A New Year and a New Blog.
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2015....come and have a go if you think your hard enough!
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As I have said so many times before, we have all got our OWN story to tell, our own way of dealing with this 'Bastard Thing' and as we all have the same diagnosis, yet we ALL deal with it differently, so think about it, a blogger does not have to make you a Geek with a cane or a Nerd in a wheel chair,oh no, it makes you a REAL person, an HONEST person! There are many things I have talked about that a year ago I would never have dreamed about telling anyone, with the exception of my wife and perhaps a few close friends etc, but because I 'aint got a clue what you all look like and I only know what you want to tell me about yourselves, perhaps I am far braver than I ought to be when I am thumping away on the keyboard, anyway,my ramblings are just going out there into space and not to anyone specific. My stuff goes out to anyone who wants to have a read and some of these people I am SO pleased to call my friends, maybe friends with a mutual interest but these are not just my M.S friends, oh no, these are some of my GOOD friends even some really dear friends and some are really beautiful people, people that I have got to know simply by spewing out my heart and soul every few weeks.
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Remember, just because you have M.S does not necessarily mean you have to pile it on!
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So I must keep fit and I will stay fit, I've got to stay fit, it won't be easy because I have become very lazy when it comes to any form of 'regimented' fitness plans! That is why I like these 'ten minute' plans that keep on appearing all the time, the ones that are designed to fit in around your day, especially if you are still able to work. Even these still have a hard job on their hands in making me want to do them everyday and also for me not to 'cheat', by that I mean ten minutes MEANS ten minutes, twenty reps MEANS twenty reps, Christ it's no big ask really I suppose and the benefits are more HIT than MISS (in theory anyway!) so really it's a no brainer, I've got to do it and so should you.
Whilst remaining as active as possible, my job, although the bulk of it is done from a computer in my office, there are also many functions that require me to walk about anyway, to lift and carry, climb stairs and fortunately for me just keep as active as possible! t I am forever being told off for doing too much, what some say is ' unnecessary' tasks, this my friends is a permanent bug up my arse, they just do not get it, it may be unnecessary to them but to me, it makes perfect sense!
Due to the fact that I just don't know what is in store for me each and every morning when I wake up, I have this really macabre thought that one day, I might just not be able to get out of bed without falling flat on my face, rolling over and just lying there like some 'Robbie The Robot' character from a 1950's B-movie, an exceptional bit of work of course, when upright that is (much like myself) but fucking useless when he is on his back!!(much like myself too sometimes, not ALL the time I hasten to add!)
I suppose the mantra us M.S'rs must work to is:-
IF I CAN, I WILL, WHENEVER I CAN AND HOWEVER I CAN BUT I WILL BECAUSE I MUST!!
Or end up just like ROBBIE!
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As you all know, I just can't relax anyway and I suppose that includes while I am walking, perhaps I should have an mp3 player jammed in my ears, hitting my senses with some cool tunes, (knowing my luck I'll probably get hit by a truck)! So I will have naked ears, far too much for me to concentrate on without getting off on any form of music, sad but true!
The very 'art' of this, just keeping things at a manageable level, is something I find such an incredibly hard thing to do, I want to run but I can just about manage to trot, so I will walk faster instead but that's no easy thing to do, if I walk too fast, I may feel fine for a few hours the rest of the day even but I could end up feeling shit the next day, which is no good for me if I want to work, to do my job! So I personally find that by keeping myself moving, stretching and bending and doing it in a sensible way, little and often, so far it is manageable , not all the time obviously and when that happens, I just don't do so much and will just do various exercises from the chair at my desk, pelvic rolling movements, shoulders back, arm stretching and rotating, hands on hips, moving left to right, that sort of thing. I know that some of these exercises have been doing me some good because there are parts of me that ache like fuck!! So I have adjusted them to suit, asked if I am doing them correctly, if I am doing too many or not enough, all of the usual questions, I suppose it is all about getting the balance right and resisting the temptation to push myself too hard, I think I know by now where that could lead me if I am not sensible!!
Now I will be perfectly honest, for me personally, doing all of this stuff, may keep me moving, helping to keep other 'issues' at bay when I am at work and sometimes at play but it does not stop the fatigue that this 'Bastard Thing' is so good at! I am, up to now lucky, fatigue effects me part of my day, it is held at bay by my little 'wonder' drug, Modafinil, without it, I would be fucked, no question, so I respect it, I don't take it for granted and above all, I heed any warning signs and now, reluctantly of course, I think you know me well enough now for Christ sake, I listen to my body and so should you lot too!! Of course, keeping myself as fit as possible and managing my fatigue is quite a balancing act let me tell you and I won't pretend it is easy because it's not! Keeping those two in check plus trying to keep my concentration in order, is sometimes quite difficult for me to maintain. The three of them, keeping moving, acknowledging my fatigue and keeping the wheels in my head turning, all things that require a lot of effort from me because it is only ME that really knows when they are failing ME!
One thing I know that I have got to sort out this year is my attitude! I know that I do come across as a bit too cynical about too many things in my life and life in general. First and foremost is my attitude towards the medical profession that I come under, mainly because of my 'sort it out now' feelings towards them. I can't help it, I know it's not their fault, they can only do so much, then the whole thing gets too foggy and mysterious even for them! I am always being told by my wife about the way I show my feelings and indeed my attitude towards them, I am sorry but even now, if it 'ain't what I want to here, I still have this 'way' about me, I might not realize that I show it but I do, my wife will always tell me that sometimes I waffle on when I see the Doctor and other times I don't say enough, maybe it's a bit of confusion, being left with so many unanswered questions, add that to a whole load of sadness and a shit load of anger, none of which does me any good at all, so it has to stop NOW!
I am seeing the main man (my 'new'Neurologist and it will be a first meeting for both of us) in February so I will be doing a lot of listening and being more...open minded, well for me anyway and I will be more of a listener and I won't expect any miracles and I won't be quite so dismissive of what is said to me. I know it is not his fault if he can't tell me what I want to here, let's face it, they never can, can they! You never know he might enter me as a Guinea Pig for trials for a new wonder drug or a miracle vaccine, well...... I can fucking dream can't I!
I think that as I have grown older with this 'Bastard Thing', in lots of ways I have become a bit more of a 'people' person anyway, to people I like that is! Perhaps part of me has mellowed with age, I was never a nasty person to be around anyway, it's just that I find I like the company of people that 'interest' me, that sounds so pompous I know but due to the way this 'Bastard Thing' fucks around with your head, the other person has to interest me in order to 'hold' my attention so that I am able to 'engage' more in meaningful conversations MAN!, I enjoy a good laugh, a good discussion too and it is not uncommon for me to end up with a skull buster of a headache, usually for all of the right reasons. However I still get defensive about certain things, I will still stand up and question something if I believe it to be unfair or unjust, I will argue back, if I don't like something , I will say so. This I find, personally speaking of course, to be a great thing to still be able to do, it means that the old gray matter is still functioning, perhaps not as it should but functioning nonetheless. I suppose I am opinionated about various topics, not just M.S but a variety of things and I do reckon if I was to ever enter Mastermind and have M.S as my specialist subject, I would wipe the floor with the opposition,
Q."Welcome Martin and your specialist subject is.....
A."My life with this 'Bastard Thing' from June 2000 to the present day"!
So this New Year is going to bring us all some new challenges, good, bad or indifferent, we are all going to experience some new emotions. We may be looking forward to it, we may be dreading it but nonetheless these experiences are going to be there for the taking or avoiding, how will we deal with them...who knows. As I have said all along, it's up to us as individuals, we are all different, some of us will be up for anything that this 'Bastard Thing' throws at us, some will just go with the flow and some of us have to give a lot of thought to things that are going to alter the way they take it on, whatever, whenever and however!
Until next time, keep on spitting this Devil in the eye,
Keep as well as you can so you can stay as well as you can.
Bombs Away Dream Babies. X
Great Chapter! Been thinking it may be the neural damages that make communication strained at times. Or makes the experience of others sound familiar. I am curious about what others do, how they too suffer, cope. Having worked many years as hospital RN with Neurologists, there is a connection you must have. Total trust, gut feeling satisfaction. Or it will not work. Pick your battles. Don't repress anger, try to redirect. Sounds like you're doing ok except pain. Best wishes to you and yours. Fred gets me through the days, especially hit the wall days. Mary
ReplyDeleteHi Mary, thanks as always, so off we go with another new year, so what lies ahead, what is install for us, we shall see! I shall take things on with a more 'open' mind and be less harsh with my views and try not to be so cynical on certain things. I shall let you know. X
DeleteAh, the new neuro -- I hope you have one like mine that knows I'm no shrinking violet, is not bothered by my "choice language" (and even comes up with a few piquant words of his own), and doesn't push too hard on risky pharmaceuticals (I was kind of a guinea pig on the Tecfidera but the two of us made that decision and so far, hey, I'm well into the best novel I've ever written!) It's gonna be a good year, Doc. XX
ReplyDeleteHey Doll, not too sure how I will react when sat opposite him, 'exposed' as it were, I have heard that he has got a certain 'way' about him! Well excuse me, so have I apparently, so we shall see. I have promised to be a good boy and not to 'shut off' if the rapport is not there, to be upfront and honest, yadda yadda, not to try and have a laugh, he is devoid of the humour gland I am told, we shall see. Later.XX
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