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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