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

CHAPTER:29
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"FORGETFULNESS"! 

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 Er......what! Oh yeah, I had better start to write it down then!!

      Forgetfulness and how you deal with it is a very personal issue, it is something nobody likes to admit to, nobody likes to think it is any kind of problem but it's there and this 'Bastard Thing' loves it when you can't remember, so I suppose we have to address the issue before it becomes a major problem!

            Is it an age thing, would it be happening anyway, I don't know but It annoys and certainly scares me in equal measure! With all of the 'physical' stuff going on, when that shit happens, at least I know where the problem lies and I have to accept that it goes with the territory, so to a degree, I expect that. However,  I still have the hardest job dealing with the 'hidden ' stuff, the other thing that my brain controls and in this case, my memory! 

                      It's not a 'major' problem, well I don't think so anyway, my wife may disagree but I suppose that goes with the territory too, and I know that my marriage is not the only one that has a 'third' guest that goes everywhere with them, if you get my drift!  I am very much aware that on occasion my memory problem or 'reluctance' on my part to admit that it even exists, can sometimes be a problem!  I will always acknowledge that my wife can 'see' through everything I do or say and that has always been the case, then again, I will always say that women are smarter than men anyway, it hurts to admit that but it's true! 




                     When you think about it guy's, a woman can do something we will never be able to do, what's that I hear you cry, fake an orgasm of course, so that alone makes them a lot  smarter than us, FACT! Don't sit there complaining, it's so true! Women, I've said it before and I'll say it again,  I salute you! 

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         Fortunately work is not causing me any major problem, maybe because I devote all of my energies to it, the 'hunter gatherer' in me perhaps?  It is just that  sometimes I seem to have problems with 'life' issues, not all the time fortunately, remembering things that I have done, things to do, how much, where and when and with who,that sort of stuff! As I have said before, taking my pills, their names, what I take them for, how long I have been on them, that sort of thing, this I most definitely find a real pain in the arse!  I know that ultimately it is for my own benefit, I know that they are helping me out but I hate that ritual each day, just taking the fucking things for a start, is a constant hassle to me, my wife goes mad at me because I am just not as concerned as I should be with them, I always seem to have more left each month than I should have, oops!  I just wish that I could go about my daily business without them but that is wishing for the impossible now isn't it!

       So reluctantly I have decided I am going to keep a diary to hopefully help me to stay ahead of the game, to help me keep the 'practical ' things in some sort of order! Yes, it will be like going back to school but now I am older, I am looking upon it from the perspective of an adult, rather than a spotty kid!  It will still require a bit of discipline on my part, it won't write itself and for it to help me out it's got to be done regular and if possible, the same time each day! It's a bit like a bowel movement really but instead of sitting there reading and..........things,  I shall be writing, either way, it's still a shitty job but  it's got to be done!

.............so write it down!!!

............you'll be so glad you did!!!

............Well, I suppose that would be  me, just another one of those 'get round to it' things I should have started years ago!  This is not exactly a 'Book Of Love' more like a 'Book Of Help',  help for me, myself and I.  I suppose it is one major pain in the arse(body) to me but it is my arse (body) and being honest about it, I suppose I know my arse (body) better than anybody else, so I am well qualified to write things down about it, it will help all concerned so it has got to be a 'win, win' proposition, don't you think!

     Just add or change some of the words to this song, I thought it is very apt!

          I suppose, without sounding too corny, it is a 'Book Of Love', it is another way of dealing with myself, liking myself and ultimately loving myself.............yeah, I like that!

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              Doing this will make sense, up to a point, I still don't want my life to be structured around a 'timetable 'completely, not yet anyway. So I will start by listing things in this book that are a problem to me at the moment and this should help me! Firstly, all of my medication details I will put down and this will help me for sure, I have got to be more 'vigilant' shall we say, I suppose it is a bit 'clinical' perhaps but it has to work and above all else it will help me! I will write down dates, however trivial they may be, as we all know, they are not trivial at all, especially if you forget them, they certainly are not trivial when that happens!!

         This is such an important thing to do from now on, especially when it comes to  having appointments with your Doctor, Neurologist, physio, just about anyone who is there to help you!  It took me years to understand that this'Bastard Thing' likes to juggle all of the facts you try and keep in order in your head!  The bottom line is that when you are asked by the 'white coats', you tend to waffle, you blag, sometimes, let's be perfectly honest, you even just plain old  bullshit, so that,  in my case anyway, I can just get the fuck out of that office, as quickly as I can before my 'weaknesses' become apparent!! 

     The weakness I am referring to, one of the things I can get SO defensive about, is of course my memory! So keeping some form of diary can only be good for me and all who I come in contact with, it 'ain't science, it's simple and yet so effective! If it helps me and certainly helps the 'important' people that I have to deal with on occasion!  I must be honest, by me writing down the names of the drugs I take, certainly helps out when I go to the Doctors, when I say some of their names out comes one of the big old books and he starts thumbing the pages or better still 'Google's' it, he is a G.P for Christs sake not a specialist in M.S but I can't help but snigger!

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Just when you thought it was licked.....Sleeping issues!

      Apparently, I have been sleeping(or not!) terribly lately, and I don't know why! All I know is that I seem to be taking ages to get to sleep because I am still awake at least  for two or three hours after lights out!  I know that the nap I have when I get home from work, usually between five and six o'clock, and I must point out, never voluntarily,  is giving me neck ache, maybe because I sit on a settee instead of go for a lie down, perhaps that is not helping! I still make a concerted effort 'never' to go for a lie down, don't know why but I would much rather have a sleep in an armchair,  I have always been able to nod off 'easier' in an armchair, maybe it's because I slept for so many hours in the early years of D/X, maybe I have made a 'subconscious' vow that I will never return to that 'state', maybe I am shit scared about how I am going to feel when I wake up!!  Whether or not that is purely inside my own head or not, I don't know,  what I do know is that I am so out of sync with a proper sleep pattern, I think I have forgotten what or how a good nights sleep should be! What I do know is that I sleep very 'deeply' but not restfully or peacefully if that makes sense, I know that because if I ever go to bed feeling like shit and I wake up feeling just as shit, well then, it don't take rocket science to tell me that I have not had a 'good' nights sleep, just that I have been to sleep for a few hours, usually shouting and lashing out at the thing we all love, this 'Bastard Thing'! Whatever it is, in whatever form it takes, I will always lay the blame at it's door, it can't be anything else, but if it is, one day, when I find out,  i'll let you all know (hahahaha!)

              It is because I am rambling a lot more than normal in my sleep, my wife is quite often woken up lately by the sounds of me getting very vocal, usually very angry too and she is getting quite worried, not for her safety but for my health! I'm not unduly worried about anything in particular, or at least I don't think so, home life is fine, work is fine, as I have said previously, I have now made a determined effort to release the baggage that I have been dragging around, perhaps it is that, there is still work to be done and perhaps I have not let that go fully just yet, perhaps I am still a bit tangled up with my own beast of burden, perhaps at the moment I am still juggling to many balls in the air,  I reckon I am still a work in progress on that score but I 'aint turning back on my decision!

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             Christmas and 'Ye olde Bastard Thing'

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                  It's here once again, not my favourite time of year these days, although it used to be without a doubt, from a kid right up to um................oh yeah, that would be June 2000 wouldn't it!!   One thing, or should I say, one of the things that this 'Bastard Thing' has done to me is  to make it very hard for me to really enjoy the festivities! Not so much on a 'physical' level, Christ I can still rip a present open and I can still drink a glass or two and pig out with the best of 'em, no problem there but I am unable to really 'let go' and enjoy Christmas the way I used to! When I am with my family and friends I always try and put on  a pretty convincing 'facade' and I think I get away with that but it's not quite the same, I suppose it will never be the same, so I just have another glass of wine and perhaps another! It's not that I am a total piss-head, it's just that at this time of year, I get a bit maudlin especially about the 'old' me, perhaps I just raise a glass to the memory of............ 'me'!

           I try and do all the usual's, I write the cards, I hang the decorations, I go shopping for present's and I do my own wrapping, all that you are supposed to do but there is always something missing!  I know that the older you get, the magic gets less and less, after all, it is aimed at the kids but it was not so many years ago that I still enjoyed Christmas! One of the simple pleasures that Christmas always gave me was late at night, after I had finished all of my wrapping, be on my own just sitting and staring  at the glow from the lights on the tree, just me, my thoughts and a glass of red!

                   It's just that nowadays, that feeling just 'aint there anymore! December should be such a nice month of the year and in so many way's too, it's not a 'crime' for me to be seen letting my hair down (especially if I had some!!) but I just feel as though I cannot fully embrace the whole season, I want to, by Christ I want to and I will again I'm sure, someday, maybe next year, i'll get back to you on that one!

                     I would love that feeling to come back and restore  me to the person I was and as I have said so many times before, compared to other M.S'rs, I am still so very lucky but a lot of my fellow gang members seem to be able to look forward to the Christmas Season and I genuinely envy them, there are those who  really enjoy it and for those few day's every year, they forget their problems and make sure that they do enjoy it! My family and my friends all tell me to forget about things for those few days of the holiday's and just eat ,drink and be merry and of course they are so right!  I have got to kick all of the bad thoughts, all of the negativity that I keep hanging onto and I know that it's not just for Christmas but into the New Year and beyond, it has got to be the way and I know it is the only way, so in order for me to deal with this 'Bastard Thing',  in fact for ALL of us M.S'rs to deal with it and life in general, with a New Year  just around the corner, what better time, we have to ditch all of the crap that we drag around with us because once all of that is gone, what is left is still, for the most part anyway, is me, you and us  and we all have to just say to ourselves, "well, I like me, I know I am not totally the same as I was but fundamentally, it is still me and of course it is still you, it is still us",  just chip away at the armor that some of us wear and you will see that! Ok, you want to be liked by other people, of course you do, just the very thought of going through life and finding out that most people think you are a right shit, the sort of person that creates mass groaning whenever you appear, now that must be awful, having this 'Bastard Thing' is bad enough but to be a universally disliked person, fuck that, that has got to be the icing on the cake as far as M.S is concerned because quite simply, it has won, you are no longer the person you were, physically of course but mentally, you have become a horrible, bitter and twisted git!!!  The thing you must do in order to retain the 'good' bits about yourself is quite simply to start with yourself, I can speak from experience on that one for sure and to start to like yourself again is a very hard thing to start doing all over!  I don't mean to be smug or to be vain, that will certainly NOT endear you to others, I mean a much 'deeper' form of 'like', whether it is emotionally or even spiritually but until that day happens and you start to like what and who you see in the mirror every morning, you are definitely in a form of limbo!  The really disturbing thing is, you may not even be aware of your 'change' of character, I suppose what is really needed is some sort of 'life' makeover, definitely  it is a completely new 'mindset' and nobody can do it for us, it has to be done by us as individuals! Sure they can give you the M.S guide books, sure they can give you the M.S tools to work with, the diets, the exercises all of the chapters that go in the M.S book, all of which are essential in taking it on  but it is up to the person to choose how they wish to proceed with it because your mind has got to be in the right place for the other stuff to work!  Bits of it will work for sure but in order for us to gain from the whole package, you have got to be 'SO' single minded, get everything in order 'upstairs', be able to think clearly, to think positively!  It may come across as selfish but I think you have to be single minded at the very least, it is such a 'solitary' condition as we all know, it's not a race, none of us can be winners unfortunately and as we all know, it does not give a flying fuck who you are, what you are or even how clever you are, it takes hold of you regardless! The diversity of people I have met in my years of diagnosis just goes to show me this, our lives before may have never crossed paths and we will, for the most part, never ever meet in person but at the end of the day, we are ALL the same, there is  no pecking order, nobody is a better person than anybody else, NOBODY, we are all non-paying members of this club, this special club!!  One thing that I can now do without hesitation, embarrassment, reservation of any kind, is to look the person that I am in conversation with, right in the eye, without flinching, just look 'em right in the eye and hopefully they will feel the same, and just enjoy being in the company and having a real good talk,  with a 'friend'!

           Right then, time to say goodbye to 2014, for me personally it has been a year of various feelings, good , bad, interesting and even seismic on occasions for sure!!  I will try and enjoy the festivities, perhaps not quite the way I used to but enjoy it nonetheless!  I hope you have enjoyed some of my ramblings, they have been a truly 'cathartic' experience for me and I have enjoyed doing it, so let's see what 2015 will bring. I 'aint in the game of making any New Years Resolutions, I suppose that like all of us club members, perhaps we all have New Year 'Hopes', maybe 'wishes' but definitely 'hopes' and the odd 'dream' or two! 

  So just keep hoping and dreaming and I wish all the VERY best wishes to you and yours, save up your spit 'cos this Devil 'aint going away anytime soon!
     

 BOMBS AWAY DREAM BABIES. X

(Perhaps not a Christmas song and I am certainly not religious, perhaps it is fitting for the time of year, maybe, dunno, whatever!)

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An Unwelcome Visitor : Chapter 28

Some people, really make you think long and hard about yourself!!
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Light 'IS' at the end of the tunnel, how you see it and how you choose to deal with it is down to you, if you want things in your life to keep you where you are, that's up to you, if you don't, cut the rope and just go for it, however you do it, just do it, we only get one crack at this life, no re-runs, so no more excuses!
I did for too long but not any more!

M.D.L.October 2014

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        Hello my friends out there, since last we blogged, I reckon I have kicked them old blues into touch for a while, so lets just say, I am a lot less 'clouded' up there, I'm thinking a bit clearer and with more purpose than of late!  I still stand wholeheartedly about what I said about being a bit reckless once in a while, that 'aint gonna change, come on now, I have my own set of standards to maintain!  It's just that I have heard certain things and met certain people recently, who for a moment in time, have taken this miserable Bastard out of his body and made him sit opposite himself and have a real good look and 'discreetly', compare himself with others and more to the point, try and decide where do I go from here!

     

         Every Friday I make a visit to my Therapy Centre, the place that I avoided for so long, too long but now it is a place that I look forward to going each week, it's the place that I feel that I now belong, it took a while and it took a long time to lose the 'stranger in town' feeling, obviously this was purely in my own head of course! Anyway cutting to the chase, a few weeks ago my wife and I went to a quiz night organized by one of the main local companies that actively help the centre and it was my first time at attending one of these events, for whatever reason, our paths had just not crossed, or had I just been 'conveniently ' busy before, probably! We arrived and were asked what team we were in, we looked at each other, shrugged and fortunately for us we were pointed in the direction of a table where two couples already were sat.  Introductions were made, Julie and her husband and Martin and his wife (as you know, all of gods nice people are called Martin) and we sat down, the strange thing was, M.S was not even mentioned, at least not to start with, so there were no feelings of awkwardness, no comparing of notes, nothing, it just had the atmosphere of a quiz night!  The first couple of rounds came and went and it was then that the main 'vested interest' for all of us was brought up, "so how long have you had it then", I was asked and from that second on, the guard was down and I felt the weight of this 'Bastard Thing' begin to just leave, I began to relax and Julie and I began to have one of the best, informal conversations that I have EVER had with anyone about M.S, even the guy's in the white coats at the hospital could not hold a candle to our chat!  It was honest, it was blunt, so matter of fact, it was funny, it was emotional but for me, it felt more than anything comfortable, it felt right, two members of this shitty club we are all in, two people who had never met up until then, just having a chat, a very nice chat!

         What was equally as good as far as I was concerned was the fact that my wife could hear from another M.S'r, the things that I have mentioned about for years, the aches , the pains, the mood swings, the emotional shit storm that you go through, the forgetfulness, the cog fog, the obvious and the not so obvious stuff.  It's not that she never believed me, I think she gives me some credit, it's just that I felt it was so good for her to hear it from a stranger to us both, that these things are very real, it's not just me!! A truly great night was had by one and all and the first of many more to come I hope and a big up to Julie and her husband and to Martin and his wife for making what initially for me could have been a potentially very awkward evening, into a great night, thankyou so much.

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           As I blogged last time, I had definitely gone and wandered off the path, wherever the fuck that path is taking me, was I beginning to feel unwell, no I don't think so, I'm pretty sure that was not the case, after all of these years, I think I know what to look out for! No, I think that there was a more 'cerebral' thing taking place,  I could not put my finger on it at first, I knew it was something deep within me, I was beating myself up so much, as I said, I was down, I was sad, I was angry, I was generally just feeling sorry for myself!  As we all know, when you start feeling sorry for yourself, a lot get's kicked into touch, you tend to lose your focus, sometimes quite literally of course but that goes with the territory, by that I mean my eyesight, the physical act of seeing and looking was getting a bit tough for a few day's, thankfully that shit only lasted very briefly! The other 'focus' I mean is a whole lot  more than using the eyes in your head, I mean to look 'within', deep inside to maybe see what is going on in there, the 'focus' I am getting at is the kind we all sometimes lose, I think you know where I am coming from!  This focus  is basically an 'umbrella' title for what is usually a whole load of 'stuff'!  These can range from personal issues, by that I mean our own 'well being', whether it is our physical health, our mental health, our relationships, whatever, as a rule, you let one slip and it's not long before the rest follow, get the picture, oh yes, I think you do!

I'm not a big fan of 'profound' statements or sayings, I always tend to think, a smart ass must have thought of that baby, however the one above caught my eye, 'cos it's true, 'cos it's real, 'cos it's simple,  yet oh so effective, goddammit!!
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Staying focused is probably the hardest thing that an M.S'r,  any M.S'r has to do, it's a bit like having a beautiful garden, to keep it that way, you have got to keep working on it, on one hand, a labour of love and on the other, a fucking pain in the ass! Both require total focus from you, both you can get help in various forms but ultimately, it's down to YOU!

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Another of those 'wake up and smell the coffee' moments also happened to me recently and it was one of a culmination of incidents that made yours truly, really look deep within and possibly 're-evaluate' me and my life with M.S!
On a recent weekly visit to my M.S Centre, I went through a bit of a 'profound' moment, yes I no that sounds really pompous, well for me anyway but that is a very apt word for this particular incident!  I try to arrive an hour earlier than my usual visit to my therapist in order for me to have a chat with fellow members!  It was busier than normal, a lot of unfamiliar faces to me  at first but I eventually found someone I new, sat down and started to feel more comfortable and more adjusted if you know what I mean, I think you do, in my case, not 'sitting' comfortably, being comfortable 'upstairs', in my head! During the conversation with my friend Rose, I became aware that a lady on the table in front of me, had turned around and was listening to our chat!  This did not bother me in the slightest, as you may know, I wear my heart on my sleeve all of the time, join in, the more the merrier as far as I am concerned, she then proceeded to 'bounce' her chair near to us in order to join in!  This was great, come on in, fill your boots madam, fortunately for me, Rose new who she was and she proceeded to introduce us, "Martin this is Tracy and Tracy this is Martin"! I must be honest, I had heard her name mentioned a few times before but we had never met in person and by all accounts she had been really knocked down with  this 'Bastard Thing' but was now on her way back up and by Christ was she happy about it and she wanted to tell me so much that things in her life were looking so much better!!  I must be honest, at first I had a bit of a job understanding her, she so wanted to tell the world that things were better for her, I found it hard to understand her because  she was speaking so fast, I was glad that Rose was with me because she seemed to have this uncanny ability to understand what Tracy was saying and in turn, let me know what was being said.  It was not too long before I began to cope and follow what was being said and then,  it hit me, like a smack in the mouth, 'I' used to do that, I would speak too fast, people would have difficulty understanding me and I know for a fact  that it used to annoy the hell out of me because I would always know what I was saying and YOU would be the fucking dumb ass for not understanding ME!!  So I am pretty sure that Tracy must have thought I was a bit of a dumb ass for initially not grasping what she was saying to me, fair enough, she had me bang to rights!!
The single most noticeable thing that came across was she was SO happy, she was so happy that the physio she had been doing was now  working, she took great delight in showing me that she could stand up with the greatest of ease, she did this demonstration so many times for us to see, we had to tell her to slow down because she would wear herself out!! 

      Here was a woman, who despite this 'Bastard Thing' doing it's best to mess up her whole body,  in fact her whole.......everything!  She was now kicking back at it, she had been to the bottom and was now coming back up!  She took great delight in telling me that her  private life was good, how much she loved the really cool jacket she was wearing, how much her house was becoming how she wanted it, everything about her was 'good', her beautiful smile and her constant 'thumbs up' was fantastic, this was a woman who by all accounts had been pretty down but now she was just the opposite, it was lovely to be in her company for part of the afternoon albeit for only half an hour but that brief time certainly made me think long and hard about myself!  For starters, her happiness and her pleasure was so infectious and for this not to be able to come across to anyone, they would have a heart made of stone and no soul! I only hope she did not think I was the fucking taxi driver like so many seem to do, killing time waiting for his next collection, I am getting so paranoid about that, I mean, do I even look like a taxi driver!

  

There lies the rub, do a lot of people still think I am not even one of them, do a lot of people still think that I don't know what the hell I am talking about, should I be on the one hand pleased, or should I be annoyed that a lot of people I meet still think I look ok?  When I tell this to family and friends, they virtually all say the same thing, that I should be so pleased! Although I am getting to grips with that notion, I cannot lie to you, it is still something that I find hard to deal with, stupid I know, perhaps in a strange way, I still feel so guilty, especially if I am talking to someone who is in a far worse condition than me and they have been diagnosed for only a few years and I am walking about!  Maybe it is just me, I don't know, still need to work on that one, I'll deal with it as and when.

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           I still even now think to myself sometimes when I am at the centre, I still  think I am a bit of a fraud, sometimes I perhaps think I should be a bit more 'low-key' than I am, perhaps I should do more listening and just keep quiet, I don't know!  I do a lot of listening anyway, I think I do but I will talk about it if called upon for my opinion not for advice, two different things entirely! Maybe you can understand where I am coming from, or maybe not, am I being to hard on myself as usual, should I just allow myself to go with the flow, shut the fuck up and join the party!  I know what you must be thinking and I don't blame you for it but it is still so hard for me to lower my guard and just be who I really am!  I still feel it is such a thin line that I am walking on, usually when I do my weekly visit to the centre, on one hand being seen as 'Martin' the nice guy and then on the other as 'Martin' the guy who is a pain in the arse, Christ I would so hate that to be the case! This is a dilemma that I can deal with when I am 'away' from the Centre and all of my M.S peers, without any problem, I am referring to my 'work life' of course. I am far more of an 'abrasive' character,  'nicely' abrasive I might add, who has no problem holding my own against my work colleagues at all, no question!  However when it comes to exposing the 'real' Martin, going out on a limb, being completely natural, warts and all, I know that I am 'still' holding back something of me!  What am I scared of, what is the problem, I am only kidding myself, nobody else is bothered and that is so obvious and why should they be, they never knew me back in the day, as far as they are concerned, I have got nothing to prove to them at all, period!!

                    It is the times of my own 'self assessment' of me that I become so aware, that I was out in the wilderness for far too long, such a long time that even now, I am still not 100% honest with myself, I am with everybody I meet, everyone who asks me about M.S, anyone who asks for my opinion, that, I can handle without any problem!  Now that must sound pretty weird, fucking crazy more like but I still feel that I still have to make that last leap and as I have said so many times before, the main thing, the only thing that holds me back from being a fully paid up, life time member of this unique club is my 'acceptance' of this 'Bastard Thing', or is there something else!  Until that day happens, I am destined to be in a form of 'limbo', neither up or down, in or out, just floating!  This is probably why I still, to this day find it so hard, so FUCKING hard, to relax, I just will not allow myself to become fully relaxed, I fight it all the way and the reason is quite simple, I am still too scared to!  I have been seeing Carrie at the centre for well over a year now, she is the therapist that I see each week, I look upon her as the angel who is helping me to try and  relax!  However, even when I see her, I  fight to keep my eyes open, never allowing myself to fully go under her spell (ha ha). I will talk and talk, I fidget, I just cannot lie still, I must be so frustrating, I probably drive her up the wall but to relax, is something that I just cannot do, as stupid as it may sound, I am frightened to, something buzzing around in my mind just will not allow me to completely switch off! The meditation I have been 'dabbling' with has helped a 'little' bit but not completely, I just will not allow myself to relax for any length of time!

            
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OK, enough is enough, self analysis is over!!

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         Ok, a couple of day's have lapsed since I last did some of the  'blog prep' work that you see above, so I have decided to go balls out, allow myself to become totally exposed and lay my cards on the table!!  My wife has been beating me to get things out in the open for so long now and I realize it is time for me to get one weight off of my chest!  I have told everything about my journey so far with this 'Bastard Thing', the good the bad, the funny and the sad, everything, now that the cork has popped, what the hell, it's out there, love it or loathe it, it's there and I can't put it back and I don't want to now anyway! However, there has been one thing that until now, I have not mentioned, it is something that has held me back for all of these years, not just my own acceptance of M.S but the acceptance of M.S and me,  from  my own parents! My immediate family, my wife and my girls have from June 2000 given me unconditional love and support all of the way, right from those bad day's, those oh so fucking dark day's right up to today where my physical health is a million miles away from what it was! The bonds I have got with my closest friends are so strong, the deep love that I have with them is almost as strong as it is with my wife and girls and for an old 'Rocked -out- Metalhead' like myself to say so, is a bit of an achievement I can tell you! However, I never got the same support from my own parents, from day one, the help was never offered, phone-calls were rare, the visits were brief, there was never the offer to take the kids off our hands for a while, to give my wife more time to concentrate on me, these basic things were never there! They would inquire about my health but they would carry on with their lives as normal and for some of the time, I was too ill to notice and had a much different agenda to work to!  I suppose it affected me much more than I thought and in the years that have come and gone since, I have given even more thought to it and realized that it has been very much the elephant in MY room so to speak! 

So I suppose the point I am making is that during these years of recovery and relapse and to where I am now, they have caused me great psychological  hurt and even now I have never gotten over the fact as to why they basically abandoned me in my 'hour of need', I can't hate them for it and I never will but I will always be saddened by it! 

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           I suppose I have tried to suppress this as best as I can for such a long time, I just can't and won't do it any longer.  Let's face it, the cord was cut once in my life but that cord has now come back and become a rope but enough is enough, I have to put 'me' first now!  I must start to think more about me and the people who matter the most to me, I know that I have taken a long time to do this but by me writing my thoughts down, I have taken the first steps to acknowledge the problem!  Blood may be thicker than water but that rope has got to be cut, I'm changing trains and heading off on a different track now and I can't take any heavy baggage with me!!

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 Where do I go from here?

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       Well my friends I reckon that there is only one way and that has got to be forwards!  I have now started to to take steps to overcome the main obstacle, just by putting it down in words and reading it back to me has helped, no question!  I owe nothing to nobody, except to 'MYSELF' and I owe it to 'MYSELF' to return to the person that I was, I want to be that guy again!  I am now fifty four and I know what I wake up to everyday,  my parents are in their late seventies and early eighties respectively, they are now in the twilight of their lives, they may have their own reasons for the way they have been with me, I just don't want to know or to care anymore, I can't and I won't let the way they are have any effect on me from now on!

                So, my story is by no means a unique one, personal to me of course and I am sure some of it, others can perhaps compare to events in their lives too, either way I 'aint done and I have no plans to shut up shop just yet!  So if you want to stay and join me, you are more than welcome, the more the merrier!
              Until next time, I hope you all stay well, don't hang onto any heavy baggage you may be carrying, just let it go, it's only holding you back! Of course, it goes without saying, keep on spitting this Devil in the eye.
                            Bombs Away Dream Babies.X