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!

***************************

  

     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! 

       *****************************

         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!" 

**********************

     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'! 

*****************************************

         
   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.

************

              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!

************************

          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!

********************************

          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

******************************************