Was that me, did I say that, are you sure?

          That's a pretty familiar phrase that I seem to have been aware of quite a lot, going back as far back to day one of my life with this Bastard Thing and to be honest, it is still something that I hear that is guaranteed to put my head in a spin! Nobody goes out of their way to not be liked, well I don't anyway, I like most people, not all but most people I meet, there have been a few in my life that the dislike was a completely mutual thing,  whether it was some kind of wordplay or almost open hostility, hey, that's normal and I'm no different. However, I'm sure that most MS'rs out there will agree, we all sometimes get reminded by various people of things we may have said or things that we may have done since the onset of MS, the way we may have behaved, sometimes it can be thought funny, well, funny to them perhaps, then again sometimes the roles are slightly reversed, we may come across as the ones who are being rude, certainly not funny in any way but the sad thing is, you me and us may not even notice that we've come over that way at all! Sometimes it is a 'damned if I do and damned if I don't' situation and it's almost like I want to say,

     "It's my MS, not yours, you don't know what it's like, I am sorry, but you know what, I am sick of being sorry, you can only imagine what this thing is capable of, of what it does what it can sometimes make us do, but you don't know, you will never know, if you could hire an MS suit for the day, you may get to realize just a little of what we are all about, so until then please understand this,
                  Maybe I did say that, maybe I did act like that, then perhaps hopefully,  you will realise that I don't mean it and when I say I can't help it, that's not a cop out, I genuinely  can't!!  The strange thing is, the single most hated thing in my life, this Bastard Thing,  I do get so annoyed when people get the association of the two of us so wrong, I almost have to sometimes justify it! I sometimes feel the need to say,
         "No, No, you've got it wrong ,it does not make me do that, it makes me do this, get with the program and pay attention for fuck's sake"!

       

To Like and To Love has to start with yourself!

       I mentioned it last year a few times but getting back into the habit of liking yourself is so very important, feeling better about yourself makes a huge difference believe me, you may fall out of love with yourself over a period of time, months or usually years, it is so easy to do and the awful thing about it is, you don't even notice, most important thing to be aware of is that the set of problems begins and ends with you because at the end of the day, if you don't like you, you can't really complain much about others not liking you, fair's fair after all!

       Just because this Bastard Thing is here for the duration, does not mean you have to look like shit now does it, we have to make a bit of an effort to maintain our own identity, you don't have to take everything that it throws at you, because if MS was a thing or an  entity, it would love us all to be broken in every way, physically, emotionally and of course...personally!  Just remember, If others say you look well, it makes you think that perhaps, you don't look as bad as you feel and the thing to remember is that most people....mean it!
          However, if your Doctor, Neurologist or anyone you have dealings with in a White Coat says,
             "How are you today.... Christ you look like shit!!" ! Then and only then should you be alarmed but if those other  guy's, your friends and family say you look well, then you probably are well, if they know you, I mean really know you and indeed love you, then you should not be suspicious of their comments, they mean it! 

You don't have to fall into line with anyone, just be yourself!!

            Now this is something that I never viewed seriously until a few years ago, and it all stemmed from the time when I went back to work after being out of the game for almost a year. I had not exactly slobbed out but I had kind of neglected my appearance, I kept myself clean and always shaved daily, but wearing nice clothes, casual or formal was not really on my personal agenda, and as Stevie Wonder said in the song, "Never are they dirty", and in my case, they were not, Gill my wife saw to that, so that was ok as far as I concerned! However, meeting up again with my 'peers' did I suppose give me some kind of motivation, perhaps subliminally at first but the way I eventually saw it was just as though a lot of people had fallen into some kind of rut, almost a 'that'll do' attitude, my excuse was that I had been ill and I am now on the way back, so please tell me,what the FUCK is your excuse!!  
        I suppose I had a change of attitude that was a direct opposite  to theirs, just because I was back at work did not mean I didn't have to shave for a week or change my shirt and trousers every other day but to a lot, that was the norm! 
         After sorting myself out at work first, this helped me to gradually start to regain a bit of my self esteem back, so you think it would have progressed further on into my private life, not at first.  I think on reflection that keeping up some sort of appearance at work, to your workmates, in front of your workmates, was me kind of saying....
     "I'm back, I've been down, some of you saw me down but that was then but this is now". 
   It took a lot of effort and I just did not realize how dented me as a person had become, with all of the other shit I had to deal with, personal appearance was certainly not high on my agenda.

T-Shirts and Jeans

     When work was over for the day and I was at home, I felt that I had nothing to prove to my family, I was just my wife's old man and to my kids, I was just Dad and that was as far as I was concerned, enough. I lived and died in T-Shirts and  jeans, or more often than not, T-shirts and shorts. Now this went on for a while, I would come home from work, usually tired, very tired.....fucked actually and so after having a wash I would just grab the nearest items of clean clothing and as far as I was concerned, fine, that'll do.After a couple of years, a pattern started to form and then one of my kids said to me, "Daddy you always wear that T-shirt ( actually I didn't, it's just that they always seemed to be black) and you always wear jeans...why"? My answer at first would be the same,  because they are comfortable, they are universal, they go with anything!  Now maybe that's true of the jeans but the black T-Shirts were for an altogether far different reason, maybe subconscious, maybe not, probably because as far as I was concerned and probably still am, MS, this Bastard Thing was, is and indeed always will be... black. Now a very special friend of mine who is my therapist and also an Angel (to me anyway), once asked me a question, what colour do I associate with MS and without any thought, straight away I said black, this in turn took her by surprise, the fact that I answered straight away and then quickly went on to another subject,  I had simply dismissed that subject matter and just went on to the next, she just smiled like Angels do and said that we shall have to work on that! 
       Now that does not mean that I was always in a black mood, just that and  I know it sounds corny, a bit of a cliche even but there was very little in my life that I saw, at the time as colourful! When I say my life,  I meant my inner life , my own thoughts, my own visions, obviously me being totally selfish as this Bastard Thing is so good at doing to us!  Now, if I were to think hard about that statement, it was a very self deprecating state of mind to immerse myself in, it was almost like I was giving in, 
     "Ok MS, you win, I don't want to fight you anymore, you have got what you wanted, I can't be arsed to take you on anymore, I can't win, just put me down as another tick on your scorecard!"

  

                  

 Nobody can do it for you!

      It can take a lot of effort to pull yourself up, to start allowing life and living back into your heart, I know that is easy for me to say  that, I know, I just did and I would be the first to admit to you all, it's not easy, in fact it is fucking hard, lots of rows and disagreements you will encounter, no doubt about that, you will upset people along the way but ultimately you will be the one most upset. When you finally realise just how far within yourself you have become, your own comfort zone is all you think about, and you do not like leaving it for too long, this is what I have always said about this Bastard Thing, it is such a selfish condition, it is only you who knows how you are feeling, and ultimately it is only you who can do something about it. You must not let yourself withdraw to far because you will start to feel too safe, you are in a place that you are reluctant to leave and you are in severe danger of staying in there!  As I have said before on numerous occasions, it is easy to go in there but it's so hard to come out, especially if you cannot see what all of the fuss is about, don't get old before your time, live life as much as you are able! 

I shall keep keep On Going....because I want to!

               Being in a position to still be able to work, work that I can manage and more to the point, is mutually conducive to us both, the Company and of course me, what seems to be said to me more and more lately, the subject of me retiring, it just keeps coming up!  Mostly by people who still think that I must be crazy to want to still be working and as I mentioned recently, it is a subject that has got me questioning myself, once again!  Do I need to be putting myself on the line all of the time, I must be mad to be doing this, I don't need to and most of my colleagues are aware of this fact, I really just don't need to! 
        However, at the end of the day, I just want to, I know that at the moment at least I still can, I can contribute and still be a valid member of the team, I know I work just as well as them and more to the point, I suppose to my credit, nobody from above is complaining about my work either. 

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Keep on working as long as you can!

                                                       I suppose what I am saying is, 
"If you want to, if you still can, there is no reason on God's earth why you me or anybody has got to stop working, it is the very notion of working that keeps so many of us moving in so many ways, whether it is very basic or still making an active, physical contribution!  Of course even now there are times when I think, especially if I have had a shitty day, maybe as a result of an MS issue, maybe just because all that I have encountered on that day are dickheads whose sole purpose in life  has been to do as little as they can, which in turn means that I have to do as much as I can to make the day end well. As I have said before on many occasions, because I have never and will never use this Bastard Thing as a shield or any kind of reason for me to be treated differently, a lot of people treat me no different from anyone else, which is the way I want it and because of that reason, I sometimes have the reputation of being a mouthy sod.  Fine, guilty as charged but why should I look upon some lazy fucker, who just goes through the motions, paycheck to paycheck and remain quiet, I used to,  Christ I used to but nowadays things are different, I'm different, I just find it so difficult these days to ignore certain things that are said or done (or not done), if you're fit and able, no excuses, just earn your money!  It is, I suppose that  being the way I am, a little fiery (not nasty), this is what keeps me going, keeps me worthwhile being in the workplace, keeps me vibrant if you will, and I know that if I was the opposite, I would be too forgiving, far too meek and mild through fear of upsetting not just my paymasters but mostly through fear  of pissing off this Bastard Thing! If it wasn't for that reason and that reason alone, then and only then I might give serious thought to jacking it in and retiring, so because of the way I am, I have character by the bucketfull, with a dash of anger thrown into the mix, now that may sound pompous, maybe I'm blowing my own trumpet, whatever but hey, may as well do it myself 'cos nobody does it like I do it, now do they!;)

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The Threat of cuts!!

             Ok then, the cuts to benefits or ‘threat’ of cuts that is now looming! As I am still lucky, let's say fortunate as I always do anyway,, to still be able to work for a living and apart from very early on when I was first diagnosed when I was house bound for nearly a year,  I received  SSP topped up by the Company I work for(which I might add, the first time I was off I had to pay back through my tax contributions of course, then you got nothing for fuck all, this was when there was a Labour Government, however the second time I was off I did not have to pay my SSP back, that was under a Conservative Government) I still work full time, for a company who know all about me, who have always accommodated me with any help I may have ever needed, so I suppose I am fortunate for sure. However, I am very aware of the help that some of us need, by that I mean financially, especially to those of us who are blessed with having to deal with this Bastard Thing! The few benefits there are, are always gratefully received and whenever there is 'talk' of them being taken away, quite rightly, this sends alarm bells ringing all over the place! Osborne's latest budget has done just that, caused huge anxiety to some, turning into fear when these proposals look like they could indeed, become a reality. So they want, or should that be 'need', to slash the amount that is paid out in benefits each month/year, fair comment but the problem is and always has been, who is entitled to benefits in the first place! Unfortunately we live in a society that has dished out benefits to so many people who are not entitled to them in the first place! Surely it would be far more prudent for the Government bean counters to once and for all address this problem, we have all seen the programmes, heard about all of the investigations, we all know who is and who isn't entitled to benefits, in one way benefit is a right, not just a handout, we are not talking pocket money, I firmly believe that if you have paid in through paying your taxes over the years then you have the right to be looked after, no question! There are people who need these benefits because they cannot work, they genuinely need financial support, and nobody wants financial help if they can avoid it, pride and dignity are two emotions that most people are reluctant to give up easily but if you need it and are entitled to it, yes please and thank you very much! Unfortunately the system is overloaded with paying out for Adult Social Care and that could mean that if you have not made provision for your future, we could so easily fall into that category. It would be great if we could all go as far as life takes us without being hit with some sort of ailment, that would be Utopia but as we all know, real life is a bit different and as romantic as the idea seems, none of us die young to stay pretty anymore, medicine has gone on leaps and bounds in not many years but personally, I am a strong believer in quality over quantity, if you get my drift.......just saying.

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Then, there are those that piss in the water supply!

      The other problem of course is the other category, the one where the cheats all hang out!  This lot make a huge difference to the amount that the Government are able to put aside for benefits! So why are steps not taken to reduce the size by looking at and reducing or even stopping handouts to those that are not entitled!!!  No, the Government look at the benefits paid to the disabled, worries the crap out of them, with all sorts of proposals to 'overhaul' what is paid out, when really the cheats and the spongers are the section that they should be looking at, these are the shits who should be called in for interviews, now that is the section of society that think it is a God given right that they can claim for everything,!  Just think of the money that could be saved and diverted into the areas of society that need help, not want it but need it. These are the ones who have fucked it up for everyone after all!

         Sadly, this is something that cannot be done overnight, to be quite honest, how the hell do you start to sort out that mess anyway, it  has gone on for too long, years in some cases but something has got to be done. The Government of today and indeed future Governments, have really got to pull their thumbs out of their arses and tackle this issue, rip up all guidelines of the way that the current benefit system is done and start from scratch.....

just saying!

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Stop Press!

So George Osborne has had a 'rethink', no major changes to disability benefits, for the moment at least,  it's almost like he's saying,

"Ha ha, got you, only kidding!"

     Well Mr Osborne, start looking at the 'bigger picture' when it comes to seeing where 'our' taxes go will you, picking on the weakest section of society is just  bully boy tactics and it's not the answer, you always go on about being fair to everyone, just remember, people always remember a bully, that title sticks forever and disability does 'not' differentiate who you vote for, disability is Universal,.....just saying. 

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       To finish off this chapter, just indulge me with a few seconds of your time,  a very special friend of mine is going through some sadness at the moment, not MS related thankfully and I know she will come through because that's the sort of person she is, oh! did I say she is a witch, I didn't, well she is,  she is waiting for that big old rattler to pick her and her old man up and take them to wherever they want to go, there is space waiting  up on the roof where they will lie down, kick back  and look at the stars in that big old sky and that big old moon up there will be looking down at them, giving them a wink and a smile, you know the one, that special,
             "It's Ok, everything is going to be fine" type of  smile.

Gawd Bless Ya Witchy Woman.

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Hope that life is being good to you, so until next time, 

just keep on keepin' on because...... that's what we do,

Bombs Away Dream Babies. XX

Same Shit....different year!! 

 ( or..... the visitor that just won't go away!)

      Ending an old year is a good thing for us MS'rs, especially those of us who have been fortunate, (notice I still won't say 'lucky'), but again,  those of us who are and have been fortunate to  emerge into 2016 relatively unscathed, physically that is, a kind of sigh of relief is in order. In my case, that side of me, the physical that is, has remained pretty much ok for six months or more, so I suppose I am in a period of remission, thank God or whoever the Hell is keeping an eye on me, so I can still go about my business as a 'Walkie-Talkie' without having to bother too many people. So, as you all know by now, or those of you who have read my blog since I started a couple of years ago, my history with 'This Bastard Thing' from those dark days of being first diagnosed and on to my rise and occasional fall since, I now feel that I can talk about M.S from a different viewpoint, from the viewpoint of a man like myself, who and this time I am going to say it,  has been LUCKY so incredibly fucking LUCKY that my body has not been ravaged by ....This Bastard Thing!

During the recent Christmas holiday I was quietly becoming a little...worried shall we say, did not have a clue as to why but things were, or seemed to be, working against me and I soon began to realize why!  The Christmas period should be a time when I just kick back and enjoy life for a few days, but it is not for me, it is a time of stress, some anxiety and a whole shitload of hassle usually or mostly from people who just don't get it or understand what I am all about!  It is because of all of these ingredients that come together into the same pot each year that I have, rightly or wrongly turned my back on Christmas, or at least wish for it to move along, lets just kick start the New Year! It was great when the kids were small, it was great when 'I' was younger, however, personally speaking, Christmas and this 'Bastard Thing' just do not mix. I try every year, I promise to try and enjoy those few day's but something just will not let me......oh, that will be me,  so New Year's resolution, must try harder. I know, I shall brew my own Christmas Ale, make it really strong, strong enough that after a couple of pints, your face falls off and I shall call it.... why of course, 'This Bastard Thing', only to be drunk at Christmas, makes perfect sense to me!

'THAT' TV programme!!

Ok so we all saw it, watched with a great deal of interest, very emotional stuff, very 'powerful' stuff I'm sure that most of that night's audience would agree.  It made me think that perhaps there is hope out there, perhaps there are things that can help, not 'cure', but certainly make life better, a lot better! However, the cynical side to my nature made me do a lot of thinking, why is it now that the majority of us have only just heard about this treatment!  Obviously the subject of 'stem cells' is not new, it has been proved to help in lots of conditions for the human body, I had heard of the inroads being made in seeing how this can help with working with M.S but that was about all, then this programme comes along that talks about what it can possibly do to help in the future. 

        Four people with varying degrees of RRMS are chosen for pioneering treatment being offered,  to see if their symptoms show noticeable signs of change once they had embarked on the trial. They all underwent bone-marrow transplants and take on a course of chemotherapy in exactly the same way that someone suffering from cancer does.  The four guinea pigs (a horrible term but very apt in this instance) all responded in different ways, some showed 'gradual' signs of improvement and some more 'instant' and one guy, well, it was almost like seeing a miracle in action!!  The programme did let us know that it is still a trial and not to be considered a cure, if only, we would all be queuing up at the doors of our Doctors, our Neurologists and all of those with White coats and booking in for all that it takes, we don't care, if it puts us back together again, then by Christ, it goes without saying, we all want some of that!

     However, it goes on to say that it is not for everyone, those in the early days of diagnosis could 'potentially'  benefit a lot more than those who have had M.S for much longer where damage has gone on a pace, it also mentioned those  who have PPMS are too badly affected for much reversal if any to take place.  I must be honest, I felt at first that too much emphasis was put on it being a cure which it fundamentally is not, maybe I was overthinking it too much but after watching the programme again, the ongoing trials worldwide could mean that it is a possible treatment, good for some, not all but something that could possibly help a hell of a lot of people.  If this means being able to live a relatively normal 'drug free' life, that has got to be good for us all, the main battle then would be with the Pharmaceutical companies!  Those who make those particular drugs for MS treatments, obviously it is not in their interests to whole heartedly get on board with this treatment and remove it from the 'guinea pig' level and make it 'mainstream'. Surely it would be in there interest to add their name to it, to financially get right behind it!  Just think of the kudos it would bring them, their stock value would go through the roof and let's be honest, there are plenty of other conditions and requirements out there that they could still manufacture drugs for, it all sounds so easy to me, is it because this stem cell/bone marrow treatment is potentially a one off payment at a cost of around £30,000, does this fact frighten them when you put it against the cost of their drugs that are manufactured for MS treatment? Perhaps I am being too cynical yet again but that cost has got to be taken into consideration because that is a big wedge of cash and no mistake!  Some MS'rs could afford and indeed are in the financial position to take the chance (risk?) but the vast majority of us are not in that league unfortunately. 

   Am I looking at it in a far too simplistic way, am I being too cynical, don't know, I'll get back to you on that one, so far at this stage of the treatment results, it is far too early to use a word as powerful as 'CURE', it is something that could help in the future, let's all hope it is not too far into the future, and it is nice to know that these trials, although still in the very early stage, seem to be making some sort of progress,  just saying!

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     Wouldn't it be great if there is something out there, something or somebody just working it all out for us, just adding the finishing touches to that elusive 'thing' we all want, the answer to all of our hopes, all of our dreams, just to be given that one chance that it will be alright but it is so sad to think that so much of our destinies are governed by money, how much things cost! 

"Sorry, it costs too much so you can't have that, try this, it does not work anywhere near as good but it's better than nothing".

I know that money is not necessarily the be all and end all but I believe that we all are entitled to try anything that there is going, whatever the treatment, whatever the drugs, more importantly, make them affordable, why the hell they develop things that seem to be out of the range of most of the  people they are aimed at, why is that, it makes no sense to me! If there is a chance, let us take that chance, so what if it does not work, if we go into it with no guarantees for a successful outcome, at least we have been given an opportunity to try, we have been penalised once with the shitty hand that we have been dealt and who wants to be penalised again to get a better hand,  nobody really, so for fucks sake, make it affordable will you!......  just saying! 

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         During these past sixteen years of living with this Bastard Thing, apart from the physical problems that I have had to confront, my main difficulty is  the way it has played around with my head!  I don't mean in a physical way, although it has danced a fine old fandango up there during that time, vision, headaches, speech, taste, that wonderful thing that sometimes smothers you, M.S fog, you know, all the usual shit that we all live with. No, what I mean is something a little deeper, a bit nastier shall we say, something that is all too common for us club members.  I know I have touched on the subject before but I feel it is worth mentioning again.     DEPRESSION, that is depression related to M.S more to the point, how our nearest and dearest, sometimes, still just don't get it! It is sometimes as if there is somebody shadowing you, the person or image that you project in front of others seems to be working to it's own agenda, you are just unaware of the person that others see. This is where this 'Bastard Thing' is such a devious condition, sometimes if you are too weak willed to fight it's mind games, it can make you appear to be so cold, so uncaring, so single minded. You seem to spend such a lot of your time, well I know I do,  explaining to people that you are really a nice person, so for Christ's sake TELL ME if I appear to be the opposite!!  What's normal to you and I, can come across totally different to other people, sometimes a perfectly innocuous comment from me, or so I might think, can be a very cutting comment to somebody else.  As we all know, having this 'Bastard Thing' is a very selfish condition to have, only the victim knows how they feel, some of us show obvious signs, the way we move, the way we walk, sit or stand, as hard as we try, you can't easily disguise something that 'aint right' that is physical, however, a 'slight' facial expression, however innocuous, can project your pain to all and sundry, you may think you are hiding it but there are only 'some' people you can bullshit to!  However, it's what is going on inside that is harder to detect and even harder to admit or even to just acknowledge, all of these factors make it harder to know what to do. You may think that nothing is wrong as far as you are concerned, you cannot tell that there are things about you that are different, and if like me, you sometimes get annoyed at people who think that you are acting differently, and usually not in a good way, so, as the actress said to the bishop,
      "For Fucks Sake tell me, 'If I Don't Know, if you don't tell me, I'm none the wiser!" 

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     Since I have come to know a lot of MS'rs, especially in the last four or five years where I have allowed myself to mix in this wonderful world of ours, there are certain things I pick up from being in the company of other club members and I'm sure they are able to do the same back to me. Most occasions when we meet, the usual " how are things in your world", is usually met with, 

   "Pretty good (pause....) at the moment, all is good, what about you?"

                 Then again, there are some occasions when things are not that good, for whatever reason it might be, no reply is given nor is it needed, usually a 'gesture' followed by a deep sigh, but another MS'r always knows, we can say things to each other without fear of sounding patronizing or condescending in any way because, we know how we feel, we know what is going inside our heads, in a funny way, not a perverse way, we understand because we can relate to each other!!

      So, if you haven't already, seek out your local MS Trust or MS Society, meet up with other MS'rs, compare notes, have a laugh or a cry if that's the bag you're into, it may only be once a week like me but you will be so glad if you do, just don't try to take this 'Bastard Thing'on by yourself, share the burden, I've said it before and I'll say it again,

                     'YOU ARE NOT ON YOUR OWN'! 

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   I will be the first to own up to the fact that I sometimes do become very withdrawn, very morose these are very obvious signs that things 'aint right and as heartless as it sounds, I just want to be left alone. It may be at home or at work but the two sides of 'you' that others see, are at times so different, it is fucking scary, more so because 'you' do not see...what they see!

                My mantra, my philosophy  is simply this:-

 The darkness that surrounds me at the moment, is not my fault, I am not blaming anybody else either,  you did not give it to me, it is of my bodies own making but I hasten to add, certainly not of my choosing.

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              I genuinely thank you for pointing it out to me, until you did, I was blissfully unaware of just how I was coming across and above all else, just how dark all around me had become. So now I know, I will do all in my power to climb out of this hole, nobody pushed me in there in the first place so I will do all I can to get out on my own, in my own time and my own way.....BUT!!!!  

          I know that there are people who can help me, they know I can contact them if I need to and they will always listen, they are not there to advise me, just to help me find a solution.  It's a tough thing to deal with but if you just look at it as a temporary thing and not permanent!

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          I'm thinking of having some laminated cards made, so I can hand them out (hahaha), seriously though, it is something that I am acutely aware of and try to do my very best to avoid, as we all know, that is easier said than done! I would be lying if I were to say it does not upset me because it does, very much so, especially because I might not even know!

          I seem to be able to ride this particular storm a lot easier in my work life, doing my 'work' is the thing that stops me from thinking about this 'Bastard Thing' too much, in fact I deal with M.S and that part of my life far better than I deal with M.S and my 'real' life! That is still the part of me that requires 100% of 'everything' and after all of these years, it doesn't get any easier because I'm still in denial I suppose, it's a lot better, but I have to keep building upwards, I occasionally slip back down, which can be, as we all know, very demoralising but I've got to keep hacking away at it. The most important thing that I need, is for people to tell me when I'm being a total shitbag, a complete tosser!  I don't want people to be kind and say nothing and I certainly do not want to be treated any differently because of this 'Bastard Thing', why should I even expect that, Christ, it's not their fault.

                 The lyrics to this song are I suppose, about me singing to myself, just saying!

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          I have recently heard a song, a song which had a good riff to it, a song that ticked a lot of boxes for me, then I started to listen to the words and I just had one of those...

 HOLY FUCK moments!!  The lyrics to this song could be an MS'rs theme tune, the Big Black Cadillac could be anything you want it to be, your target to aim for (not 'goal', I hate that word!!!), whatever,these words brought tears to my eyes, they are so profound it cut's to the bone and it just made me think...HOPE.

Glad to be back with yet more ramblings of my life with this 'Bastard Thing', another year, another set of problems to overcome and maybe just maybe a bit closer to getting the thing we all want, you know what I'm on about....

Until next time, stay well,

Bombs Away Dream Babies.X

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An unwelcome Visitor. (The Conclusion)

          None of us like this 'Bastard Thing', none of us like what it has done to us as individuals, more to the point, what it's possibly going to do? You can't predict what is going to pan out for you, so we have to like it or not, take each day as it comes! Not an easy thing to do at the best of times, especially in my own case,  but obviously, my own story is  far from unique and there must be plenty of you out there who have a tale to tell!
            As it is well documented, it is no friend of mine, it never was and I am afraid I don't think it ever it will be. This mutual hatred is what has kept me going this long, of that I am in no doubt but recently perhaps, even I have started to mellow shall we say, not crumple, heaven forbid, just mellow a bit! 
      Let me explain:-
    Recently at work I met a young man, purely in a heterosexual way you understand (and anyone under 50, to me is young!) we were having a good chat, putting the world to rights and then the subject of lazy shits who make a habit out of swinging the lead entered our conversation. We were yakking about people at work, a very large workforce it has to be said, I come into contact with all forms of human life during my working day and then we threw the net wider and ended up talking about people of that ilk in general not just at work. Both of us agreed that there are some people who just get away with murder; these are the rotten bastards who spoil things for people that really need help. We laughed and became angry at pretty much the same things, you must understand that we had never met before but we just seemed to be getting on I suppose, there was some really good rapport between the two of us. We were just about to finish having our chat and he just stopped and said to me,
    "There are people that really piss you off aren't there"
    "Ain't that the truth, especially the bad back and snotty nose brigade" I replied'
    He stared at me for a few minutes and then said
"are you that guy who writes a blog about M.S? ... you are aren't you...you are Martin aren't you?"
               I was a bit taken aback for a second, was his attitude towards me going to change? I immediately became defensive, not one of my best qualities and then just thought, what the hell, he seems a genuine enough guy so I replied that I was the very same and much to my surprise he then held out his hand to me and said that it was nice to meet me and then he just came out and said,
    "We are in the same boat, I've got M.S too!" A bit of a strange one, I was not too sure how to respond and on a rare occasion in my life, but as crazy as it sounds, I was genuinely pleased that I was no longer the 'only' one at work, it felt like after all these years, I could share my burden with somebody who knew what the fuck it felt like!!        It turns out that he had visited Occupational Health at work and although my name was not mentioned, he was aware that there was someone else within the company who had M.S and that that person wrote a blog. More often than not, it is someone's wife or brother or sister, or they know somebody who knows somebody, that type of thing but never before have I come face to face with a colleague!
       As I have said so many times before, I am SO judgmental about others especially when it comes to M.S but on this occasion almost at the same time,  we both said how well we both looked! He had not been diagnosed as long as I and he was not sure what form of this 'Bastard Thing' he had and he was still waiting confirmation. He then said he liked my blog, and he laughed that I sound in 'real life' as I come across in this blog, I think that was a compliment, but I apologized for my 'choice' language and  I thanked him and then we proceeded to 'compare notes'. I have only seen him a couple of times after that initial meeting, and I recently heard from a colleague that he has transferred back to our main assembly plant in Oxford but, the point I am making is this, he is dealing with it in a brilliant way, carrying on with his life, running marathons for fucks sake, he goes to a gym and he keeps himself fit, don't you just hate that, he may have his share of demons but he seemed to be a forward thinking guy and he keeps the 'negatives' well hidden!  

        Coming face to face with another M.S'r  like him, especially in a work context, has made me think. He is making the most of a bad deal like me, but unlike me, he appeared not to be an angry, cynical person, or at least not 'openly', I am a nice guy I really am but I could be better and I don't want to let this thing hold me back any longer, I suppose he is just an OK Dude like me!

         Now more than ever, I have come into contact with other 'club members' on more or less a weekly basis and unlike me, virtually all have in some way shape or form, accepted having M.S! Some have almost straight from the outset, some when it was obvious that their own symptoms were getting worse each time they had an episode, but all had decided that they had no choice and so acceptance for them was a lot easier to deal with. This is an issue that has often made me look deep within and question myself. How would I be if I allowed myself to 'come to terms' and yes, even go as far as to accept this Bastard thing!  Now that my friends is a tough one to answer, If I had come to terms with it, would I be better at dealing with it, don't know, would I be a different person to the one I am now, who knows. My wife thinks that I would be a nicer person, not that I am a total shit but perhaps more like I used to be. I know that I would not be so hard on myself, perhaps I would not be continually questioning the way I do things, the way I deal with certain issues, the way I am with some people. She is forever telling me that until I fully accept it, I will remain an angry on the inside, I suppose I am still very much an angry and a bitter person.

        Of course, she is right on both of these things, but just scratch away at those layers and you will find sadness too. It is the sadness that I don't like having to deal with, I don’t like facing it, I don’t like having to, I know life will never be as it was, I certainly can't put it right but ultimately it is me that is in charge of the person that everybody else sees! There are times, thankfully when I am on my own, the sadness really hits me even now and it can be so fucking 'crushing',  usually with a glass of red in my hand, meeting a person, lyrics to a song or words from a book, could be anything, fortunately the feeling does not last too long, but I am guilty of sometimes wallowing in it, being on occasion a bit too morose.
      I admire those that have faced up to and indeed been strong enough to ‘accept’ their lot.  Even to this day, I still feel  that I am not quite a fully paid up member, even after all these years! Probably because I am still able to work full time, maybe because I manage to keep a lot of M.S symptoms at bay, some of it is dealt with by some of the medication I take, maybe my 'stubbornness ' is a great help too, I think so, maybe the men in 'white coats' think otherwise, but hey, what the hell do they know!

          However, would I be in a different place if I had accepted the diagnosis all those years ago, I just don't know and probably never will? I still have feelings of guilt, should I be more active in the M.S world, should I engage myself more with M.S? The truth is, although I have met some lovely people in the last couple of years and I am SO lucky to communicate on a special kind of level with them, please don’t misunderstand me, I don’t wish to get all hippy-trippy on your arses but I speak and email with some beautiful 'kindred spirits', an Angel, a Fairy and the odd Witch or two (yes that is what I said, keep up for Christ's sake!) they know who they are, they are special to me and I cherish their friendship.  I am nowadays very comfortable with those friends of mine that just 'happen' to have M.S. who will talk about other things as well as M.S, they don't want to be talking about this 'Bastard Thing' ALL the time, and neither do I,  I don't want to read about it ALL of the time and neither do they.

      I  know that, without doubt, allowing myself to mix with other MS'rs was one of the best things I did, I needed to, it helped me to come to terms with so much, by no means all but for helping me to step over that line, I will always be truly grateful. One of the best things I have ever done is to do this Blog, to be able to unload some of my bullshit onto you guys, laying open my soul and hopefully sharing part of my journey with 'This Bastard Thing'. The feedback has been truly humbling and if my tale has helped in some way, you are truly welcome.
      So,  after a great deal of thought, I have decided that 'the Unwelcome Visitor' is with me forever and my story has now come to a kind of conclusion, it's not a case of me throwing in the towel, I am certainly not giving in to it, no chance of that happening but I shall 'bite' this particular bullet for better or worse, and just try and get the balance right.

      The next time I visit M.S via the medium of 'blogging', who knows, it could be to let the world know that I have at long last been called upon by a 'WELCOME visitor'!
       
Right then, plenty of other stuff I want to blog about and when you 'blog' it's a bit like having itchy eyes, you've just got to rub 'em!...and my other alter-ego, 'Sleep That Burns' has got plenty to blog about, so I shall still be about !
       
     So, I wish you all well, thanks for joining me along the way these past couple of years, don't forget to question everything that the 'white coats' tell you, make sure you keep drinking plenty of water and Red wine, don't forget the Red wine, 'cos it is good for you....oh yeah, and make sure that you keep 'spitting this devil in the eye' at every possible chance you get.
                 

'Bombs Away Dream Babies' XX

(Doc Martin has left the building.....)

Now YOU, listen to ME!!

     A few months have passed since I last did anything on my 
'An Unwelcome Visitor' blog, perhaps the break was good all round because you may have been getting thoroughly pissed off with my ramblings and I was definitely in need of a break from all things M.S.  
         Unfortunately, however hard I have tried to distance myself from 'This Bastard Thing', I can't, like the rest of us, avoid going any great distance (no pun intended) without thinking about it, it is not an  easy thing to do, it is always there, it always will be and it will always be working it's 'unwanted' magic.

             During these past couple of months I have had some run-ins with the powers that be, in my case the ones in the WHITE COATS!!!  My feelings towards these people, by no means all of them, just a few in my case,  have reached a bit of a low and when you meet one who thinks he can make sweeping decisions that have the potential to undo all of the good that has been done thus far, then you go on the attack!

      It has taken me a long long time to deal with the fatigue issues that come with having M.S., to find ways of addressing cognitive and memory problems and when the opportunity comes along where I can try medication that helps me deal with all of the aforementioned, I have always been a willing host, never a problem, bring it on. So when a pill comes along just over 18 months ago, that changed everything for my family and me, I refer to Modafinil, or as far as I am concerned, the wonder drug, my world changed almost overnight. I could now go through a whole day without the clawing effects of fatigue slowing me down, I am able to think clearer, my brain is sharper, not like it once was but more positive in the way it processes and deals with information.  Now let's get one thing straight, I am no fool, I am under no illusion that these 'gifts' are medically 'enhanced', but I DON'T CARE, they have enabled me to lead a 'life', enabled me to remain working, to be as normal as possible, for that, I am truly grateful.

 I am fully aware of any potential problems that there may be with my heart along the way, although nothing has been proved,  I have ECG's and BP checks and blood tests to keep an eye on this and if things in that department are obviously not going right, then I will mention that to my Doctor. Those of you who have come to know what I am all about are well aware that I was unable to work for long enough with two lengthy 'episodes' in the past, so I want to stay working for as long as I can and if I were to be perfectly honest, dying from a heart attack frightens me far less than spending the rest of my life in a wheelchair and being unable to do things for myself.  As I have often said in the past, please don't judge me on my thoughts about my life, they are mine and mine alone, I would not dream of saying they are the way we should all think, I know I have said that before but I mean it, yours is yours, mine is mine.

       On the morning of the visit with the Neurologist, I was in a slightly anxious mood, things as far as I was concerned were going along  just fine and I did not know the person I was about see, he was as new to me as I to him, little did I know that in a few moments, my world was going to be halted in it's tracks!  On reflection, I should have realized things were not going to go well when no handshake was offered to me and hardly any eye contact given, "WARNING,WARNING"!! 
    The guy had obviously, well to me anyway, not read my notes, if he had, then he would have known more about me and my history with 'This Bastard Thing'. Look, if I had gone in there with an in-growing toe nail or some mundane everyday kind of ailment, then his time is a bit of a premium, in out, next! However as we all know M.S is a disease, an incurable illness, we are a pretty pissed off group of people and so a little bit of eye contact would not go amiss, now would it!!

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MESSAGE TO THE NEUROLOGISTS OF THE WORLD

' Learn these rules and there will be no problem!'

RULE No.1
 You the Neurologist must go out of your way to make you/me/us, feel comfortable about being in a consulting room.!!

RULE No.2
 You the Neurologist must have read our notes BEFORE we arrive!!

RULE No.3
 You the Neurologist must be understanding and reasonable to our situation and our requests!

RULE.No.4
 You the Neurologist must look at us, talk to us and treat us as the human beings that have just walked into their office, NOT as a number on a list!

RULE No.5
You the  Neurologist are NOT God, if you behave like God, we can always ask to see somebody else!

A REQUEST!

       Of course I bow to their superior knowledge on 'This Bastard Thing' but my friends, they are the fortunate ones, they are the lucky ones, WE the PATIENTS are the ones who have to live with
'This Bastard Thing' not THEM!

       Am I being too touchy about my recent visit with the Neurologist, was I not going in with an open mind, was I not giving enough 'serious' thought to the things that were being laid out in front of me? Well, having been told to stop taking Modafinil because :-

1. It is not recognized as a drug that relieves M.S symptoms and is only recognized for the treatment of Narcolepsy! - 
Why prescribe it to me in the first place!

2.It is potentially bad for my heart! 
I am fully aware of that and have my heart checked accordingly!

3.There is no proven benefit from taking it at all!

                   WELL EXCUSE ME!!!

        So you can imagine how I felt being told to stop taking Modafinil straight away and start taking Vitamin D instead!  How the fuck could a 'food supplement' manage my symptoms !! Well my friends, the rug had well and truly been pulled out from under my feet and within a few days of 'doing as I was told', things started to deteriorate, fatigue came back with a vengeance, cognitive problems started to re-occur more often, my speech became noticeably worse as did my swallowing, I was fast going to hell in a handcart!

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Not for everyone!

        I agree and I do appreciate that Modafinil is not good for everyone, I know some  people do not gain any benefit from it at all, and some people only gain a little, but with me, I gained back my LIFE and I was not prepared to give that up at any cost!!  Ok, so I tried Vitamin D as instructed, and it made me nauseous and gave me a blinding headache, was I taking too high a dose, was I taking too little, could this have been because  my mind and body had got into such a bad place because of giving up Modafinil, maybe, who knows, or was I so angry with the Neurologist for not listening to me!

      

       After those few days of anguish and heartache for me and my family, I decided to go back onto Modafinil and finish the supply that I still had left and almost straight away, those missing parts of me came back and with these came a decision from my wife and I to challenge the decision  and through help from my Doctor, a second consultation was to be arranged with another Neurologist!

CHALK & CHEESE! (good Doc, bad Doc)

         It was just over two months after seeing the first Neurologist when I was given a date to see another, in one sense I really wanted to but there was part of me that was really worried. Was it going to be a waste of time for me, was this one going to be any different from the first, was I going to have to rethink my whole future, that may sound 'dramatic' but believe me, that is how I felt.  The morning came for my appointment, I went into work as usual, mostly to take my mind off of what was possibly in store for me, well, for us really because the outcome would affect my whole family!  While we sat at the hospital I said very little, my wife tried to keep me talking and all I could manage were the odd yes and no, my mind was elsewhere.  My name was called out, not by the receptionist but by a man, I remember standing up and saying to myself, "here we go, this could go either way", we walked  in the direction of the voice and without realizing, I walked straight past the Doctor, if my wife had not nudged me  I would have carried on walking!!  "Are you Martin ?" when I realized that he was talking to me, I stopped and he introduced himself and held out his hand!! Straight away, I thought that this was a decent bloke, from the get go, he was going out of his way to make me feel at ease, so different to my other encounter a few months ago. We went into a side room, sat down and he asked me about myself, it was pretty obvious he knew a bit about me  and soon into the chat he asked me how I thought Modafinil was doing me good!  He then went on to explain about the bad press it had been getting, and did I know why, and as it happened, I did  know of the possible implications to me, obviously I did, I have done so much research on this drug and I think he was pleased that I was aware of the side effects that 'can' happen to some people.  He then explained  that he was a Neurologist whose  main interest is the study of sleep behavior, levels of fatigue and how it can effect people in different ways,  how it can be controlled with medications, in particular and  of great importance to me, Modafinil.  With his help and that of my wife, I filled out a chart which gave him a pretty good idea on my life in dealing with M.S fatigue so far, something I have never done since I have had M.S, as I have said before, all manner of drugs, you name it, physio, acupuncture, steroid infusions but I have never done this test. The test as you may know is an Epworth Sleep Score, it was one of those Q+A charts, the type that when you are completely honest with yourself, you tend to 'big up', make yourself look good, please stop shaking your heads at me, we ALL do it at some time! Anyway, some of the scores have been abnormally high when as in this case, assessed retrospectively and all points to 'secondary' as opposed to 'primary' Narcolepsy. I am so glad my wife was there because over the last fifteen years, I will be perfectly honest, I have subconsciously, or maybe deliberately even, blanked certain parts of my life out, I seem to have conveniently 'forgotten' how bad I once was, all of those bad days as far as I am concerned anyway are now 'locked' away in a box in my head somewhere,  I think it is something all us members of this shitty club have done at some stage, like it or not, there are plenty of the bad parts that we have tended to brush under the carpet, in my case those day's are very much in the 'then' as opposed to the 'now' category!!  After looking at my answers, then going through them with me, he was pretty certain that I also suffer from Narcolepsy which may have been triggered off by my M.S or the other way round, at this stage he cannot be certain which. This was one of those surreal moments, should I be pleased, should I be happy, although I was not shocked as such by this revelation, I was not too sure how to deal with the news at first, I suppose I was a little bit stunned!  Anyway long story short, he is happy for me to stay on Modafinil, because as you may or may not know, Modafinil is readily prescribed for Narcolepsy anyway, he recommends that I should stay on Vitamin D but I should try a smaller dose than I was taking because Vitamin D does seem to be of benefit to M.S sufferers. Also I am to have six monthly checks on my blood pressure and ECG, small price to pay as far as I am concerned.
      When the news did finally sink in, I fell very silent, well for me anyway, there have been many times in my life that I have been overcome with emotion especially during the past fifteen years but when he told me that I could remain on Modafinil, I was SO happy, SO relieved, I shook his hand with both of mine, I felt my life was back in the 'now' not in limbo anymore! I now have met a fantastic Neurologist to go alongside my fantastic Doctor.

       He arranged for me to have a blood/test taken which I gave that morning, this is to check if I have the HLA tissue type which is strongly associated with primary narcolepsy, strike while the iron is hot I suppose, he has also arranged for me to have an MRI scan, my first in nearly fifteen years, to see what changes have happened to the part of my brain-stem which is the part that shows the effects of M.S and also Narcolepsy, which is of interest to him in particular. I am pretty curious about that myself, am I worried, don't know, we shall see what the results will be and I shall share them with you at a later date.

       I came out of our meeting feeling like a different person to the one that went in there, the darkness and the uncertainty that had been hanging about lately had started to lift and my life, our lives could resume properly once more.  Having gone through all of these years with M.S has been tough, a lot of lows, physically, mentally and emotionally but then again all of us MS'rs go through the same, of course there have been plenty of  highs, there have been some good times, it has not all been shit, a lot of it without question but by no means all of it.  I am a very different person to the person I once was, fundamentally I am still a really nice guy, but there have been times when I have been a total bastard, virtually ALWAYS beyond my control and thankfully, not that often. My feelings as we walked to the car after my meeting with Doctor 'Nice Guy' were mostly of total 'relief' but I suppose on reflection it was kind of a bittersweet result, not only do I have M.S but I now have Narcolepsy as part of the deal, a double whammy, 'buy one get one free'. Apart from my wife and girls, and a handful of very special friends, nobody has been  aware of what I have been going through these past few months, it has been tough even just contemplating having my life thrown off course, corny,  perhaps, dramatic, maybe, I don't care, that's how it felt!

      By the time of my next blog, I will have been through the big metal doughnut, shown the results and discussed how things have deteriorated or not inside that thick skull of mine. I honestly can't say that I am bothered, whatever they find out, good, bad or indifferent, it will be more fascinating for the Neurologist to study than it will be for me to look at, it won't turn back the clock now will it! If anything comes from it that means the information can be used in studies of some kind, then they can use as much of my 'DATA' as they want, my brain is their's as long as I get a percentage of some of the royalties (hahaha) I reckon I'm worth a piece of that action and I would love it that  they rename it, the study of this ' Bastard Thing', got much more of a ring to it than 'M.S' don't you think, and it would be so cool if people went to University to study it, get a PHD in it,  see that guy over there, he went to Oxford to study Neurology and he is now a Doctor of this 'Bastard Thing', you're welcome! 

   

        One point I will make is this:-

I know that being reliant on this drug, or any other for that matter is not a good thing long term, but for the moment, if there are any risks to my health I am prepared to run those risks, if I was a young man, different story, your route map on life back then is so much different and as I am not looking for that elusive 'youth' pill anymore, just one that keeps me going, gives some order to my life, wrong as it may be to some, I just say "BRING IT ON"!

             So next time I blog,  I will have seen an updated image of inside my head, what that tells me, Christ knows, I am curious of course and contrary to what my wife thinks,I always knew there was a brain in there........somewhere!
             So until then, be as well as you can, always question what the white coats tell you, they know a lot, but they don't know everything!!!  
                         Bombs Away Dream Babies.XX