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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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.
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!!
****************
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!
*********************************************
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!!
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!
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
