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