An Unwelcome Visitor: Chapter 25

           

They have got their way of living, .........I've got mine!

                    I know it is an awful thing to say and I also know that it is an awful thing to even contemplate but the very thought of using your M.S as some kind of 'weapon', a big 'stick' to wield about when things are not going your way, is something that I have never done and would never dream of either!  I've never done it and all of my M.S friends have never done it either but I still come into contact, albeit occasionally, with people who assume I do and it really pisses me off!! I always find it hilarious when you speak to someone who is perfectly healthy and they get round to asking me what 'privileges' and 'benefits'  do I have and 'I bet you have a disabled pass'!! Well actually dickhead, I don't have any and for your information, I don't want any either!  I know having that pass alone would help greatly but I just don't need one yet, there are far more deserving cases than mine and at this moment in time I would feel such a fraud, so PISS OFF!!!

             
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                       It makes me think that because I want to be seen as normal, thought of as normal, someone who to be treated the same as everybody else, somebody who is  always prepared to do his 'bit' in the workplace, because of this, there are people who I work with, who just do not understand what drives me on, what drives most of us on for that matter, what makes me want to do it, to keep on working!  This, if I allow it to, can have a very detrimental effect on me because I just fail to understand where they are coming from in the first place and recently I have questioned 'them' and asked 'them' to explain to me, what exactly is the point they are making! 

            The main thing that they always ask me, is why, why do I do it, why do I risk so much, for what to them seems hardly worth it!  Let's be perfectly honest for a minute, there is only so much I can do both physically and mentally before even I notice the warning signs looming ahead!  When this happens, I just have to sit back for a minute, take stock and either stop for a while and reluctantly, oh so fucking reluctantly, tell somebody that I need help or in some cases, leave it alone altogether but this is up to me, I am in charge of my own destiny!  Obviously I am referring to my working life, my day to day work load and how I deal with that, my personal life is pretty good at the moment and I am lucky enough to say that, I can deal with that side of my life, without too much problem.  However, when some of the people I work with could not give a rats ass if I do the work or not, how the work is done, when it is done, it's not their problem and I for one, do not blame them!  Why should I be treated any different to them, ok so I have got this Bastard Thing hanging around my neck and I am fully aware of that every single day for the rest of my life but they don't know that, I am not in a wheelchair, there is no 'real' clue!  They assume I think the same way as they do, fair enough, do I take that as a compliment or what, ............well fuck them, I can still think for myself, I have no desire to think their way and I get wound up that they even have the audacity to think that I even remotely share their view, they have their own agendas to work to and I certainly have mine and 'never the twain shall meet'. As it say's in the song, 'Who Are You'!!!

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        When the subject of me and 'my' M.S comes up, the amount of people who I come into contact with who can't understand why I did not take early retirement on medical grounds, why do I even put myself through this, they are always telling me that they wouldn't and I must be mad, (well, maybe they have got that bit right!!) but my battle is very personal, I can't share it with them and really, I don't want to, they may intensely piss me off with their observations of me but I would not wish this Bastard Thing on anyone !

       As I have said in my early blogs, the main things that kept me going in those 'dark' days, was that apart from getting as well as I could, there was and indeed still is, one reason and one reason only that drove me along, getting back to work and being able to stay at work! Call it selfish, call it crazy, call it what you will but that's how it was and indeed, it still is!  Now this alone makes me out to be something of a weirdo amongst my work colleagues!  I am constantly asked why am I still at work, why did I ever want to come back in the first place, surely my health is far more important, so why put yourself under pressure of any kind?  My answer to them, is one that they still do not get, they never got it all those years ago and they probably never will!  I don't think it makes sense to anyone, unless they have ever looked this Bastard Thing right in the eye like I have and of course, many just like me!  As you know, I am a flippant sod about most things and I suppose, I tell it like it is, about life in general I suppose, perhaps I should re-evaluate my way of thinking, my plans for the future, perhaps I should take my foot off the pedal for a while but my friends............I can't!  If I am going to be as honest with you guy's, as you hopefully have come to expect of me, if I am perfectly honest, I am too goddamn scared to 'drop' my guard for one second, I mean.....really scared, shit scared! I know what possibly lies in wait for me, just waiting for it's chance!  Ok, in layman's terms, imagine a boxer out training on a road  run, there are bushes either side of the road at various intervals and this Bastard Thing is hiding somewhere, anywhere, just waiting to leap out on me, get the drift!!

*****************************************************                  I have got to be on permanent alert, ready at a moments notice to prepare for a scrap! Please do not misunderstand me, I am not a coiled spring  just waiting to go off  but It is at times, very tiring, to my body and to my brain, never mind about M.S fog, more like treacle but so far, luckily, I have managed to fight back and get up and keep going! How long can this carry on for, I don't know, I would like to think that my personality, my strength of character has been my weapon to take M.S on, maybe it has, I don't know, perhaps sometimes when I think about it, perhaps my absolute contempt for it in the first place, my refusal to give in, perhaps this way of thinking, has 'confused' this Bastard Thing, perhaps it has yet to work out what plans it has for me, who knows!

                      Someone said to me recently the same thing that is often said to me, 'nobody knows how to take you, nobody is sure if you are taking the piss, if you are being serious about anything or not?'  I must be honest, I had to stop and give this question some serious thought, not because it 'offended' me but perhaps it was time for me to take a 'good' look within myself, this prospect certainly gave me no cause for concern but nonetheless, I started to analyze 'ME', to see what is perhaps, on the other side! 

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                         I don't see myself as a selfish bastard, so it is with some bemusement that other people should, as far as I am concerned even remotely think that of me that way and  I hope they don't!  I know that sometimes my wife in particular, does think that I am too quick to use this Bastard Thing as an excuse........no, a reason, for my attitude towards some issues or people, she sometimes says that I am 'too' quick to use my M.S as the reason,  I am like I am 'sometimes', the reason I behave like I do 'sometimes'!  Of course, I am 'always' quick to refute any such accusations and she will always say that I don't realize that I say these things, 'it's not my fault', 'you don't know what I am feeling' or 'I don't mean anything by it' or 'for fucks sake, you 'aint got a clue what it's like'!!  These and hundreds more are things that I say a lot, I don't realize I am saying them, I don't wish to cause harm to anyone by using them, they are not spewed out like some kind of weapons and for the most part, I am sorry.............or am I???  These are classic cases of how this Bastard Thing can fuck around with your mind, some call it the M.S fog or other such 'mystical' terms, I however, am a bit more blunt as you would expect and I am sorry.........no I'm not, it's a 'mind game', it's a fucking mind game, sometimes one of 'epic proportions and one that you have to hold on tight and just let it do it's stuff because you have no control when 'the bullet hits the bone' so to speak!! 

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                 During this 'journey' of mine, I have met a lot of people with M.S and they all, without exception are very 'deep' people, by that I mean great 'talkers' and 'thinkers', some have accepted their lot, others like me have not, as I am sure you have realized by now (25 x blogs and counting!)!  Were they before?  I know I wasn't, I could chew the fat with the best of them but I wasn't particularly a very 'deep' thinking person!  Back then, life was a gas, my world was bumping along nicely thank you very much, people never bothered me anywhere near as much as they do now, I was very much a 'c'est la vie' type of guy, you go your way and I'll go mine!  Today however, things are a bit different, I think about everything before I do it, not so much before I 'say' it but definitely the former! I am sure that if this Bastard Thing was an 'entity', was some form of 'presence', if you could see it or reach out and touch it, it would be laughing it's tits off because it is winning! Never mind about what it can do to your body, I firmly believe that it starts doing it's stuff with your head, your mind, the way you think, it's like it creates your very own 'alter ego', your very own Jekyll & Hyde!  That may sound a bit pompous, a bit too extreme but just look what it can do to you!  It makes you think way, way out of the box, it gives you ideas and beliefs that are just not YOU!

The main thing to remember is that this Bastard Thing does NOT make us bad people, horrible gits or even self centered, not permanently anyway, agreed it makes us 'sometimes'  self absorbed, occasionally 'not nice' people to be around even, notice how I said 'OCCASIONALLY', as long as you are aware of these little foibles, it makes it easier to recognize them for ourselves and how to correct them when somebody points them out to us. At first like me perhaps, you deny it, you argue your point, 'it's not me, it's never me, I have not changed that much, it's not me, never, not no way not no how, it's always THEM, well it is to me anyway! '

                 It is these times, these oh so shitty times, the times when you should look in a mirror and question yourself, I'm not really like that....am I!!!  Believe me my friends, we all do it, some briefly, some longer than others and some even stay like it, refusing to acknowledge it and some are just completely unaware of it, of the damage it causes to them and to their loved ones! As the saying goes, 'You always hurt the ones you love' , Christ, 'aint that the truth!!

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If anyone should ever ask me if I have ever been to that hell hole and have the door slam shut on me for a while, then my answer would be YES, of course I have, you ask my wife!! Then again, I think we all have, I think that the most 'well adjusted MS'r', those that are the nicest, loveliest people you could ever meet, even they have their quiet moments, their dark moments, their 'fuck off and leave me alone ' moments and most I have ever met, will tell you that is what happens, none of us like it,  Christ we may all have this Bastard Thing to deal with in one way or another but we are only human after all, if you cut us, do we not bleed,of course we do! 

All I can say is, if you ever have to visit the dark corners every now and again and unfortunately you will, once you sort your heads out, you have got to get the fuck out of there as fast as you can, just don't stay in there and have a look around, you have much better things to think about and much nicer people and places to see! Never if at all possible let this Bastard Thing make you 'think' that it has got you, lie to it, cheat to it and as you leave that hell hole, flick it the bird, please, just for me, you will be so glad you did and you will feel a lot better, maybe not so much physically but certainly upstairs in your head and you can then, hopefully start to think logically!

I know that some of you are saying, 'if only it was that easy', well let me tell you, it 'aint easy, in fact it is fucking hard but you have to do it, don't let it take ALL of you!

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        As I have said before, I am so glad I am not deaf!!  So please indulge me in my undying tribute to Mr Gilmour, the title of this song is so apt for how we ALL sometimes feel with this Bastard Thing, in fact it speaks volumes on our behalf, so take a few minutes to read and listen to the words and also admire the sounds that will wash over you, it 'aint gonna cure you but for the duration of the song, you will begin to appreciate the joy that someone who is a master of his instrument can bring to you!

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A Poem For Dave.

If only life was as pure and clear,

As a solo from Dave!

No Distortion, No Fuzz,

Just a Sound that is clean, without any Fuss,

No Interference from outside ,

Just a Sound So Sweet, it becomes almost ungodly,

It can grab you, albeit in a gentle way,

It can hold your attention,

Correction, it demands your attention, 

You do not move, You cannot move,

You are transfixed, you want it to never end,

you just want it to go on and on!

How does he do that? 

You neither Know nor care,

........but if Angels existed, if Angels could sing,

If an Angel could be heard,

I'm sure they would be dancing on each of those six strings!

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I am off to Paris for a week soon, I am so looking forward to it, I am brushing up on my schoolboy French, sorting out my Euro's, I have ordered a money belt, my wife draws the line at me getting a Tazer gun, spoilsport, I plan for us to visit the grave of Jim Morrison , maybe a spit in the Seine and maybe a run up Mont Martre (well a walk actually but I can dream can't I),  I want to sit outside a cafe, with a big glass of Red and pulling on a Gitanes,

(I have not smoked for 26 years but sometimes, I miss them so much, bad for my health I know but back in the day, a cigarette was SO comforting!!!)
 So my next blog will be a kind of travelogue with a few 'twists'!
Until then, keep well, stay well, spit this devil in the eye and be true to yourself, think of others but don't WORRY about others they will be alright, you are not being selfish, just being realistic!!!

Bombs away dream babies, until next time.XX

An Unwelcome Visitor: Chapter 24

'There are other things to deal with, to face up to, we are not immune, at the end of the day there are other shitty things in life, not just M.S !!

             Having M.S is bad enough, sure there are a lot of things that are just as nasty as this Bastard Thing but having to deal with M.S and the effects of M.S on a daily basis, tends to make us 'blinkered' about all of the other illness's and conditions out there!  I know that on a personal level, I do tend to be very 'dismissive' of all of that other 'stuff' out there, I am very selfish I suppose in that respect, if it does not affect me in anyway, if it does not make it to my radar screen, sorry but I'm not interested, the game I play is far too complex for me to find time to deal with anything else!  

                                Now, when I look back on what I have just written, when I really 'analyse' it, should I be ashamed of myself, should I 'expect' people to think that I am a selfish Bastard, now that my friends, is a poser if ever there was one! Well firstly, this is as you would expect, purely a brief summary on myself, let's get that straight from the start! I am in no way ashamed of myself and I hope people don't think that I am selfish either because I am fundamentally none of the aforementioned! I don't 'think' that other M.S'rs think this of me either, probably why I feel comfortable in their company, why I can talk about this Bastard Thing to them easier than I can to 'non-members'! Maybe it's a bit of jealousy on my part is the main reason, don't know but if you are fit and able and life for you is a breeze, then don't bounce your problems off my ass! 

             I don't know but it is part of my 'character' that I have now 'morphed' into and I must be honest, there have been times when I have had appointments with Doctors and other 'white-coats' and there have been occasions when, although I have never said it but I have certainly thought it, 'you don't REALLY know what it's like', they obviously know more than me from a 'technical or text book' point of view but they don't know how I/we 'really' feel and I am sure that sometimes,  this has come through in my eyes during the various meetings I have had with them!  For the record, I can't help it, I'm aware of it, I don't like it but that is just the way I am, the way I have become, so that gives you some idea why I hate this fucking thing so much!

  

....................so therefore, I CAN think this way!

 ................should I,  should we?  what the hell for, I've done nothing wrong and we have done nothing wrong, maybe had an opinion that I/we have voiced but that is all!

                        Both of these issues, trains of thought if you will, are the way I still tend to be very dismissive, perhaps too dismissive when they are presented to me, they have been 'touched' on in previous blogs that I have posted and I do wish that somehow, I could, at least begin to think differently!  As hard as I try, I still find it incredibly hard to be sympathetic to someone else's problems, it may be health, personal, just day to day stuff but to anyone who comes at me with any problem that I consider to be not worthy of a well constructed response, that is when I do have difficulty, I do feel awkward and I do try to get out of certain situations, rather than face them because I know I might come across, not exactly hostile but certainly, sometimes uncaring! This is a part of my character that I do not like, I have very little control over and I suppose it is certainly not a image of the 'real' me, fortunately my closest friends and family, those that knew me before are ok with it and slap me down when it happens.  I know that some people still find it hard to talk to me about M.S in general , they find it awkward, they never know what is the right or wrong way to take it on,  just by me referring to M.S as this 'Bastard Thing' freaks them out and I'm sure they think it is 'listening' when I refer to it by that name!  Yea right, as if it is listening to me anyway, it worked it's magic on my ass fourteen years ago and fucked off pretty sharpish, so do I feel ashamed for referring to it by it's real name (to me anyway), should I refer to it as that 'nasty little disease' that came for a while and oh yeah, decided to hang about for a bit longer!  Well my friends, you can call it what you want but I shall shout it from the rooftops, for to me it will always be known as this 'Bastard Thing', my chosen name for it!

..............am 'I' evil, am 'I'!!!  When it comes to you M.S, you had better believe it!

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My main subject matter this week is how do you deal with any other illness that may affect you ,'apart' from M.S, when you are faced with it , how do you deal with it, how do you feel when it happens, is it something you can 'switch' your attention to easily?

Maybe like others, I do tend not to think about any other ailment that sometimes you have to deal with, in anything like the same way as the BIG one, as I have said before on numerous occasions, M.S does tend to make you, correction, 'demand' that you give all or most of your attention to it and everything else is purely secondary! However, none of us are immune or exempt, call it what you will, from getting any other 'major' ailment and that is why there is a certain amount of 'surprise'  when other things do come knocking at your door.  As I will explain, this has happened to me recently and apart from being un-prepared for it, I was a bit shocked and dismayed, I have M.S, what the hell is going on!!! 

             As I have said, this past two weeks I have endured 'gall-stones', for the second time in three years and man that is painful, I mean 'REALLY' painful!!!  Those that have had it will know exactly what I mean, bent double, excruciating, the worst ever, I mean a 'don't know what to do with yourself' kind of pain!  You get put on painkillers that make you 'SO' constipated they might just as well have super-glued your ass up! I just could not go, it was too painful for a start and so some serious action had to be taken!!  I have been eating fruit by the lorry load, prunes, apricots, I am a veritable 'market garden', I have been drinking water by the gallon, prune juice, pure orange juice, doing all of the things that I am supposed to do.......although I have not tried dynamite yet?

....................I think my wife wonders what I am fussing about, she say's I am full of shit anyway!!

............I am not well, I am very uncomfortable but when I am better, you just say that to my face!!!

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       All the while this has been going on, I have been dealing with the pain, the discomfort of these wonderful little jewels of delight, the ones that we call gall-stones !!  I know you ladies out there are thinking, 'what's he moaning about, he should try giving birth'!! Agreed, but I'm a guy, moaning is what we do, we are good at it, especially when it hurts like hell!!!

Funny thing is, during all of the pain, I have not given a thought to, or had reason to for that matter, the Bastard Thing, strange, my mind has been otherwise engaged, so all of my thoughts, all of my concentration has been aimed elsewhere!!

Personally, I think it is a good thing, my mind has been pre-occupied with the pain I'm going through with the gall-stones, that for the moment at least, M.S, you lose, I have to live with you twenty four seven, this 'temporary pain' is a 'newbie' and it has pushed you into second place, live with it!!  One consolation, gall-stones is going to go, albeit eventually, however, M.S is going to be around for a while, so it wins again, it always fucking wins!

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Just goes to show us that there are more things out there that have a power and the capacity to really screw you up and there are things that, especially in my case recently, HURT, things that have made me realize so much yet again, that I am as far as M.S is concerned anyway, a very lucky sod!  I won't go as far as to say that my M.S is a breeze, far from it but compared to a lot, I am pretty OK!  So when I am hit with any other ailment, I like to think that I suffer in silence, well, on a 'lower' volume than usual anyway, especially when I am around my fellow M.S'rs !

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         During these past two weeks of 'enforced' timeout, there have been times when a feeling of 'deja vu' has been creeping in.  I know that the reasons are totally different and the outcome is going to be in my favour, I am returning to work on Monday and back to a life of relative 'normality', so I have not got too much to complain about!  However, when I think back all those years, it was in the summertime that I was first stuck down with this Bastard Thing and it was during the summer months that I spent so many hours, days and months wondering what the fuck was going on, was I ever going to come out of the other side, so you must forgive me for having a few 'quiet' moments for reflection!  Two totally different problems 'medically' but both give very similar mind sets, believe me, my strength of character has pulled me along but there have been a few moments where a form of self pity has started to creep it's way in and if it wasn't for the help of my wife, kicking me up the ass and sheer 'pig-headedness' on my part, it would have been so easy to start to wallow in self pity!!

As tough as it is, you have got to keep going, I know it is tiring, I know it is hard but I have to keep going at it, I can't let this Bastard Thing make 'me' never want to take it on, make 'me' want to lie down and let it trample the shit out of 'me', I can't and I won't!!

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IT'S UP TO YOU,THE CHOICE IS YOURS!

(just a poem that came to me whilst sat on the loo, a flash in the pan if you will!!  Don't worry I have washed my hands!!)

OK, so you know what it is, no turning back now, it's with you for the long haul, live with it!

It 'aint gonna kill you, well not this type anyway,

So just make do and mend, adapt and diversify!

Well excuse me, that's easy for them to say, their life stay's pretty much the same,

I don't see them stumbling with their feet, I don't hear them stumbling over their words, they are not forever tired, they don't need to pee for what seems like every five minutes!

Oh no, their lives are all ship shape and Bristol fashion, they are just fine and dandy, thanks very much!

Wait just a minute, it 'aint their fault, of course it's not, it's nobodies fault, they did not give this Bastard Thing to you, far from it, 
They only want to help you!

So just sit back and take stock, 
If help is there, if help is offered, 
Take it, be glad to accept it, if it is practical, then use it, 
If it is for company, then grab it, 
If it is just a listening ear, then bend it!

You, me and we need not go through this alone, 
There are no excuses to be alone, 
For this is your new life, 
One not chosen by you, You can shape it and mould it
Into what suits you, you will soon learn for yourself,
That there is no point in hanging onto what was,
 Your life now is all about what is and how it will become, 
That is your choice and yours alone,
You can wallow or you can move on as best that you can.
The thing to remember, at the end of the day, you are still here, 
As tough as it is, you are still here!
 We may not think so but things could be so much worse, 
We may think we have all the right in the world to complain, 
To moan, to kick off big time but wait just a minute
  Take a good look around, look, observe and study things and all  Of the problems of others, will soon become clear,
Your things appear to be bad, your things do look like shit 
.......but your life could be a whole lot worse and that is something to always remember,
In the grand scheme of things, in the Poker game of life,
Through all of the trouble and all of the strife, you 'aint got it so bad really,
 For you,life is sometimes tough but it could be a whole lot tougher!

Well my friends,  I have gone through the mill this past two weeks, something I would not recommend that's for sure  but as I have said, it puts life into some sort of perspective and I suppose, when I really stop and work it out, I am grateful for situations like this when they do come along!  When they happen, firstly I think, c'mon,  I don't need anything else to contend with, then I look at the bigger picture and  realize there is ALWAYS somebody worse off than me, so Doc', just you shut the fuck up and stop complaining!

Until next time when I should be back to being the same old miserable but oh so nice bloke you have come to expect, so just you all keep well and keep on spitting this devil in the eye. 

Bombs away dream babies. XX