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. 

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

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!;)

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

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.

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

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!

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

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. 

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

       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.

  *********************************

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