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  

An Unwelcome Visitor : Chapter:27

When sadness hits, it hits hard and show's no mercy!

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On the outside, I always try to give the impression that I have got this 'Bastard Thing ' under some sort of 'control'!  I wish!! I have not got it under control, EVER, nobody does, it is always there and we all deal with it differently! I just deal with it in a way that suits me but it is always in my thoughts and most of the time, it is a permanent battle! I just have to be flippant about it, to be contemptuous towards it, this is the way 'I' deal with it!!  I am one of those M.S'rs who has the RR type, which as we all know, it comes and it goes, never for the same amount of time and always with a different game plan when it does! I do know I am lucky, Christ I know that, I still feel a little awkward when talking to a fellow M.S'r who may be  in a wheelchair but as I always say if asked, I may look good 'outside', thanks for saying so but there are times when I feel like shit inside, only another M.S'r will know what you mean, however,  there are other people who still do not think that is possible! It is not that they doubt your word or anything like that, well most people anyway, the easiest way I have always found is to simply tell them that there is a hell of a lot that is going on inside and just because you can't see it, these things are very real!

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               As I mentioned in my last blog, I have just had a fantastic time in Paris, it was truly, the best of times and I suppose, it is only to be expected that I should eventually, like now, go through a 'down' period, a reality check if you will and I have landed with a bump!  Although I was expecting it, my adrenaline tank has run a bit dry and I am now in  that period you go through 'between' the good times and those times when our normal everyday lives, our work lives in my case, are designed take precedent over everything else!  This is, in a way, good for me because it takes me away from thinking solely about M.S, it stops me feeling sorry for myself, well, usually! I try to keep the two separate if at all possible  but there are times when a 'wave of sadness' engulfs me!  Don't get me wrong, I am not talking about a relapse you understand, I am just referring to this constant reminder that you have got 'IT' and you have to deal with 'IT' for the rest of....... yadda yadda and there are sometimes when I just cannot be arsed! 

          I think the main problem is that I am just a bit pissed off in general, not depressed, well not that I recognize anyway, just one of those grey periods that we all go through now and again, especially M.S'rs, no point in denying it because we all do, OFFICIAL!!  Maybe it is because everything is gearing up for winter, I don't know, it is just that we all go through it differently, of course, that is human nature, not just because you have this 'Bastard Thing ' to contend with, now that would make us really boring! Thank Christ it does not turn us into robots or automatons, although that is what it would like I'm sure!

        I suppose, I am a tad more of an angry Bastard than normal at this moment in time, it will pass don't worry but it is just that there are times when it is such hard work!  I have spoken about this very subject to a lot of my M.S friends and all agree, coming to terms with it, accepting it and possibly even liking it, all of these feelings can and do cause various emotions, anger, frustration and ultimately some sadness! I am speaking for myself now you understand but these three main emotions of M.S that we all have to deal with, these  three elements that are so much a part of this 'Bastard Thing', for me at least, even after all of these years, I have changed but they are just the same!  I would always say that the main emotion that was always present in my case, the hardest to deal with, was always anger, without doubt!  I am doing my best to deal with that and I think I am winning, however,  sadness is always there and to  deal with  sadness, which is equally as destructive, it's just a bit more subtle in the way it can take hold of you! I am aware of it, I am aware of it's 'power' and I wish I was able to deal with it far better than I do, I shall have to find a cave somewhere and go off and have a good chat with a Yogi! I know I have got to redress the balance, dealing with these two emotions is not easy, a different approach is what is required but I have got to do it in order to keep things real, for me and everyone dear to me!

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      'Acknowledging' the 'Bastard Thing' is not the only thing that can be hard work, just having to do the basics, eating right, drinking right, remembering to take medication, all of these can be such a real pain, I am fortunate these are just hard to stick to at the moment, things may be different in the future, I just don't know, then again, who knows!  I get so pissed off with just being GOOD all of the time, I know it is the best thing for me, to be good, to treat this ' Bastard Thing' with respect, not that it deserves any,  I know that it helps me to do the right thing but there are times when I just think, 'fuck it', I want to be normal! It may be bad for me but sometimes, it is just so good just being BAD, not nasty bad, just being 'not' how you are  expected to be, what's wrong with that!  If I want to slob out once in a while, so be it, if nobody get's hurt, only me perhaps, what's the problem!  As we all know, you can't stray from the path for too long, you have got to get back and do the right thing because the longer you are away from it, the harder it is to get back on it, FACT, another reason why I hate M.S so much, it plays with you, it toys with you, basically, it's a fucking bully! 

             Then of course, I think that if I am not strict 'enough' with myself and I let things slide too much, other people will start to think differently of me, "poor old Martin, he used to be such a guy, now look at him, don't you feel so sorry for him!" This is, fortunately for me, far from the case but that my friends,  is what scares me the most, not succumbing to whatever lies ahead if and when,  just the thought of hearing those sentences, the very thought of  being a burden, having to be cared for around the clock, I just don't want my family and good friends looking at me with regret and sadness! I'm sorry if that offends and that is not my intention, that is just my personal feeling,  so PLEASE, PLEASE don't think ill of me!  Anyway, perhaps being the naughtiest angel in heaven 'aint so bad, yeah, I like that, I could start a band, fuck all those harps and lutes, dump the white bed-sheets and get rid of those fluffy white clouds, just give me smoke bombs and explosions and a light show to die for (oops! no pun intended!!) and just give me a Les Paul and a wall of Marshalls! Then, perhaps I think I could be pretty happy with my 'eternal' lot!  Hang on a minute, perhaps I should go 'downstairs'? I believe that is where all of the best parties are anyway, right?

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     It's so sad that we have to be so good all of the time don't you think, play by the rules, 'it's' rules, the M.S rule book, of course, you have to concede to defeat, not now and again but all the fucking time, we can never win, now that's not fair play now is it!
All I am saying is,  a Big Mac and fries does look good now and again and a plate of salad or a bowl of beans and pulses can be so hard to conjure up any enthusiasm for all of the time, I know it is better for us, I know it does us good but come on! Obviously  moderation is the buzz word and  the more you eat of the 'wrong' stuff, the more you will start to look like a slob but every now and again is ok, right? If you want to be bad, just be BAD!  When you think about it, what's the worst thing can happen to you now, ok you could be hit by a bus, agreed, you could be struck down with some other illness, you could even get caught with your best friends wife or husband, or even develop a mutual attraction with a total stranger, now wouldn't that be COOL!!! Just to think for a second, you may have a chronic condition but to still be attractive to someone else regardless, you could gaze into each others eyes then you could chomp down on that burger, yes now THAT is such a beautiful concept, got to be better than any drug!

Bad does not mean nasty, just a bit naughty!

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You can be NAUGHTY but you don't have to be NASTY, go figure !
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THE NAUGHTY DIET AND THE .............."good for you but oh so boring and................green diet"!

"Bring it on!"

"Not again"!

"Oh no, please"!

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           I am sorry if this blog all sounds a bit too ' down there' on my part, a bit too 'negative' even but I am sure other M.S'rs will know where I am coming from that's for sure and it will pass, fortunately  it always does, so far anyway!  Just remember, once in a while being BAD is GOOD, it keeps the wheels of your brain turning, the trouble is, I think that we are expected by all and sundry, to be good ALL of the time!  We may have a Chronic condition, we may, in some cases,  be severely disabled,  or we may not, like me but that doesn't stop me feeling sad, or getting upset or angry, my wife finds that difficult to understand and if we ever have a row, you can bet your life it is her way of shaking me up when I start to feel sorry for myself!  So just be bad once in a while, how you do it, up to you of course, you just do it the way that suits you best, I can't tell you how to behave and I would not dream of it,  just wear 'black' once in a while, just be naughty 'wicked' once in a while, I know a lot of my M.S mates still have that 'wicked' sparkle in their eyes and a lot have 'that' type of humour to go with it! Jeebus,  it's a bit 'tedious' having to be seen, albeit 'hypothetically' dressed from head to toe in white satin, all of the time and being bad stops you feeling sad!
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                   In my case, being BAD does not make me an ASSHOLE, just an 'ANGRY'man........sometimes!

 and being BAD does not make you a BITCH, just a.........'FIGHTING HELLCAT'!

   If there are those that think it does, they should try living with this 'Bastard Thing' around their neck like we do and perhaps try walking in our shoes once in a while!!  Do you think you can buy an asshole suit or a bitch outfit on-line these days, by jove, I think I have found a great business opportunity,  a eureka moment
if you will, Assholes + Bitches.com!!  I could become a party planner, I could organize Asshole and Bitch nights, Nuns and Priest nights are SO last year don't you think, " hi, I've come as an Asshole and my wife.............she's a bitch of course", now that would be a real ice-breaker anywhere!!
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Nice song but ....................

.............keep your 'inner' YOU never too far below the surface and remember........black is good!!

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   All my feelings this week haven't been helped due to something that was said during an after dinner chat with my wife, daughters and their boyfriends.  All good humoured banter, when one of my girls came out with a statement that stopped me in my tracks!  "What was dad like when you met him, we are all a bit confused because when he is with his mates nowadays, he is just so different, is that what he used to be like?"  "What do you mean, different" she asked? "Well he is kind of 'deep' and we know he is a 'metal head' and he loves his Rock but sometimes he sounds like an old hippy!" You have to appreciate, my girls are all in their twenties now, so things are easier to explain and even talk about without fear of embarrassment from either of us but my wife's answer still managed to make me stop and think!!  We had both had a couple of glasses of wine  and were pretty relaxed, certainly less inhibited and she began to tell a few stories about this crazy guy, from what seemed like oh so long ago, who just happened to be me!  We all listened and the one thing that I noticed for sure was that the guy in the stories, me, was a bit of a laugh, even she thought so and they were all wetting themselves laughing at the exploits of this man from long ago!

Happy,Sad, Happy,Sad, Happy,Sad!  Must work harder!!

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 I know I was younger, life was less intense I suppose, I worked and I played, I would say that back then, my life was pretty good and upon reflection, I had no complaints!  The question I am asking myself now is..........where does this person go and why does he only come back once in a while?  When the laughter had eventually died down, my wife turned to me and simply said that there is no real reason why I can't still be that guy, "you don't have to be quite so crazy"  just a little bit now and again wouldn't hurt"!

        She added, "You must put a hell of a strain on your heart and there are times when you look like you have the weight of the world on your shoulders"!  Of course she is right, I still keep beating myself up, that there are times when it just eats into me, It still does even after all these years. Then she had to spoil it by saying one of my most hated of all of the phrases, "just make the most of what you have got!" Of all of the bullshit and bollocks that an M.S'r hears,  far too often I might add, I know that no harm is intended and I know that 'perhaps' it makes sense but it 'aint what we want to here now is it!!! People mean well when they say it and ok, I kind of respect that but God I hate that term!  I don't want to make the most of what I have got and I am fucking certain that ALL M.S'rs think exactly the same, I want back what was mine and they want what was theirs, what was so cruelly taken from us when we were  not looking!

Of Course I do!
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Of course I smile, of course I laugh!
Maybe not like I used to,
Perhaps just once in a while,
........but I do for Christs sake, I know I do!
If you give me something to laugh at,
A real side-splitter or right old gut-buster,
I'm your man and I will laugh my ass off!
Maybe I'm just too selective on what makes me laugh these days, Too choosy, too picky, I don't know!
I  know that you busting my balls, don't make my it funnier, 
Perhaps it takes a bit longer these days to reach the spot,
You know, the 'laughter gene'!
.....but it's still in there........... somewhere! 
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 You would think that after all of these years I would have mellowed a bit, considered shaking hands with it, perhaps even throwing in the towel and admitting defeat!  Well, lets think about that for a minute shall we............................................NO, I'm sorry, can't do that, for starters, that's just not me, you see I have got to be angry at something and what better thing than this 'Bastard Thing'!  
       Perhaps I need a bit of Reiki, perhaps my internal setup is all to cock at the moment, maybe my special Angel who I see every week to sort out my 'inner being', has got to delve a bit deeper into my soul and help me get back onto the right pathway, MAN!  I know that I have been working  hard these past few weeks, my 'work' world does seem to be overloaded with dickheads at the moment and I more than normal, seem to be unable to tolerate them, I much prefer being on my own, immersed in my own workload, don't get me wrong, I love most people, I just don't like being around dickheads!   I am 'communicating', I do talk to them because I have to but all of the time I am thinking of being in a far, far better place that's for sure!!

That's a polite enough slogan I reckon but sadly, with a lot of my colleagues, I fucking mean it and they still don't get it!!!
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I need to relax, to chill a bit more, if I still smoked, maybe I would spark up a big doobie but I don't,  so that's out of the question, maybe I should get a dog or a cat!  They would understand how I sometimes feel and it would be therapy for me, they always say that cats and dogs do have a certain.....something, if they can't help me, they can just have a smoke on my behalf!  Perhaps I am just thinking too hard about my life, making things harder for myself........ don't know, i'll get back to you on that one!

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By the time this chapter reaches you all, I have had some Reiki and I do feel a bit more chilled, my Angel tells me that there is a lot of resistance and a bit of conflict going on in there somewhere and she is a witch, so she knows! I am going to Glastonbury in November for a few days, I feel I need to bounce around the Tor, find a better 'pathway' to follow and return a better person, I'm still a bit too far away from being 'totally chilled out'! Finally, to those out there that know, the 'Tigers Eye' will be the one, that baby is going to take care of business from now on!!

Until next time, stay well, try not to be quite so angry like me but don't worry if you are, it's usually only at yourself, don't let sadness get a hold either, that's a sneaky little fucker and it will pass through eventually, just make sure it does not creep in the back door when you are not looking because you have to deal with that one face to face, so be on your guard and keep on spitting this Devil in the eye!
Bombs Away Dream Babies.X