An Unwelcome Visitor: Chapter 6..........It's all out there, seek and ye shall find!
After I had been back back at work for the best part of a year and a half, I had settled into a good position at work, I had been attached to Company security all this time, people assumed I was now a permanent fixture within that team but things were about to change for me! During this time I had made regular visits to my local hospital and had countless hours of physio to 'correct' my battered posture, of which I was completely to blame! Due to me leaning to the left and heavily on my stick, due to me sitting in such a way/position in the armchair or in the car, as long as my head was in an upright position and I did not feel nauseous, I was happy but my spine, neck and pelvis had other ideas! My whole 'frame' was totally out of sync with my brain and I was severely 'lop-sided', so a plan of attack was definitely needed to sort things out. I had to do a lot of pelvic exercises, lying, sitting and standing, then I had to do all manner of balance techniques, standing on one leg, eyes closed then turn to the left, then the right and promptly fall over and start again!! One exercise that I particularly hated meant lying on my back, then roll to the left, back to the centre, then roll to the right, back to the centre then sit up! This would make me feel so dizzy and would always end up in making me feel as sick as a dog and although I tried my best, I just could not do them, so other forms of exercises were worked out for me! One I did had me and the physio's in hysterics and this particular one was more like a dance! It meant I had to move sideways using the balance bars as support and cross my left leg over my right until I had come to the end of the bars, then using the opposite leg to start, move back to the beginning again! This was a very similar move to that of Hank Marvin & The Shadows or more latterly the group MUD and what made it even funnier was that my Physio at the time, a lovely girl, had never heard of either of them, WHAT!!! I just ended up saying that she was young and you had to be there, ask your mum and dad!
One day I was asked if I had ever had acupuncture before, which I hadn't and so it was decided to give it a try and see if it would help with the pain in my neck and shoulders! I had to answer all of these questions first, have a little talk about the 'possible' benefits, see if I was happy about it first, I had no problem and was just glad to try anything if it could help me to get back to any form of 'normality'. My first session came and I arrived at one of the physio areas, the physio introduced herself as Fran, all of the physio's I have ever had have all been lovely people and she was no exception. These are the pins that we shall use she told me, we shall put them here and here and here and here and here, oh and there and there! Christ how many are you going to use, I remember saying and it's in my neck not my whole body!! At that time I was unaware that certain parts of the body are connected to parts that seem to be miles away! Ok, do your worst I said to her and battle commenced! You may feel a little scratch she said, no love, you mean prick I replied, we both had a snigger and the ice was broken, the pins were all put in, I was left, on my side to read my book and was told to relax and she would return in a while! Upon her return, the pins were removed, I was given a brief pep talk on possible after effects and an appointment was made for the following week. As per bloody usual, I was hoping for that elusive 'quick fix' and as always, it was not to be! I met her the following week and she asked me how i felt and I said no different, so we tried one more session to see if I would start to notice any change. Anyway, it was not to be, so it was back to the drawing board, I thanked Fran for persevering with me, actually I said she was probably a man-hater who just loved to stab men with needles and was probably into voodoo, fortunately she laughed, or was it the cackle of a She-Devil?
More physio ensued and eventually it started to work for me, a lot of work from us both, a lot of frustration on my part, all of this was so incredibly tiring but I was determined to regain at least some of what I had lost! God bless them, they were so patient with me but they made me work, the phrases, keep going and just a bit further, you can do it, all gave me the motivation to reach the 'G' word! The 'G' word of course being 'goal' or 'goals', now as I have said on many occasions, I hate that word, I mean 'fucking' hate that word, it won't ever give me back what I want, so I can't acknowledge it, just a personal thing you understand!
It was about this time, about seven years ago that I started to take Amantadine to help me deal with my fatigue levels! This helped me a great deal because fatigue had become such a problem to me, the thing I liked about this drug was that even I could see it working and it certainly helped me to deal with fatigue. I carried on taking it right up until last year, more of that to come later in future blogs.
I was incredibly lucky I suppose, I managed to be able to keep my MS symptoms under control, being well aware of my limitations and working with it so to speak. This I was able to do right up until April of 2008 and then I suffered my first bad relapse. I suppose, in hindsight, I had been aware of certain 'warning signs' for some months beforehand! Work was now going well and I now was working within the main Stores of the Company that I am with, this in itself was an achievement for me, as this was a position that I had applied for, sat an interview and managed to get the job on my own merit, not just be given the job to give me something to do, this made me feel really good about myself and my confidence was doing really well. All of a sudden, I seemed to be getting hit with fatigue more and more often, my left leg started to ache a lot and my left foot seemed to be permanently cold to the touch. Then I stumbled in the garden and really bashed my right foot on low level brick wall, this was entirely my own fault, I just reached across to pick up a spade and lost my footing, tried to correct myself but fell against the wall! Then one morning when my alarm went off, I just did not get out of bed straight away, I just laid there thinking to myself, Christ I feel like shit!! I finally managed to get out of bed, lost my balance almost immediately and just fell back onto the bed, I remember thinking at the time, what the hell is going on, why do I feel so bad! My wife rang in work and said I was not coming in for a couple of days and that we would be seeing my Doctor. When I saw him, he had no hesitation in signing me off work for a couple of weeks, I was lucky, he had been my Doctor right from the early days of my diagnosis in 2000 and I am pretty sure that he thought that I was having a relapse! Anyway two weeks became a month, which became six weeks and eventually I was laid up for almost a year. Things were slightly different this time around, I was not so scared, certainly not as I was all those years ago, I kind of new what to do, how to do it and when to do it, life was still really hard for us but unlike the first time, I was able to do most things myself. So more physio, a session of steroid infusions, more waiting, hoping and praying, I was allowed to increase the dose of Amantadine and this started to help with my fatigue. We did lots of walking, short journeys to start, then we would go further if I felt up to it, little and often and unlike before, we made sure that my body and my mind were kept as active as possible!
During this time, one of my oldest and dearest friends, Rik, would come and take me to the local Cine-World, always on 'cheap Tuesday' naturally! We would sit through some great movies, some ok ones and also some of the shittiest films you could imagine! We would just take it in turns in picking a film, go to the cinema, load up with sweets and choose any seat we liked most times because we went in the afternoons, there was never a problem in getting one! If the film was a good one, we would come out buzzing, just like a pair of kids but if the film was a stinker, quite often the pair of us old farts would nod off, and on a couple of occasions we would be woken up by staff! They would never give us a refund for a bad film either, can't think why, bastards! I really started to look forward to our weekly visits to the movies, it was great for me to get out and take my mind off of things for a couple of hours.
As I said earlier, this second relapse took me out of the game for almost another year and when I was able to return to work, I did no what to expect and I was able to have a totally different mindset to the on I had the first time around. Everything was done gradually and as before, I was strictly monitored, I have nothing but total gratitude to my Company, they were supportive to me and my family whilst I was off sick and they were so good to me upon my return. It was about the time of my return that the 'suggestion' was made to me about counselling but at that time in my life, I was incredibly cynical and thought that I knew best! You see, I still had a massive problem to overcome, I was still unable to accept my diagnosis and so because of this, I was a very angry and bitter person! This was not necessarily apparent on the 'outside' but most definitely on the 'inside'. Basically, I had to start accepting my lot, let go of the old and move on with the new and at that time, I suppose I was still very much in denial!
The next chapter will discuss how I finally decided that I would go and have councelling, it's profound affect on me and how it enabled me to look deeper into the world of MS that for too long I had avoided!
Sunday 26 January 2014
Saturday 18 January 2014
An Unwelcome Visitor. Chapter 5.
I'm still the same person, of course I am......... I think?
During that first year back to work, so much had changed about my whole life! Obviously physically but just as importantly, mentally! All of you MS'rs out there will know exactly where I am coming from, the physical changes are pretty obvious, your walking capabilities, your dexterity, changes to your speech, you name it and there are changes! Don't get me wrong, I am well aware that sadly some people are far, far worse off than others and compared to some, what have I got to moan about! It took me a long, long time to regain a lot of what I had before and I am very lucky that most of it has returned, buggered off a few times along the way but essentially, most has come back, somewhat different each time but nonetheless it has comeback. Apart from a wheelchair, I have used most forms of walking aids and am now left with just a walking stick, by the way, did I say that I hate that fucking stick! I keep it with me at all times, usually in the boot of my car, I know that it is more than useful to me if and when I need it but I still, even after all these years, only tolerate it and will only use it if I really, really need to! I know that people have always said to me, if you need it, use it and I have, I do and I will but please don't ever ask me to like it!
I was 'ok' at sports in my day, I played a lot of six-a-side football, I loved cycling for fun but I was never a 'prolific' runner or jogger, although I entered two marathons in my twenties and am proud to say that I finished both, even stopping for a cigarette or two on the way! Unfortunately running or even just jogging nowadays just makes me feel so nauseous, this is due to my head moving from side to side, a perfectly normal motion for this activity but as I am now, a definite no no! The strange thing is, if I am ever asked, I always say, Christ I wish I could run again but then again as my wife is quick to point out, I never used to run a lot in the first place (cheeky bitch!) but when that choice is taken away, it's almost like the running 'career' that you never really had anyway, has come to an abrupt end!
The other thing that M.S has done to me has not got anything to do with the physical side of things, I have over the years 'adapted' accordingly, if I were to be perfectly honest with myself, it is the damage that has been done to me mentally that I am only just coming to terms with and addressing! There are lots of people who have been diagnosed with M.S who, once they are able, once the initial symptoms have been bought under control and they have regained and restarted their lives, seem to want or even have to go balls out to prove they are still able to do what they could before! Much respect to these people, if you can still do it, great, but just remember, nobody is judging you, nobody expects you to turn into an Olympian, just be who you really are! For far too long I wanted and felt like I needed to be seen by others as the same as I always was, I felt like I was a 'lesser' person if I didn't, having this mindset kept me going, or so I thought! I just had to accept the fact that I could not do the same things as I did before!
Due completely to me trying to deal with M.S on my own, in my own way, not seeking advice or help from anyone else, having this attitude fucked me up mentally for far too long! Not that it sent me round the bend totally ( some would say I was a bit of a nut job anyway) but it made me, at times, a not very nice person but at the time I didn't care, if people saw this shitty person, then I must have been a shitty person! However, as I have now learnt, M.S is a huge beast, it is enormous, take it on and it can and in my case did, smack you silly, so don't even think you can win, you can't! Work with it, don't embrace it, never give up the real you, the person you are inside, hang on to that person with all you have got!
During my recovery process, one of the many things that took one hell of a beating, was my self-esteem! You feel that everything has been taken from you and what comes back, makes you seem to be a 'shadow' of your former self. This is very true, it makes you feel sad for a start, pissed off for sure, worthless, humorless, you name it, every form of human emotion going, you go through the lot! However, you start to use different emotions, ones you would never have dreamed of before! In my case, I became very cynical about everything, I became very judgmental about others, in some cases I became very rude, even obnoxious! All of these emotions, none of which I was doing consciously and when I became this person, I had to have it pointed out to me in order to rectify them! During this 'metamorphosis', I developed a 'wicked' sense of humour, this at times, others found strange, I always liked a good laugh but now my humour had become at times, at the very least 'dry' and to the other extreme, very 'acerbic'! Having M.S altered my character so much, I began to question myself, Martin, you are a nice bloke not a shit, I would think to myself, start liking yourself again, other people like you, so stop feeling sorry for yourself!
Before diagnosis I was a very mild mannered guy, any trouble and I would avoid it or at the very least try and calm any 'awkward' situation down! However, what M.S did to me was to alter my whole way of reacting to it, instead of walking away from a confrontation or avoiding an argument, I would stand my ground and put my case forward, I just would not lower my guard! Initially this even shocked me, I did not care, who,what ,why or when, I didn't care how big or even how many people were 'bearing' down on me, I just stood my ground! Perhaps it was the the 'psycho stare' that I had that did it, I don't know, take my word for it, I am fundamentally a really nice guy, a top bloke but I was just a little bit of an angry man back then, well, very angry actually!
As I said earlier, your self-esteem gets knocked out of you most definitely! I've been happily married for nearly thirty years and like most men, we all think we are drop dead gorgeous (yeah right!) but for ages, I had a huge problem talking to women apart from my wife! I would not make eye contact with another woman, not in a romantic way, in any way! It could be in the Newsagents or Post Office anywhere and if they spoke to me, I couldn't handle it! Don't look at me, don't talk to me, I am a leper,(and a leper with M.S too) isn't it obvious for Christ sake!! As you can tell, the effect M.S had on me was all consuming and took a long time to get over but eventually and very gradually, these feelings just left, one by one and I began to function normally again. I would start to interact with people, I would engage in conversations, I began to socialize more, it must be said, it was on my terms and I was still incredibly self conscious about myself and I still would not let myself go fully, something was still holding me back, not allowing me to completely relax and start to enjoy myself as I did before and it took me years to realize that the one thing that was holding me back, was ME! ! This would take me years to realize fully and I am still very much a work in progress and to become the nice person that was always in there, has been achieved with a lot of help from some good people to whom I owe so much, these people have helped me to stop this angry person take over my whole life!
Chapter.6 I will talk about the help I have received, the different forms that this has taken and discovering true friendship and how I am gradually coming to terms and finally accepting M.S
I'm still the same person, of course I am......... I think?
During that first year back to work, so much had changed about my whole life! Obviously physically but just as importantly, mentally! All of you MS'rs out there will know exactly where I am coming from, the physical changes are pretty obvious, your walking capabilities, your dexterity, changes to your speech, you name it and there are changes! Don't get me wrong, I am well aware that sadly some people are far, far worse off than others and compared to some, what have I got to moan about! It took me a long, long time to regain a lot of what I had before and I am very lucky that most of it has returned, buggered off a few times along the way but essentially, most has come back, somewhat different each time but nonetheless it has comeback. Apart from a wheelchair, I have used most forms of walking aids and am now left with just a walking stick, by the way, did I say that I hate that fucking stick! I keep it with me at all times, usually in the boot of my car, I know that it is more than useful to me if and when I need it but I still, even after all these years, only tolerate it and will only use it if I really, really need to! I know that people have always said to me, if you need it, use it and I have, I do and I will but please don't ever ask me to like it!
I was 'ok' at sports in my day, I played a lot of six-a-side football, I loved cycling for fun but I was never a 'prolific' runner or jogger, although I entered two marathons in my twenties and am proud to say that I finished both, even stopping for a cigarette or two on the way! Unfortunately running or even just jogging nowadays just makes me feel so nauseous, this is due to my head moving from side to side, a perfectly normal motion for this activity but as I am now, a definite no no! The strange thing is, if I am ever asked, I always say, Christ I wish I could run again but then again as my wife is quick to point out, I never used to run a lot in the first place (cheeky bitch!) but when that choice is taken away, it's almost like the running 'career' that you never really had anyway, has come to an abrupt end!
The other thing that M.S has done to me has not got anything to do with the physical side of things, I have over the years 'adapted' accordingly, if I were to be perfectly honest with myself, it is the damage that has been done to me mentally that I am only just coming to terms with and addressing! There are lots of people who have been diagnosed with M.S who, once they are able, once the initial symptoms have been bought under control and they have regained and restarted their lives, seem to want or even have to go balls out to prove they are still able to do what they could before! Much respect to these people, if you can still do it, great, but just remember, nobody is judging you, nobody expects you to turn into an Olympian, just be who you really are! For far too long I wanted and felt like I needed to be seen by others as the same as I always was, I felt like I was a 'lesser' person if I didn't, having this mindset kept me going, or so I thought! I just had to accept the fact that I could not do the same things as I did before!
Due completely to me trying to deal with M.S on my own, in my own way, not seeking advice or help from anyone else, having this attitude fucked me up mentally for far too long! Not that it sent me round the bend totally ( some would say I was a bit of a nut job anyway) but it made me, at times, a not very nice person but at the time I didn't care, if people saw this shitty person, then I must have been a shitty person! However, as I have now learnt, M.S is a huge beast, it is enormous, take it on and it can and in my case did, smack you silly, so don't even think you can win, you can't! Work with it, don't embrace it, never give up the real you, the person you are inside, hang on to that person with all you have got!
During my recovery process, one of the many things that took one hell of a beating, was my self-esteem! You feel that everything has been taken from you and what comes back, makes you seem to be a 'shadow' of your former self. This is very true, it makes you feel sad for a start, pissed off for sure, worthless, humorless, you name it, every form of human emotion going, you go through the lot! However, you start to use different emotions, ones you would never have dreamed of before! In my case, I became very cynical about everything, I became very judgmental about others, in some cases I became very rude, even obnoxious! All of these emotions, none of which I was doing consciously and when I became this person, I had to have it pointed out to me in order to rectify them! During this 'metamorphosis', I developed a 'wicked' sense of humour, this at times, others found strange, I always liked a good laugh but now my humour had become at times, at the very least 'dry' and to the other extreme, very 'acerbic'! Having M.S altered my character so much, I began to question myself, Martin, you are a nice bloke not a shit, I would think to myself, start liking yourself again, other people like you, so stop feeling sorry for yourself!
Before diagnosis I was a very mild mannered guy, any trouble and I would avoid it or at the very least try and calm any 'awkward' situation down! However, what M.S did to me was to alter my whole way of reacting to it, instead of walking away from a confrontation or avoiding an argument, I would stand my ground and put my case forward, I just would not lower my guard! Initially this even shocked me, I did not care, who,what ,why or when, I didn't care how big or even how many people were 'bearing' down on me, I just stood my ground! Perhaps it was the the 'psycho stare' that I had that did it, I don't know, take my word for it, I am fundamentally a really nice guy, a top bloke but I was just a little bit of an angry man back then, well, very angry actually!
As I said earlier, your self-esteem gets knocked out of you most definitely! I've been happily married for nearly thirty years and like most men, we all think we are drop dead gorgeous (yeah right!) but for ages, I had a huge problem talking to women apart from my wife! I would not make eye contact with another woman, not in a romantic way, in any way! It could be in the Newsagents or Post Office anywhere and if they spoke to me, I couldn't handle it! Don't look at me, don't talk to me, I am a leper,(and a leper with M.S too) isn't it obvious for Christ sake!! As you can tell, the effect M.S had on me was all consuming and took a long time to get over but eventually and very gradually, these feelings just left, one by one and I began to function normally again. I would start to interact with people, I would engage in conversations, I began to socialize more, it must be said, it was on my terms and I was still incredibly self conscious about myself and I still would not let myself go fully, something was still holding me back, not allowing me to completely relax and start to enjoy myself as I did before and it took me years to realize that the one thing that was holding me back, was ME! ! This would take me years to realize fully and I am still very much a work in progress and to become the nice person that was always in there, has been achieved with a lot of help from some good people to whom I owe so much, these people have helped me to stop this angry person take over my whole life!
Chapter.6 I will talk about the help I have received, the different forms that this has taken and discovering true friendship and how I am gradually coming to terms and finally accepting M.S
Saturday 11 January 2014
An Unwelcome Visitor..Chapter.4
"Please God, let me back into the real world........"
After almost a whole year off, I was eventually able to return to work, albeit, a very gradual return! Getting to that position took a lot of six weekly visits to my GP, lots of physio, couple of visits from the HR department at work along with my Trade Union Rep's, both had my best interests at heart and I genuinely thank both for their concerns for my welfare! After one of these visits, agreement was made with them along with strict instructions from my own Doctor, that I could return to work starting off with one hour per day for two weeks, then two hours after that and see how I progressed from there! This was to be done and there were to be guidelines put in place that I would be strictly monitored throughout and that I was to do exactly as I was told! Having now been given the green light to return to work, this was one of the best things I had heard in a long time, however I cannot deny that it was tinged with a great deal of apprehension on my part! You have to remember, a year before, I was just a normal guy with no health problems, no work problems, no marital or family problems, all was ticking along nicely in my world thank you very much! Then this 'unwelcome visitor', aka M.S arrived out of the blue and turned my cozy world on it's head, well, trashed it completely and just for good measure, decided to stay! The point I am making is, although I was SO pleased on one hand, on the other, I was scared shitless, I had been out of the game for nearly a year, how would I deal with this, how would it affect me, what was I still able to do and more importantly to me, how would I be seen by others!
My first day back to work was almost like my first day at school, I was picked up by a lady from the H.R Department, along the way she gave me all of these instructions which basically meant that I was to be a very good boy, or else! She meant well but she was young enough to be my daughter and I remember thinking, " cheeky bitch! Of course I knew she and the Company were only thinking of me and as I said in the beginning, I am and always will be truly grateful to them. I was put to work with the Company security, I was by this time getting around with a walking stick and they were told all about me before I arrived so there was no awkwardness at all, far from it, they were some of the nicest people I had ever met and made me welcome from the start, which was very ironic because a year before, I like everybody else in the Company, thought that they were the most obnoxious gits you would ever meet! That 'hour a day' just flew by, it seemed that I had only just hung my coat up when it was time to go and they all made sure that I left when I was supposed to! My wife picked me up, dropped me at home and settled me in then went back to work, we had already worked out our plan of picking up and dropping off and agreed that this would be suitable for us and the kids school was just around the corner, so that was not a problem. I was absolutely buzzing by this time, just for being back at work for that hour, getting out, being involved, mixing with other people but I was so unprepared about that one hour being so tiring! I was exhausted, I mean really knackered! I didn't need to get changed, let's face it I was not at work long enough to get dirty, so I slumped in the armchair and promptly fell asleep and stayed there until the doorbell rang and the kids were home. This 'regime' went on for a couple of weeks and by this time my body had got used to the hour I was doing, then we increased it to two hours. Slowly but surely things were starting to work for me and this was being helped by me learning to pace myself and not going charging back into things. It was not easy, not by any means but I did as I was told, rested when necessary and apart from the improvements to my body, my state of mind was getting better by the day! My speech was still not doing too well and I was often asked to repeat myself, this I found an awkward thing to do at first, a walk before you run kind of thing! I had been told to 'slow' down the words and the sentences that came out of my mouth! This I did in order to make sense but for some time I always thought that by doing this, people must have thought I was taking the piss, this was as always, in 'my' mind, not the case for other people! So until this side of things had begun to improve, I avoided if possible, using the phone at work., as per bloody usual, I always avoided 'confronting' the issue!
One of the tasks I was given to do was delivering the internal mail! This was not a problem, even though I was using my stick, the walks to the various mail points was good exercise for me. Before June 2000, I had been working in the factory, wether it was welding or in the Pressing plant, I was just one of the guy's. I did my bit, got paid each month and that was it, thankyou very much. I now however, had to face up to going into areas of the factory that I used to work, meet up with people who I used to work with all of the time! So, for at least two months, I avoided going anywhere near these places and the people that I used to be just like! I did try to go into the factory on a few occasions but when I did and was met with the same smells, same noises and the same atmosphere in general, it just freaked me out, I could not do it, I just had to get out of there as quick as I could! The reason was, it was just too upsetting for me, I would think to myself, I should be there, I should be doing that, I should be still as involved as I always was but now all of those feelings and emotions were gone, never to return, or so I convinced myself!
This went on for two months, and it was agreed that I could avoid going 'inside' the factory until I was ready. Then one day, I was asked if, due to lack of manpower if I would or 'could', deliver the mail to my old part of the factory! Oh Jesus Christ!! I thought to myself, go for it now you twat, you can't put it off forever! So with much trepidation, I loaded up my bag of Post and made my way into the factory and as fast as I could using that bloody stick, I made my way up some stairs to the mailbox outside of the production office. Once I had deposited and collected the mail, I turned as quick as I could and began to climb down the stairs! At the bottom a large crowd had started to gather, they were all of my old workmates and colleagues, team-leaders and managers, probably about thirty in total and as I looked down at them, they all began to clap and cheer! This scene was almost in slow-motion, I remember looking around thinking it was for someone else but then realized it was ......for me! This was one of the most emotional incidents that I had been exposed to for such a long time, I was so wrapped up in my own emotions but on this occasion I felt a genuine sense of warmth coming from them! They all said how much of an idiot I was in avoiding them, well actually they all called me a stupid tosser, I must have been doing a good job because most of them thought I was still off, why those rotten bastards! From then on, I started to relax a lot more and with each hourly increase to my working week, my health began improving so much, there was almost a spring in my step ( if it was not for that bloody stick!!) and that meeting on the stairs was the kick up the arse I needed, from then on, things just got better and better.
Next chapter I will mention the continuing improvements, how I managed my self both physically and mentally.
"Please God, let me back into the real world........"
After almost a whole year off, I was eventually able to return to work, albeit, a very gradual return! Getting to that position took a lot of six weekly visits to my GP, lots of physio, couple of visits from the HR department at work along with my Trade Union Rep's, both had my best interests at heart and I genuinely thank both for their concerns for my welfare! After one of these visits, agreement was made with them along with strict instructions from my own Doctor, that I could return to work starting off with one hour per day for two weeks, then two hours after that and see how I progressed from there! This was to be done and there were to be guidelines put in place that I would be strictly monitored throughout and that I was to do exactly as I was told! Having now been given the green light to return to work, this was one of the best things I had heard in a long time, however I cannot deny that it was tinged with a great deal of apprehension on my part! You have to remember, a year before, I was just a normal guy with no health problems, no work problems, no marital or family problems, all was ticking along nicely in my world thank you very much! Then this 'unwelcome visitor', aka M.S arrived out of the blue and turned my cozy world on it's head, well, trashed it completely and just for good measure, decided to stay! The point I am making is, although I was SO pleased on one hand, on the other, I was scared shitless, I had been out of the game for nearly a year, how would I deal with this, how would it affect me, what was I still able to do and more importantly to me, how would I be seen by others!
My first day back to work was almost like my first day at school, I was picked up by a lady from the H.R Department, along the way she gave me all of these instructions which basically meant that I was to be a very good boy, or else! She meant well but she was young enough to be my daughter and I remember thinking, " cheeky bitch! Of course I knew she and the Company were only thinking of me and as I said in the beginning, I am and always will be truly grateful to them. I was put to work with the Company security, I was by this time getting around with a walking stick and they were told all about me before I arrived so there was no awkwardness at all, far from it, they were some of the nicest people I had ever met and made me welcome from the start, which was very ironic because a year before, I like everybody else in the Company, thought that they were the most obnoxious gits you would ever meet! That 'hour a day' just flew by, it seemed that I had only just hung my coat up when it was time to go and they all made sure that I left when I was supposed to! My wife picked me up, dropped me at home and settled me in then went back to work, we had already worked out our plan of picking up and dropping off and agreed that this would be suitable for us and the kids school was just around the corner, so that was not a problem. I was absolutely buzzing by this time, just for being back at work for that hour, getting out, being involved, mixing with other people but I was so unprepared about that one hour being so tiring! I was exhausted, I mean really knackered! I didn't need to get changed, let's face it I was not at work long enough to get dirty, so I slumped in the armchair and promptly fell asleep and stayed there until the doorbell rang and the kids were home. This 'regime' went on for a couple of weeks and by this time my body had got used to the hour I was doing, then we increased it to two hours. Slowly but surely things were starting to work for me and this was being helped by me learning to pace myself and not going charging back into things. It was not easy, not by any means but I did as I was told, rested when necessary and apart from the improvements to my body, my state of mind was getting better by the day! My speech was still not doing too well and I was often asked to repeat myself, this I found an awkward thing to do at first, a walk before you run kind of thing! I had been told to 'slow' down the words and the sentences that came out of my mouth! This I did in order to make sense but for some time I always thought that by doing this, people must have thought I was taking the piss, this was as always, in 'my' mind, not the case for other people! So until this side of things had begun to improve, I avoided if possible, using the phone at work., as per bloody usual, I always avoided 'confronting' the issue!
One of the tasks I was given to do was delivering the internal mail! This was not a problem, even though I was using my stick, the walks to the various mail points was good exercise for me. Before June 2000, I had been working in the factory, wether it was welding or in the Pressing plant, I was just one of the guy's. I did my bit, got paid each month and that was it, thankyou very much. I now however, had to face up to going into areas of the factory that I used to work, meet up with people who I used to work with all of the time! So, for at least two months, I avoided going anywhere near these places and the people that I used to be just like! I did try to go into the factory on a few occasions but when I did and was met with the same smells, same noises and the same atmosphere in general, it just freaked me out, I could not do it, I just had to get out of there as quick as I could! The reason was, it was just too upsetting for me, I would think to myself, I should be there, I should be doing that, I should be still as involved as I always was but now all of those feelings and emotions were gone, never to return, or so I convinced myself!
This went on for two months, and it was agreed that I could avoid going 'inside' the factory until I was ready. Then one day, I was asked if, due to lack of manpower if I would or 'could', deliver the mail to my old part of the factory! Oh Jesus Christ!! I thought to myself, go for it now you twat, you can't put it off forever! So with much trepidation, I loaded up my bag of Post and made my way into the factory and as fast as I could using that bloody stick, I made my way up some stairs to the mailbox outside of the production office. Once I had deposited and collected the mail, I turned as quick as I could and began to climb down the stairs! At the bottom a large crowd had started to gather, they were all of my old workmates and colleagues, team-leaders and managers, probably about thirty in total and as I looked down at them, they all began to clap and cheer! This scene was almost in slow-motion, I remember looking around thinking it was for someone else but then realized it was ......for me! This was one of the most emotional incidents that I had been exposed to for such a long time, I was so wrapped up in my own emotions but on this occasion I felt a genuine sense of warmth coming from them! They all said how much of an idiot I was in avoiding them, well actually they all called me a stupid tosser, I must have been doing a good job because most of them thought I was still off, why those rotten bastards! From then on, I started to relax a lot more and with each hourly increase to my working week, my health began improving so much, there was almost a spring in my step ( if it was not for that bloody stick!!) and that meeting on the stairs was the kick up the arse I needed, from then on, things just got better and better.
Next chapter I will mention the continuing improvements, how I managed my self both physically and mentally.
Saturday 4 January 2014
An Unwelcome Visitor. Chapter.3
From June 2000 through to April 2001, I was effectively out of action and it was not until about September of 2000 that I started to notice any significant changes! These changes helped me to believe that I was getting better, they were minor improvements to start with, most obvious to me was my balance was getting better which helped to improve my walking! This gave a hell of a boost to my confidence, my willingness to 'want' to do more and more went on in leaps and bounds. However, I still had to learn to pace myself because M.S fatigue was always waiting in the wings and seemed to take great delight in knocking me back! Briefly, imagine being strapped to a bungee cord and when you think you are doing well......TWANG!!! Back you go, you have done too much, I did not think so and whenever this happened, it was just so frustrating and it would wind me up so much which didn't help, it just made my fatigue twice as bad, which meant it would take twice as long to be able to start again!
During the many hours spent on my own, with the kids at school and my wife now able to go back to doing her normal working hours, for me, this could at times, be a lonely time! I would pace around the room, changing the route from round and round to corner to corner, doing this often was good for my walking practice but not so good for me as a person! I now know how a caged animal in the Zoo feels! Ah bless, look at that bear, he looks so cute, yes but that bear is so pissed off, given half a chance, he will rip you apart! In short, I was going mental, stir crazy and there were many times, I was not a nice person at all! This was harder for other people to accept because it was just not me! There were many times when I would walk past a mirror and just have a burning desire to lash out at the person looking back at me and that person was of course, me! It was during these low periods I just said to myself one day, "fuck it Martin, you have put it off for long enough", so I decided to go on the internet! It was just to have a nose at first, nothing in particular, just something to do, you must remember, there was no Twitter or Facebook back then. Obviously my main reason was to find out things about M.S! I read about all the usual stuff, having a good diet, regular exercise, groups to join, how I stood with employment, benefits available that sort of thing. Then I plucked up courage and looked a bit deeper into what M.S is all about, what it does to you and what it can do to you, what was available to treat the symptoms, all that sort of thing! Now without putting too fine a point on it, when I got to this part, it scared the shit out of me! I got to the part that said that it may cause possible incontinence and bowel problems, that was enough for me, the computer went off , I pretended that I had not read about it and it was a very long time before I would look up anything to do with M.S again. Of course I now know that things can be done to help if you suffer with any of these problems but back then, I knew nothing because I had stupidly decided that I would deal with M.S myself, I was completely ignorant and it took a long time for me to adopt a different mindset. This possibility affected me so much, I would not drink anything like enough, I had become completely paranoid about wetting myself that I just ignored the benefits of drinking, totally wrong. Drinking plenty of water is so good for the body, again it's all down to pacing yourself, little and often, you must keep a steady flow of fluid! To this day, I have not had a problem with my bladder or my bowels but I know it is a very real possibility.
As I now point out to anyone who asks me, help is out there and don't be such a dickhead, you are not on your own for god's sake. I was so stubborn back then, I had allowed M.S to take over every part of my being, physically and mentally, even I did not like the person I had allowed myself to become! So if I am asked today, I will tell anybody, do NOT deal with things on your own, you CANNOT, nobody is equipped with the tools to do so!
During these days spent on my own, I would have a go at most things, anything to stop me getting bored. When you have time on your hands, a day off work or some holiday's, that is great but when you have no choice in the matter, that is a different scenario you are faced with. I even tried to keep a journal but I was just writing for myself and my writing was terrible, even I could not understand what I had written most of the time! Watching TV was such an effort, I could not concentrate for long, my mind would drift, the same with music too. Friends would bring me DVD's to watch and CD's to listen to but I was unable to enjoy either, I just could not concentrate on them! Someone even tried to introduce me to Jigsaw's! Good for some I know, people absolutely love them but I just looked at them with total disdain, I never liked them even as a kid and as hard as I tried, I just would not do them. One of the new things I learnt how to do during this time turned out to be such good therapy for me. It was ironing and I even say it myself, I started to enjoy it and in time, I became quite good at it to, now how many men would say that!
With all that I have learnt about M.S over the last thirteen years, if I am ever asked, the only bit of advice I can give to anyone who is newly diagnosed, well two bit's really, do NOT if at all possible, sit and stare out of the window for too long! Your mind will go into overdrive and you will just think negative thoughts! This will not in itself affect your 'physical' progress but it will certainly go to town on your state of mind, what do they say, a healthy mind leads to a healthy body and as tough as it is at the time, you need one to help the other! The other thing to do is find out as much as you can about M.S! Ask your Doctor, M.S Nurse, or Neurologist or someone who has had M.S for a while, anything you want to know about the condition, these people are there to help you! I am in no position to offer any warnings of any kind but before you look anything up first, tread wisely when it comes to using the Internet to look up the condition. Trust me, you are in a very fragile state mentally when you are first diagnosed, you do not want to read things that cause panic, worry or any other 'negative' emotion, get advice from people you can speak to in person.
When I look back to my those early days, it just reminds me of being on a Roller coaster ride of highs and lows all the time! People would say to me, "think positive" , or "what are my main goals"! I would look at them and just say, "goals, goals, what do you mean goals, I don't want goals, I just want my fucking life back as it was!" I knew it was not anyone's fault but I also knew that nobody could give me that elusive miracle cure, that 'wonder drug', these were the 'goals' I so desperately wanted to find.
It was these moments of 'soul searching' these bouts of 'character analysis' that I realized, how much of an angry, bitter person I had become. These were emotions that remained with me for years after diagnosis and were without doubt the two main things that held me back for far too long! Being bitter and angry is so futile, it is hard enough holding things together as it is and by Christ it is SO easy to be bitter and angry!!
In the next chapter of my blog, I will talk about when I eventually went back to work.
From June 2000 through to April 2001, I was effectively out of action and it was not until about September of 2000 that I started to notice any significant changes! These changes helped me to believe that I was getting better, they were minor improvements to start with, most obvious to me was my balance was getting better which helped to improve my walking! This gave a hell of a boost to my confidence, my willingness to 'want' to do more and more went on in leaps and bounds. However, I still had to learn to pace myself because M.S fatigue was always waiting in the wings and seemed to take great delight in knocking me back! Briefly, imagine being strapped to a bungee cord and when you think you are doing well......TWANG!!! Back you go, you have done too much, I did not think so and whenever this happened, it was just so frustrating and it would wind me up so much which didn't help, it just made my fatigue twice as bad, which meant it would take twice as long to be able to start again!
During the many hours spent on my own, with the kids at school and my wife now able to go back to doing her normal working hours, for me, this could at times, be a lonely time! I would pace around the room, changing the route from round and round to corner to corner, doing this often was good for my walking practice but not so good for me as a person! I now know how a caged animal in the Zoo feels! Ah bless, look at that bear, he looks so cute, yes but that bear is so pissed off, given half a chance, he will rip you apart! In short, I was going mental, stir crazy and there were many times, I was not a nice person at all! This was harder for other people to accept because it was just not me! There were many times when I would walk past a mirror and just have a burning desire to lash out at the person looking back at me and that person was of course, me! It was during these low periods I just said to myself one day, "fuck it Martin, you have put it off for long enough", so I decided to go on the internet! It was just to have a nose at first, nothing in particular, just something to do, you must remember, there was no Twitter or Facebook back then. Obviously my main reason was to find out things about M.S! I read about all the usual stuff, having a good diet, regular exercise, groups to join, how I stood with employment, benefits available that sort of thing. Then I plucked up courage and looked a bit deeper into what M.S is all about, what it does to you and what it can do to you, what was available to treat the symptoms, all that sort of thing! Now without putting too fine a point on it, when I got to this part, it scared the shit out of me! I got to the part that said that it may cause possible incontinence and bowel problems, that was enough for me, the computer went off , I pretended that I had not read about it and it was a very long time before I would look up anything to do with M.S again. Of course I now know that things can be done to help if you suffer with any of these problems but back then, I knew nothing because I had stupidly decided that I would deal with M.S myself, I was completely ignorant and it took a long time for me to adopt a different mindset. This possibility affected me so much, I would not drink anything like enough, I had become completely paranoid about wetting myself that I just ignored the benefits of drinking, totally wrong. Drinking plenty of water is so good for the body, again it's all down to pacing yourself, little and often, you must keep a steady flow of fluid! To this day, I have not had a problem with my bladder or my bowels but I know it is a very real possibility.
As I now point out to anyone who asks me, help is out there and don't be such a dickhead, you are not on your own for god's sake. I was so stubborn back then, I had allowed M.S to take over every part of my being, physically and mentally, even I did not like the person I had allowed myself to become! So if I am asked today, I will tell anybody, do NOT deal with things on your own, you CANNOT, nobody is equipped with the tools to do so!
During these days spent on my own, I would have a go at most things, anything to stop me getting bored. When you have time on your hands, a day off work or some holiday's, that is great but when you have no choice in the matter, that is a different scenario you are faced with. I even tried to keep a journal but I was just writing for myself and my writing was terrible, even I could not understand what I had written most of the time! Watching TV was such an effort, I could not concentrate for long, my mind would drift, the same with music too. Friends would bring me DVD's to watch and CD's to listen to but I was unable to enjoy either, I just could not concentrate on them! Someone even tried to introduce me to Jigsaw's! Good for some I know, people absolutely love them but I just looked at them with total disdain, I never liked them even as a kid and as hard as I tried, I just would not do them. One of the new things I learnt how to do during this time turned out to be such good therapy for me. It was ironing and I even say it myself, I started to enjoy it and in time, I became quite good at it to, now how many men would say that!
With all that I have learnt about M.S over the last thirteen years, if I am ever asked, the only bit of advice I can give to anyone who is newly diagnosed, well two bit's really, do NOT if at all possible, sit and stare out of the window for too long! Your mind will go into overdrive and you will just think negative thoughts! This will not in itself affect your 'physical' progress but it will certainly go to town on your state of mind, what do they say, a healthy mind leads to a healthy body and as tough as it is at the time, you need one to help the other! The other thing to do is find out as much as you can about M.S! Ask your Doctor, M.S Nurse, or Neurologist or someone who has had M.S for a while, anything you want to know about the condition, these people are there to help you! I am in no position to offer any warnings of any kind but before you look anything up first, tread wisely when it comes to using the Internet to look up the condition. Trust me, you are in a very fragile state mentally when you are first diagnosed, you do not want to read things that cause panic, worry or any other 'negative' emotion, get advice from people you can speak to in person.
When I look back to my those early days, it just reminds me of being on a Roller coaster ride of highs and lows all the time! People would say to me, "think positive" , or "what are my main goals"! I would look at them and just say, "goals, goals, what do you mean goals, I don't want goals, I just want my fucking life back as it was!" I knew it was not anyone's fault but I also knew that nobody could give me that elusive miracle cure, that 'wonder drug', these were the 'goals' I so desperately wanted to find.
It was these moments of 'soul searching' these bouts of 'character analysis' that I realized, how much of an angry, bitter person I had become. These were emotions that remained with me for years after diagnosis and were without doubt the two main things that held me back for far too long! Being bitter and angry is so futile, it is hard enough holding things together as it is and by Christ it is SO easy to be bitter and angry!!
In the next chapter of my blog, I will talk about when I eventually went back to work.
Wednesday 1 January 2014
An Unwelcome Visitor :- Chapter 2
The first couple of weeks at home were a little weird at first, almost surreal, I just felt that this was not happening to me! I had endured three sessions of Steroid infusions, a drip in my arm that slowly, oh so bloody slowly, filled me full of steroids! This I sat through for what each time seemed forever and the hope was, this may kick start my system into behaving itself and start acting normally. I was pinning so much on these bloody steroids being the miracle that was going to put everything back to normal but alas, it was not to be, my recovery would take a lot longer!
I waited and waited but I just seemed to be getting worse. My walking was now really bad and I had to move about with the aid of a frame, those who have/do use one will know what I mean, awkward to say the least! My speech, although I was unaware, was now very bad, I knew what I was saying but it came out of my mouth incomprehensible, this would really annoy me, "what do you mean, you didn't understand, are you stupid", of course they weren't but I was too wrapped up in my own confusion to worry about anyone else!
This period of my life, I refer to as 'the dark times', it is only now that I have come to even 'acknowledge' them, it is so easy to 'forget' or in my case 'choose' to forget but you can only 'bottle' things up for so long before they start to 'eat' away at you!
It was during those early months, I started to attend weekly physio sessions at the local hospital, at first I thought 'what good are they going to do, nothing! Every time I laid down flat, I vomited or became extremely nauseus, either way, I knew I did not want to do any of my exercises that involved me laying down! I think that this must have frustrated the hell out of the physios, god bless them but I stood my ground, do what you want but don't make me lay flat and roll-over! It was during these sessions that I was persuaded to attend my first 'group meeting'! It was a very small group, only six of us and I was the most 'newly' diagnosed, so as you can imagine, I stared a lot and listened even more! I was angry and scared in equal measure! A woman, younger than me, looked me in the eye and told me, 'this is as good as you are going to get, just make the most of it'! I soon decided, in a matter of seconds, groups were not for me and from that day on, I chose to deal with it on my own and in my own way. That was the case until as recent as this year (2013)
During the first six months, after regular visits to have physio, although I was not really aware, improvements were starting to happen on almost a weekly basis. My walking had improved so much, I had gone from a frame, to crutches to a stick, the vomiting had stopped and I started to gain back the wait that I had lost. All of these improvements were noticed by everyone else but me! Things just seemed to be going nowhere or at least far too slowly, boredom led to me getting really low, was I depressed, I don't know but I was extremely pissed off! My self esteem had taken a good kicking, I did not want to be in any photos, I chose to stay in and not mix with many people outside of my wife and kids, I had developed this feeling that I had become some kind of freak, the sort of person that people avoided or engaged in the most minimal of interactions with! This could not be further from the truth but I was totally blinkered, I felt crap, so I must have looked crap, this was the philosophy that I had adopted and it took years to overcome these feelings! During this 'dark period', my wife stopped me from wallowing in self pity! She washed me, cleaned my teeth, helped me to the toilet, made sure that I did not get too used to 'not caring' about myself. I would be a liar if I were to say that there must have been times when she thought she had had enough, not only was there me to look after but there were three young children to take care of and go out to work too! Family members helped out enormously and I would gradually 'allow' into my world some family members who new all about me, who could see that the person they were looking after, was nothing like the person I was before! Just as important, I started to meet up with friends and colleagues from work. They would visit on a regular basis, let themselves in and stay and sit with me. We would talk about everything and anything, we laughed, I got angry, sad, every kind of emotion you could think of. They would make coffee for us, help me out of the chair, help me to the toilet, even hold the bowl for me to be sick into! It was during these times that I began to value friendship, they did not have to do it but they did and I am eternally grateful to these people. They saw me at my worst, at my lowest but they all had a part in my rehabilitation, above all, they were patient with the patient!
Chapter .3 To follow soon :-
The first couple of weeks at home were a little weird at first, almost surreal, I just felt that this was not happening to me! I had endured three sessions of Steroid infusions, a drip in my arm that slowly, oh so bloody slowly, filled me full of steroids! This I sat through for what each time seemed forever and the hope was, this may kick start my system into behaving itself and start acting normally. I was pinning so much on these bloody steroids being the miracle that was going to put everything back to normal but alas, it was not to be, my recovery would take a lot longer!
I waited and waited but I just seemed to be getting worse. My walking was now really bad and I had to move about with the aid of a frame, those who have/do use one will know what I mean, awkward to say the least! My speech, although I was unaware, was now very bad, I knew what I was saying but it came out of my mouth incomprehensible, this would really annoy me, "what do you mean, you didn't understand, are you stupid", of course they weren't but I was too wrapped up in my own confusion to worry about anyone else!
This period of my life, I refer to as 'the dark times', it is only now that I have come to even 'acknowledge' them, it is so easy to 'forget' or in my case 'choose' to forget but you can only 'bottle' things up for so long before they start to 'eat' away at you!
It was during those early months, I started to attend weekly physio sessions at the local hospital, at first I thought 'what good are they going to do, nothing! Every time I laid down flat, I vomited or became extremely nauseus, either way, I knew I did not want to do any of my exercises that involved me laying down! I think that this must have frustrated the hell out of the physios, god bless them but I stood my ground, do what you want but don't make me lay flat and roll-over! It was during these sessions that I was persuaded to attend my first 'group meeting'! It was a very small group, only six of us and I was the most 'newly' diagnosed, so as you can imagine, I stared a lot and listened even more! I was angry and scared in equal measure! A woman, younger than me, looked me in the eye and told me, 'this is as good as you are going to get, just make the most of it'! I soon decided, in a matter of seconds, groups were not for me and from that day on, I chose to deal with it on my own and in my own way. That was the case until as recent as this year (2013)
During the first six months, after regular visits to have physio, although I was not really aware, improvements were starting to happen on almost a weekly basis. My walking had improved so much, I had gone from a frame, to crutches to a stick, the vomiting had stopped and I started to gain back the wait that I had lost. All of these improvements were noticed by everyone else but me! Things just seemed to be going nowhere or at least far too slowly, boredom led to me getting really low, was I depressed, I don't know but I was extremely pissed off! My self esteem had taken a good kicking, I did not want to be in any photos, I chose to stay in and not mix with many people outside of my wife and kids, I had developed this feeling that I had become some kind of freak, the sort of person that people avoided or engaged in the most minimal of interactions with! This could not be further from the truth but I was totally blinkered, I felt crap, so I must have looked crap, this was the philosophy that I had adopted and it took years to overcome these feelings! During this 'dark period', my wife stopped me from wallowing in self pity! She washed me, cleaned my teeth, helped me to the toilet, made sure that I did not get too used to 'not caring' about myself. I would be a liar if I were to say that there must have been times when she thought she had had enough, not only was there me to look after but there were three young children to take care of and go out to work too! Family members helped out enormously and I would gradually 'allow' into my world some family members who new all about me, who could see that the person they were looking after, was nothing like the person I was before! Just as important, I started to meet up with friends and colleagues from work. They would visit on a regular basis, let themselves in and stay and sit with me. We would talk about everything and anything, we laughed, I got angry, sad, every kind of emotion you could think of. They would make coffee for us, help me out of the chair, help me to the toilet, even hold the bowl for me to be sick into! It was during these times that I began to value friendship, they did not have to do it but they did and I am eternally grateful to these people. They saw me at my worst, at my lowest but they all had a part in my rehabilitation, above all, they were patient with the patient!
Chapter .3 To follow soon :-
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