An Unwelcome Visitor   :-  Chapter 17

                                      Shit Happens!! 
                          The many faces of me and M.S!

            There are some days, some weeks even, when you just feel crap!  You don't know why, there is usually never a logical explanation for it, you just.....do!  There are as we all know, certain 'warning signs' that flash up to tell you this, in my case, my first indicators are my speech and my balance!  Stupidly, I still try and either ignore it or I just try and deny both of them to anyone that asks, sometimes I can blag my way out of it, although there are times, when there is just no point in lying anymore, your only kidding yourself anyway!  When this happens to me, we start with my diet, is it healthy enough, am I eating enough of the 'right' stuff, funny thing is, I 'always' think I am anyway, my wife has other ideas though, (told you before, she is a witch!) So, up goes the intake of greens and salads, cut out the biscuits, well... cut 'down' anyway, basically I just start to eat the good stuff, not always the stuff I like of course but plenty of pasta and chicken, cut down on the coffee, (any lower and it will be gone anyway!!) Then we start doing some more walking, get on the exercise bike, early nights help as well, try doing all in my power to keep this thing at arm's length!  It is just by my nature that I have to be on the go all the time and as I have said on numerous occasions, to relax, to unwind, to chill,  are art forms that I have still to master!  As we all know, when the tank is empty, it takes a while, a lot of effort and in my case, a lot of 'self discipline' to start to fill it back up! 

            You can only go so far when your energy supplies start to empty and I acknowledge this, the main problem is, knowing just how far and for how long, you can go before your body just say's no way Jose`!  So I have to watch out, as must we all, I know it has to be done every time, if I don't, I can't really moan about it can I, not when some of it, not all, is my fault anyway!  If only a cold pint of Guinness would see me right, I would be laughing (it is supposed to be good for you right!!)

Or could the secret to me feeling well be found in a glass of 'Red' perhaps, anyway, they both have a capacity to make me feel good and I'm sure my Doctor and even the ones that wear the white coats won't begrudge me the 'odd' glass now and again!

               As any MS'r knows only too well, there are many hours that you spend just thinking about your future, how long will this relapse last this time, will everything return as it was, what, however small  am I going to lose this time! All the things that you don't like to face but you are forced to because you have no choice, which incidentally is one of the shitty things about M.S,  you have no choice, it chooses for you!  It can be a very lonely time if you let it, so as hard as it is, we must try to be positive, to stay positive, think positive and remain so, God, don't you just hate that!!  I'm sure that all M.S'rs  just wish they could be negative just once in a while, so we never have 'alarm bells' go off at the slightest change to our health, behave like we used to, throw caution to the wind, just get up a bit later and things will be fine!  As we all know, that is easier said than done, in fact, it can't be done anymore, that is the trouble, we have to tow the line, we have to do as we are told or else!! Well, I am afraid that is something that I will NEVER get used to, I NEVER will and that is why I HATE and will always HATE M.S, does that make me a renegade, you bet your sweet ass, me and M.S are destined to NEVER get on!! Towing the line is such hard work , Christ it is hard but then again but  if Charles Lindbergh could fly the Atlantic on his own, not knowing if he would make it and to my knowledge, he didn't have  a chronic illness to contend with either, so there must be hope for us all, don't you think, yes, let's be 'hopeful' for a 'positive' outcome!

My attitude towards Religion since being diagnosed!

       This is something I was more, let's say 'thoughtful' about, in the very early days of me being diagnosed!  Religion has never played a big part in my life, I did my share of Sunday School, I was a boy scout and was a regular at Church parade every month, now that was only because I was becoming more aware and indeed interested in girls at that time of my life and boy scouts and girl guides would mix together and would start to even 'talk' to each other at church parade  back then! When I became ill the first time, I was looking for things to do, to fill the hours of mind numbing boredom in my days and there was a time, well numerous times, when I did think about religion and church!  I thought that there must be something they (the Church) could offer me that could 'lighten' my world and even on my many walks to get fit again, I almost stopped and went in my local church but I never got to the door each time! I don't know why, that desire, that need to go further, just was not there, I looked 'at' myself, I looked 'into' myself but perhaps that need just was not strong enough, I don't know! Or it may have been the 666 tattooed on the back of my neck, what do ya think!

                        My theory on this is that as I have said many, many times before, I wanted to deal with this wretched thing on my own, in my own way, no help from anyone and anyway, what's done is done,  no God is going to get rid of this thing, it was not God's fault that I got it in the first place!  Granted, religion in whatever form you choose to take it,  does help some people come to terms with it, it helps make them a less angry person perhaps, I don't know, whatever floats your boat, if it is good for you, that is great but I am afraid I still choose to remain on the other side of the door into God's house!  Before M.S, I managed my life very well and as the years have come and gone since, I still don't feel that I am missing out!  I am sorry if that makes me sound like an uncaring, arrogant or even horrible man, none of which I am and the way I feel about it is purely a personal thing, a 'very' personal thing, so please don't think ill of me!!

                              

 Have I become a 'spiritual' person since diagnosis?

             I think I have definitely become more 'spiritual' than 'religious', especially in more recent months!  Is there a difference, purely as far as I'm concerned anyway there is and there are things that I have become more aware of for sure! Six months ago, if someone had said to look inside myself and start to let go of my inner feelings, my inner turmoil, I would have probably told them to piss off, I can handle it, I don't need you to tell me where I am going wrong!!  As I have said in earlier chapters, I did need the help and I am so glad that I took it and as corny as it sounds, I saw the 'light',  the 'light' that 'I' have chosen! The hard work for me to do is to keep the bloody thing on and let myself believe that it is on for my benefit, it is helping me, I suppose it is just 'softening' my edges, lowering the 'barriers' that I have put up all around myself!!  Again, this is purely a personal thing and it is for me, very early days but very positive days at that and I would not dream of pushing my thoughts about anything on to anyone else, all I will say is that it works for me, so praise the lord, or whoever keeps turning that damn light on and off!!

The Seven faces of .....me dealing with my M.S!

HAPPY......I feel pretty good at the moment!

SAD...........It's come back again!

ANGRY.....I thought it had gone for a while, I was not expecting it to return, quite so soon!

SURPRISED..It's gone, thank Christ for that, things are looking up at last!

ALARMED....Give me a break, It's come back AGAIN, already!!

WORRIED.....I've not noticed that before!!

WHATEVER.....Fuck you M.S, do your worst, I'm a nice guy, people like nice guy's!  M.S, your a shit, nobody likes a shit!!

LIFE HAS TO GO ON!! 

AND IT WILL GO ON!! 'COS IT MUST GO ON!!  

GOT THAT, GOOD!!   Four strings, learn three chords that's all you really need and a multitude of songs is yours for the taking!

So until next time, I think I shall just 'spank' my Uke, such good therapy!!

'Bombs Away Dream Babies' gotta spit this devil in the eye now and then! XX

An Unwelcome Guest : Chapter 16


                               More Questions Than Answers!! 

                I was recently asked a variety of questions regarding me and M.S, some from  colleagues at work and some, more importantly some from the Neurologist that I saw last week at my six monthly check!  Both groups were interested in my responses, maybe for different reasons!  Anyway, answer them I did and I thought I would share them with you!
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                      Q. How often am I aware of my M.S?

            Kind of a weird one to try to answer and I had to think about it for a while because in truth, I am not made aware of it that often because it is always there I suppose and as I am sure a lot of M.S'rs out there would agree, you just get on with life, the job in hand, take each day as it comes, yadda yadda! This in no way means that you are unaware of it being with you, of course we are but I suppose you just get so used to it being there, you forget how you used to feel anyway! Now my wife would disagree of course, she would say that M.S is 'always' on my mind and it still calls the shots. On this occasion, I reluctantly have to say, perhaps she is right, of course it is and I really wish I was able to block it out and when I see other M.S'rs who are far worse than me, you would think that it would be easy to 'block' it out!  It should be, I wish it was and lately there are definitely  longer intervals during the days, during the weeks, even the months that I don't allow it to dictate to me too much!  That is why I now firmly believe that all M.S'rs should meet occasionally with other M.S'rs and realize that life for you 'aint so bad and see how others get on with their lives because at the end of the day, if you have too much time to think about it, you will only start to think the worst anyway! 
                   As much as they will disagree, your wives, husbands or partners don't really know what goes on inside your head anyway, they think they do, I know my wife does but she is a witch anyway,  but they don't, they can only see the outer you!  So when you wake up each day, if you can get out of bed, wash and dress yourself  and do this without feeling shagged out and then manage to get through the day at work with little or no problems, then you can say that you have won, then you can think about M.S because for that day,  you have come out on top!

Q. What do I think of other people's interpretations of M.S

                                             It used to annoy me a lot  because it was invariably incorrect, it was usually misinformed or just plain wrong! At least now ,thirteen years in, I have mellowed a lot more to the thoughts and opinions of others because I know that much more myself  now!  When I am learning new things almost on a daily basis, by reading about it myself on things such as social media, various websites and sharing blog's with others.  By doing this I feel that I am better equipped to give an accurate description of M.S to others, anyone who wants to know anything about this horrible thing, then I'm your man, ask away!  However, my only concession to this is and I must be honest,  If people want to know, fine, I will tell them but I do get extremely pissed off when they start to question what I am saying, usually with, 'ah but I have heard this, that and the other', or 'no,no that's not what I have heard etc etc'!  Well, if they have heard this, that and the other, why are they wasting my time by asking me in the first place, nothing personal but PISS OFF! 

Q. Do you accept help when it is offered?

This was a question that I really did not know how to answer, at least 'truthfully' anyway!  Sometimes I do easily but there are still many occasions where I am almost 'rude' to people who are offering help to me!  This is not 'totally' an M.S thing, it is more like a 'man' thing, certainly as far as I am concerned anyway and without sounding too dramatic, I will be this way until the day I die, I can't help it and it is still one of the main things that my wife and I disagree about!  For example, daughter number two's boyfriend, who incidentally is a lovely lad, is also a painter and decorator by trade and through my daughter, he got wind of the fact that we were decorating our bedroom!  Now this was to include painting the ceiling and my wife had, in no uncertain terms told me that I was not climbing any ladder to do this because of the potential issue with my balance!  Anyway,  my daughter's boyfriend offered to do it for us, my wife said ok straight away but I was very reluctant to start with, a fact that did not go unnoticed by my wife, my daughter and indeed, her boyfriend, who felt very awkward!  After much soul searching, I finally conceded and he got the gig , on one condition, I had to be out of the house when the painting was done, my only demand!  Stupid you may think but to watch or even be in the house, when somebody was doing the work that 'I' should be doing under normal circumstances, was, at the time,  more than I could cope with!  I am now ok with it, I realize that I was being a complete twat and he has done more decorating for us since then, I can't say I like it totally but I don't go out of my way to make him feel awkward anymore!

Q. Does drinking effect you more now than before?

             No and I'll have a pint of Guinness and a glass of Red to start please!!  Seriously, drink was never a problem to me before M.S and it still is not a problem to me but when I had my first attack, the part of my brain that was causing me a lot of problems was my cerebellum! This is the part  of your brain that is at the bottom of your scull and the top of your neck, this was causing me a lot of problems, with balance and speech etc and this caused me to feel drunk even when I had not  touched a drop!  So because of this and with the almost continual vomiting that I endured in those early days, I very rarely drank any alcohol at all!  However since those days are a long way off, I hope, I now am able to enjoy the odd pint or two of my beloved Guinness and I have been known to request a nice glass of Red!  I probably, like a lot of us, drink more than I should but I am a sensible drinker, a firm believer in 'a time and a place'.  Now I realize that a lot of you will perhaps be frowning at that but when you are faced with a life changing condition such as M.S, the last thing you want to hear are snotty comments about certain things that people still  enjoy, that if done in moderation, help you to cope with things, now I think you will agree, you don't have to be pissed as a fart to do just that, now do you!  Cheers.

 

Q. Do you enjoy socializing now and do you still like to have a good time when you are out?

       I do like to go out more these days but there was a time that I have spoken about, when I most certainly did not!  I enjoy social events, parties, meals, the gathering of friends and families, or rather I am fine once I am there but sometimes I can take it or leave it!  I do like to 'contribute' to events, I like to have a laugh and a joke, I enjoy the company of others now, I didn't for a long time but thankfully those day's are behind me now!  One thing about me and going out is that because of the change that has happened since M.S arrived to my personality, people are, at first not sure how to take me, am I serious, am I sarcastic, what is he all about, he's a great bloke, but!!  At first I failed to understand peoples indifference to me, I couldn't see what the fuss was about, were they imagining it, was 'I' imagining it!  Well to put the record straight once and for all,  I am probably one of the nicest, one of the funniest and above all, most honest people you will ever meet, is that arrogant, is it conceited  maybe but oh so true!   Look, I am just a guy who is trying to get his life back on track, trying to get back bits of him that have been stolen by this horrible thing, people 'will' understand one day, so until then, cheers!

Q. Do you think that M.S has affected your ability to have a loving and intimate relationship?

           You cheeky sod, mind your own business!!!  Seriously, in the early days definitely, no question, there was far too much going on to even think about anything sexual!  There was no room in my life for anything even remotely like a 'physical' relationship, Christ, I was hardly attractive for a start and the conflict between my 'body and mind' at the time was just all consuming!  With time, those elements to my life came back fortunately, although the 'loving' part was always there, that never left completely, there must have been times when my wife hated me, I'm sure of that but I suppose a good marriage is built on love and hate in equal measure. There were times when I did not like her, I just wanted to be left alone, to wallow in my own self pity! Although I have changed a great deal from the person that I was, from the person that she married, deep, deep down is the person that I always was, doesn't show himself all the time but he is in there, somewhere!!

                  To finish up this week, a question that the Neurologist said to me, which was a very nice question to answer in the first place!  She asked me how was I feeling at this moment in time?  I feel pretty good I said, no major problems to speak of, a few aches and pains but on the whole pretty good!  She took a few minutes to look up from her notes but when she did she said to me, and I quote.....' you are looking pretty good Martin, nice to see you looking so well, see you in October!  Those few words were so nice to hear, such a boost to me in general,  you know what,  I felt pretty good on the way home, my grin was from ear to ear and for that moment, everything in my world was...........pretty good! XX

An Unwelcome Guest: Chapter 15

                               The demands put on your marriage,                                                    your children and your relationships!

                 

                     As a married man I would be the first to acknowledge that maintaining a good marriage during these past thirteen years has not been a piece of cake, there are times when it has not been easy at all!  In fact at times,  it has been very difficult for both of us and also for my children too, on the other hand, it has been very  emotional,  rewarding and at times,  very funny, but most importantly, very loving!  When I was first diagnosed, so many things seemed to be hitting us from all directions, fear, confusion, anger and the all consuming sadness which was felt by us all not just me, although I did not realize at the time just how much it had impacted on my family!  As I have said before, M.S is such a solitary condition and you can't help but become very selfish, I know I did and there is no point in denying it,  I became a very selfish bastard, I was just too wrapped up in my own feelings to even notice the effect it was having on my wife and children! I would be a liar to say that, on occasion, things have got........a little tense at times, this is a normal state of affairs in most marriages but when M.S is thrown into the mix, well,  that makes for a whole new ball game. So the point I am making is that the person with M.S that has their life turned on it's head is not the only one, it is the WHOLE family, their lives are also changed forever!

               

                         I would be the first to admit that it must be incredibly difficult for the 'other' partner, wife or husband, to deal with the devastation caused by M.S, it's not easy at all and there are plenty of marriages and partnerships that have gone tits up because of this, no question!  Obviously, there are occasions when a marriage or relationship just cannot go on, try as you might, sometimes it just cannot be saved and it is best to just cut your losses and end it!  Some people just change too much and I refer to both parties in this instance, the physical and mental strain that it causes is obviously just too great and with those two ingredients gone, the sexual and the loving elements must soon follow!  You cannot blame anyone at all for being unable to carry on in a relationship that is devoid of any of these most basic of human feelings, so I firmly believe that there is no point in staying together only to end up hating each other!  I am very fortunate, my marriage is pretty good, we have had our moments that's for sure and things have been put to the test  from all of the above mentioned points but we have overcome them and thankfully, our marriage is good, taken a bit of work but good nonetheless!

             

                      We all need to have a person, wife, husband or partner who is someone who, will stick with us, who understands us, who knows the REAL person who occasionally gets lost in the fog of M.S! These people are so vital to us, we need them, it may be in the capacity of a carer, or just the loved one who is always there, either way, we need them and as I have said so many times before, this thing is not designed to be taken on alone, we need them, so cherish them!

                     When first diagnosed, my girls were six, eight and ten and so they were all very young, they knew something was wrong with their dad but not what was wrong with me!  During the years since then, they have all in their way, become more aware of M.S, what it is all about and what it can do and they have all at some stage , asked me questions about it, which I have always tried to answer as best that I can. However, their lives were always far more important than mine and as long as they led a normal, happy and stable childhood, that was all that mattered to me! 
                      As it is with anyone that lives in a predominantly 'female' household, things can get a bit wild and crazy at the best of times!  This could be queue's for the bathroom to dealing with four lot's of periods each month, which as most men know can bring terror and venom that  women are SO good at don't you think,  well it certainly scares the hell out of me anyway!!  This in no way makes me a misogynist, on the contrary, I love women, always have done but when it comes to the women in your own family, well, that is a whole different  box of frogs to deal with!!  That is probably why I tend to do a lot on my own, why I immerse myself into my record collection, why I crash about in my garage, why I lose myself in my P.C, lot's of solitary things like that, fortunately, these things are of no interest to my wife and girls!  Now don't get me wrong, I love having my family around me but there are times when I need a break from them and them from me!  Would I feel the same way if I didn't have M.S, maybe I would, maybe not, that is something that we will never know!!

                  I know for a fact that having three teenage girls in the house, has been at times, very stressful to me, my wife would disagree naturally and say that they are behaving perfectly normal, 'that's what teenagers do, even you were one once'!  Now that the teenage years are nearly out of the way, only one left and she is eighteen, the other two are twenty one and twenty three respectively,  so now they are young women in their own right but they will always be kids to me!  I feel that I have to constantly make the point to them that I will make a great grandfather, so don't think too harsh of me, don't worry, things will get better, trust me! (as long as at least one of them gives me a grandson, so no pressure there then!!)

                 We have tried to keep as normal a household as we can throughout the past thirteen years but at times it has been incredibly difficult for me to maintain this without it having an impact of some sort on my health!  Dealing with teenage angst is just one of those things that we all go through and indeed when we are parents later on, have to deal with and it is not easy,  Christ it's not easy but it is perfectly normal!  However, sometimes I find the demands of a teenage kid just something that I cannot deal with in a rational manner!  I cannot deal with their problems and mine too, if that sounds selfish then I'm sorry but that's me and I am not ashamed to say that I am so glad that the teenage years are mostly behind me now but once again, it beggars the question, 'how would it have been without me having M.S'? and people still wonder why I HATE it so much even now and by CHRIST I certainly do!  Anyway, rant over, I'm fine now!

       I will be the first person to admit that I am able to deal with 'little kids' far easier than I can with 'bigger kids', my coping mechanism just upped and left me years ago I'm afraid! All through the baby and toddler years, I was a good dad, the best in their eyes and even my wife would say so!  However, although I realize that there are some MS'rs out there who are more than able to cope with both, kids and M.S, without any problem at all.  These people have my utmost respect and I really am envious of them but as hard as I try, it is just so difficult for me, sad but true!  I do however, have a theory as to why this is the case and it is simply this.  I am so lucky to be able to work, I can still get about unaided most of the time, sometimes probably not the best way for me, certainly in a way that is different from other M.S'rs and because I have still to fully 'accept' M.S, I have to carry on regardless, at all costs, that must sound so selfish, so cynical and I am sorry if it does but that is just the way 'I' do things.  Due to me not being at peace with my M.S,  I am still an angry man which in turn has made me on occasion, be an angry dad (by no means a nasty dad), what do they say, we all have our shit to deal with!!  So nowadays, rather than get in a debate with a stroppy kid, I will just walk away from any potential row, usually end up making myself feel like shit in the process but it is better for me to do this, that is for sure!  However, if it is a row or a debate with another adult, then I'm your man, perhaps kids have a way of unnerving me more than an adult, I just don't know but I would be a bloody good comrade to have in the trenches on the Somme!  
             I cannot and will not put the blame onto anybody else, it is nobody's fault, you were just dealt a pretty shitty had and unfortunately you can't trade it in for a new one either! I cannot expect my children or anyone for that matter to walk around on eggshells for my sake, now that would definitely not be normal in my book!  On the other hand I find it so hard to be the one who should keep apologizing, if I was blatantly going out of my way to be a horrible git, sure, my fault, you have got me bang to rights but when you are not even aware of how people see you, well, that's another story completely!!

                  To end this week, something we are all aware of!  M.S has got this horrible way of presenting us, at times, in a distorted way and you can come across totally different to the person that you really are!  For those good people that knows us, those that we spend most of our lives with, that's all well and good, they have their own coping mechanism's and respect to them for that because let's be honest, they all deserve a medal for putting up with us!          However, the people who don't know you so well, you can see it in their faces, the looks that they give, you can't blame them, they don't know what is wrong with you, if your leg's not hanging off, you look alright to them!  It does make me want to hand out a card to them saying, 'sorry for the way I am today, I'm just having a bit of a cow, tomorrow I will be ok, maybe, hopefully, whatever, so if you could just bare with me for a bit, I'm normally a really nice bloke and you will like me, I'm sure!! xx