Wednesday, 15 October 2014



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

6 comments:

  1. You do have a way of describing the indescribable, invisible RRMS...TY and try to let go of things that drag you down.

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    1. Hi Mary, I just hope I didn't come over too morose this chapter, I have just been a bit low, but near the end of the week, feel good, the only way is up so next time, much better! Thanks as always.X

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  2. NOW who is Leonard Cohen? ^_^
    Several thousand points for: 1. the stack of Marshalls (my husband is known as "Stack of Marshalls Harcus", though he is a Strat man himself) 2. giving me the name of my future Roller Derby group, the Fighting Hellcats, and 3. XTC (the greatest band ever, though I hate to tell the maker of that video: that song comes from "English Settlement" not "Drums & Wires" so they got the album cover art wrong...) And yes: always listen to your witches. Let's you and me and Mary spit in the devil's eye -- 1...2... 3!

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    1. Hey Doll, spooky or what!! I am a Swindon lad, born and bred and I could tell you some stories about XTC, jeez where do I start!! I used to watch them rehearsing when they were known as The Helium Kids and then they became known as Star Park, I used to go to school with Barry Andrews, the original Keyboard player, who incidentally came back home to a poetry reading festival and to cap it all, I saw the debut performance of the newly formed XTC in '76 when they supported The Damned, now does that make me an anorak or what, or just freakin' old!!!! This Roller derby lark, I've seen it on TV and speaking as a man, you know.....a guy, I found it to be rather easy on the eye until they started to knock seven bells out of each other, woah mama!! Your old man will know that there is not much too compare to a stack 'o Marshalls cranked up to 11, or maybe the wicked wink and sly grin that Leonard Cohen is so good at! Till next time.X

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  3. I know exactly what you mean. I have days when I want to punch people in the face and shake the bejesus out of them. Especially when I don't feel well (and they can't see my pain), and they say "well, you look good". I know I look good. I'm freakin' awesome. I FEEL like hell though. I don't have a lot of MSer's to chat with, so I tend to hide in my head and discuss the whole bastard issue with myself. Sometimes it consumes me, but I usually come out the winner. I just wish they'd hurry up and find a cure for this evil bitch of a disease. I'm over it and want my pain-free self back. I want to climb mountains and take long walks without knowing that little ball and chain will hold me back. I never give up though, because I have too many people counting on me to come out on top. Looks like you do too. For now, we must contend with our inner MonSter and keep on truckin'. Great post. Thanks for sharing. :)

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    1. Hi Nicole and thanks for your comments. That trip I am taking to Glastonbury in a few weeks, I reckon that is what I need, a bit of a re-charge, so I will be ready for winter maybe, hopefully ready to take.....whatever on, we shall see! Take care and try to meet other M.S'rs, make sure it is done on your terms and be yourself, always! X

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