as 'brochures' instead, yeah that's it, a brochure, or even manuals with glossy pictures and it comes in a brown envelope in the post! Sorry if that offends but I have to laugh about it, or maybe I just don't want to have to give it too much thought, not just yet anyway!

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Anger and losing my temper (...or, If I feel lousy, don't go out of your way to wind me up, that's all I ask!)!

A couple of times lately, I have lost my temper and become very angry, each time, justifiably I must add!  It has been at work thankfully and has always started off with a 'sly' dig at me, some shitty comment that I have taken exception to. I start my shift at work at 7-15 each morning and mornings are the time of day when it is probably the most obvious that there is something wrong with me, I am usually a bit 'wonky' shall we say and my limp is more pronounced, so you can imagine how I felt when a colleague referred to me as a 'gimpy twat'!  First things first, he meant no harm by it, he thought he was just being funny and on any other day, I would have laughed along with him but on this occasion, I felt a crappy and I just let him have it, as politely as I could I exploded on him, 
"just fuck off will you, if you felt like I do at the moment, you would be a gimpy twat too, dickhead" and I got the 
"oooooooh, hark at you" treatment, which made me feel worse!

          One of my co-workers could see that I was getting a bit over-heated and bless him, he took me away from the situation and dealt with the matter in hand, for which I am grateful. Later when I got home from work and over a cup of tea, replayed the story to my wife, she started to shake her head and said that I was such an idiot in letting the guy get to me, of course, she is so right! It is no point in making myself feel like shit just because a SHIT has got to me, of course it isn't but it is so hard to do, to turn the other cheek!  Let's get one thing straight, I am not special, I don't deserve special treatment, perhaps I am still too sensitive on certain issues perhaps it's because I don't look like I have an incurable illness and I suppose I still have to retain a little bit of anger because I can't be a 'roll-over and take it ' kind of a guy, I used to be for sure, no question about that and we all know of people who will try and push you as far as they can, the trick I suppose is to not let them get to you in the first place.

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I will finish my blog this week with an opinion that is totally mine and as I'm sure that by now, you know I'm not a big fan of the 'white coats'and I hope this comes through to you all! 

                      DO NOT LET THE POWERS THAT BE PRESUME THAT THEY KNOW HOW YOU FEEL AND WHAT IS BEST FOR YOU!  SAY HOW YOU FEEL, IF THINGS WORK FOR YOU, GREAT, LET THEM KNOW, ARGUE YOUR POINT IF NECESSARY IN THE STONGEST TERMS BUT ALWAYS, ALWAYS, ALWAYS,

STATE YOUR MIND, LET'S FACE IT, IT IS YOURS!!!   


As usual, the thoughts and ramblings within my blog are simply just my thoughts and not plucked from the M.S guide book and as I still have the mental capacity to think for myself, I reckon I shall always be this way! So until next time, be well, stay well and keep well and keep on spitting!

BOMBS AWAY DREAM BABIES. X

An Unwelcome Visitor - Chapter:30

A New Year and a New Blog.
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2015....come and have a go if you think your hard enough!
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       Christ it's now a year since I first decided to bare my soul to you all about my journey with M.S, with such a tentative start, very crudely compiled,almost school boyish but I think I got better, I did didn't I?  There were times when I thought, fuck it, they have got no interest in what I have to say and why the hell should they, so perhaps I am just blogging to expel my own demons! However, the feedback I have received from around the world has been very humbling to me, embarrassing too, I mean, what I yak on about is the truth according to me, but I am only giving my side of the story and it is in no way or neither should it be interpreted as anything other than just that!  

            
               As I have said so many times before, we have all got our OWN story to tell, our own way of dealing with this 'Bastard Thing' and as we all have the same diagnosis, yet we ALL deal with it differently, so think about it, a blogger does not have to make you a Geek with a cane or a Nerd in a wheel chair,oh no, it makes you a REAL person, an HONEST person! There are many things I have talked about that a year ago I would never have dreamed about telling anyone, with the exception of my wife and perhaps a few close friends etc, but because I 'aint got a clue what you all look like and I only know what you want to tell me about yourselves, perhaps  I am far braver than I ought to be when I am thumping away on the keyboard, anyway,my ramblings are just going out there into space and not to anyone specific. My stuff goes out to anyone who wants to have a read and  some of these people I am SO pleased to call my friends, maybe friends with a mutual interest but these are not just my M.S friends, oh no, these are some of my GOOD friends even some really dear friends and some are   really beautiful people, people that I have got to know simply by spewing out my heart and soul every few weeks.

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Remember, just because you have M.S does not necessarily mean you have to pile it on!

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         One thing I am determined won't happen to me this year is to put on weight.  As I am pretty lucky to be able to get around unaided the weight does not pile on to me too much, perhaps a bit around my belly but I suppose that goes with the territory, I am 54 for Christ sake!  However, I am also very much aware that it's bad enough to have this 'Bastard Thing' as it is without me potentially giving myself any further health issues.  I have, rather stupidly been of the opinion that because I have M.S, I am not likely to get anything else anyway and I am sure there are others out there with the same misguided notion, what a crock of bull shit!! 
             So I must keep fit and I will stay fit, I've got to stay fit, it won't be easy because I have become very lazy when it comes to any form of 'regimented' fitness plans!  That is why I like these 'ten minute' plans that keep on appearing all the time, the ones that are designed to fit in around your day, especially if you are still able to work.  Even these still have a hard job on their hands in making me want to do them everyday and also for me not to 'cheat', by that I mean ten minutes MEANS ten minutes, twenty reps MEANS twenty reps, Christ it's no big ask really I suppose and the benefits are more HIT than MISS (in theory anyway!) so really it's a no brainer, I've got to do it and so should you. 

           

            Whilst remaining as active as possible, my job, although the bulk of it is done from a computer in my office, there are also many functions that require me to walk about anyway, to lift and carry, climb stairs and fortunately for me just keep as active as possible! t  I am forever being told off for doing too much, what some say is ' unnecessary' tasks, this my friends is a permanent bug up my arse, they just do not get it, it may be unnecessary to them but to me, it makes perfect sense!  
             Due to the fact that I just don't know what is in store for me each and every morning when I wake up, I have this really macabre thought that one day, I might just not be able to get out of bed without falling flat on my face, rolling over and just lying there like some 'Robbie The Robot' character from a 1950's B-movie, an exceptional  bit of work of course, when upright that is (much like myself) but fucking useless when he is on his back!!(much like myself too sometimes, not ALL the time I hasten to add!)

I suppose the mantra us M.S'rs must work to is:-

IF I CAN, I WILL, WHENEVER I CAN AND HOWEVER I CAN  BUT I WILL BECAUSE I MUST!!

Or end up just like ROBBIE!

   

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               So keeping as fit and as active as I can makes perfect sense but how do I go about this, that is the question?  There are plenty of ways to keep fit, walking for a start but there is walking and then there is just going out for a stroll!  Strolling is fine if I have somebody with me, who just wants to chew the fat, hardly break into a sweat, basically just to take a no hurry, leisurely wander.  This is fine, I will be up for that no problem but that old demon on my shoulder is going to get a bit restless, a bit bored even and why my wife goes mad at me, she want's to take her time, her philosophy is, if there is no rush, then why hurry!  This drives me mental, maybe I will feel like shit when I get there but then again, maybe I won't, I take 'strides' for fuck sake, I don't do 'tippy-toes', my sights are set on where we are going and I mean to get there asap.  
              As you all know, I just can't relax anyway and I suppose that includes while I am walking, perhaps I should have an mp3 player jammed in my ears, hitting my senses with some cool tunes, (knowing my luck I'll probably get hit by a truck)!  So I will have naked ears, far too much for me to concentrate on without getting off on any form of music, sad but true!

      Of course if I was on holiday, I would think totally differently but during the working week, even in the evenings when lets be honest, I have got to work around a timetable of sorts, and stick to a 'form' of timetable when I get home. I have to look at this in a more 'controlled' manner! It is still a case of little and often but I have got to be sensible about it, if I am feeling a bit crap, I won't do so much at home or at work. I know I have take note of what my body is telling me I have got to take it easy, this is no 'sporting injury' that I can just run off or do a bit of intense physio, this is here with me for the duration so I have got to be really sensible about what and how I should exercise. How I am going to stay fit is the challenge and this is going to include more walking, a great form of exercise as we all know but with the addition of M.S, keeping fit by walking will also help me with any balance issues that I may have to face, which is mostly in the morning when I get out of bed! Well, for starters I have got to start taking things easier, start enjoying life a lot more than I do, everyone says that I am still being too hard on myself but as I have said before, I can still remember how I 'used' to do things, that side of me is getting less and less with each New Year but it is.... still there and to a degree, it always will be!

            The very 'art' of this, just keeping things at a manageable level, is something I find such an incredibly hard thing to do, I want to run but I can just about manage to trot, so I will walk faster instead but that's no easy thing to do, if I walk too fast, I may feel fine for a few hours the rest of the day even but I could end up feeling shit the next day, which is no good for me if I want to work, to do my job! So I personally find that by keeping myself moving, stretching and bending and doing it in a sensible way, little and often, so far it is manageable , not all the time obviously and when that happens, I just don't do so much and will just do various exercises from the chair at my desk, pelvic rolling movements, shoulders back, arm stretching and rotating, hands on hips, moving left to right, that sort of thing. I know that some of these exercises have been doing me some good because there are parts of me that ache like fuck!!  So I have adjusted them to suit, asked if I am doing them correctly, if I am doing too many or not enough, all of the usual questions, I suppose it is all about getting the balance right and resisting the temptation to push myself too hard, I think I know by now where that could lead me if I am not sensible!!

        Now I will be perfectly honest, for me personally, doing all of this stuff, may keep me moving, helping to keep other 'issues' at bay when I am at work and sometimes at play but it does not stop the fatigue that this 'Bastard Thing' is so good at!  I am, up to now lucky, fatigue effects me part of my day, it is held at bay by my little 'wonder' drug, Modafinil, without it, I would be fucked, no question, so I respect it, I don't take it for granted and above all, I heed any warning signs and now, reluctantly of course, I think you know me well enough now for Christ sake, I listen to my body and so should you lot too!!  Of course, keeping myself as fit as possible and managing my fatigue is quite a balancing act let me tell you and I won't pretend it is easy because it's not!  Keeping those two in check plus trying to keep my concentration in order, is sometimes quite difficult for me to maintain. The three of them, keeping moving, acknowledging my fatigue and keeping the wheels in my head turning, all things that require a lot of effort from me because it is only ME that really knows when they are failing ME!

           One thing I know that I have got to sort out this year is my attitude!  I know that I do come across as a bit too cynical about too many things in my life and life in general.  First and foremost is my attitude towards the medical profession that I come under, mainly because of my 'sort it out now' feelings towards them. I can't help it, I know it's not their fault, they can only do so much, then the whole thing gets too foggy and mysterious even for them! I am always being told by my wife about the way I show my feelings and indeed my attitude towards them, I am sorry but even now, if it 'ain't what I want to here, I still have this 'way' about me, I might not realize that I show it but I do, my wife will always tell me that sometimes I waffle on when I see the Doctor and other times I don't say enough, maybe it's a bit of confusion, being left with so many unanswered questions, add that to a whole load of sadness and a shit load of anger, none of which does me any good at all, so it has to stop NOW!
      I am seeing the main man (my  'new'Neurologist and it will be a first meeting for both of us)  in February so  I will be doing a lot of listening and being more...open minded, well for me anyway and I will be more of a listener and I won't expect any miracles and I won't be quite so dismissive of what is said to me. I know it is not his fault if he can't tell me what I want to here, let's face it, they never can,  can they!  You never know he might enter me as a Guinea Pig for trials for a new wonder drug or a miracle vaccine, well...... I can fucking dream can't I!

                I think that as I have grown older with this 'Bastard Thing', in lots of ways  I have become a bit more of a  'people' person anyway, to people I like that is! Perhaps part of me has mellowed with age, I was never a nasty person to be around anyway, it's just that I find  I like the company of people that 'interest' me, that sounds so pompous I know but due to the way this 'Bastard Thing' fucks around with your head, the other person has to interest me in order to 'hold' my attention so that  I am  able to 'engage' more in meaningful conversations MAN!, I enjoy a good laugh, a good discussion too and it is not uncommon for me to end up with a skull buster of a headache, usually for all of the right reasons. However I still get defensive about certain things, I will still stand up and question something if I believe it to be unfair or unjust,  I will argue back, if I don't like something , I will say so. This I find, personally speaking of course, to be a great thing to still be able to do, it means that the old gray matter is still functioning, perhaps not as it should but functioning nonetheless.  I suppose I am opinionated about various topics, not just M.S but a variety of things and I do  reckon if I was to ever enter Mastermind and have M.S as my specialist subject,  I would wipe the floor with the opposition, 

Q."Welcome Martin and your specialist subject is.....

A."My life with this 'Bastard Thing' from June 2000 to the present day"!

      So I have promised my wife to be more tolerant of other peoples views, I shall keep my thoughts more to myself and smile and nod in all of the right places! I will perhaps be a bit more subtle in the responses that I give, maybe, that will depend on the mood I am in at that particular moment in time, or the mood that this 'Bastard Thing' decides that I'm going to be in at any given time, it won't be easy, there will be a lot of tongue biting, a lot of polite "ha ha ha's"!  I am under no illusion, I may fall into the bracket of, 'that poor guy with M.S' or 'that miserable Bastard with M.S, neither of which I am going after, so remaining firmly in the middle ground is going to be where I am aiming for and where I want to be because I am fundamentally a lovely bloke and most of the time, people like me and I like me and I am sure that you would like me too, why.....'COS I SEZ SO!!!

       So this  New Year is going to bring us all some new challenges, good, bad or indifferent, we are all going to experience some new emotions. We may be looking forward to it, we may be dreading it but nonetheless these experiences are going to be there for the taking or avoiding, how will we deal with them...who knows. As I have said all along, it's up to us as individuals, we are all different, some of us will be up for anything that this 'Bastard Thing' throws at us, some will just go with the flow and some of us have to give a lot of thought to things that are going to alter the way they take it on, whatever, whenever and however!
        Until next time, keep on spitting this Devil in the eye,
Keep as well as you can so you can stay as well as you can.

        Bombs Away Dream Babies. X