An introduction and why MS has been good for me

Everyday living
1

I’ve been browsing the forum for a few months and only recently given in to the temptation to sign up and post, but a couple of my posts have prompted some of you to ask a bit more. I’m too lazy to type individual replies, so I’d like to introduce myself…

I’m a 39yr old Glaswegian called Garry (who would’ve guessed!?), living in happy exile with the Wee Wifey somewhere in the Durham Dales. I work in IS for a major NE company where I’m employed to right wrongs, herd cats and fix things that can’t be fixed. I also look after a lot of people as a union steward and tend to be the one they call on when problems arise because I can, in most cases, fix them and make life a little bit better.

If anyone from my company is reading this then they’ll know who I am. Hi :o)

I was diagnosed with RR MS in 2001 following an optic neuritis, so I’m not someone who’s new to the illness. When I was diagnosed I was running, climbing and swimming everyday. Six years ago I was down to running 6 miles a day. Right now I’m bu****ed after climbing the stairs, have 999 on speed dial and know the paramedics by name. I got a christmas card from them on their last visit and was invited to the A&E Xmas party.

However, despite all this I have something important to say…

I love my MS. Being diagnosed with MS was the best thing that ever happened to me.

A number of you will disagree with this (I can already hear tea being spluttered over keyboards and angry letters being written to the Editor), and some of you might report this post, but tough, I’m going to say it because in a world where some people seem to play Top Trumps with their symptoms I’m an MS lover and proud. Here’s why.

I never chose MS, but for whatever reason it chose me. I have no idea why, may never know, and when I asked ‘why me?’ the answer was ‘why not?’. Might seem glib, but it’s true. Why shouldn’t it be me? Sh** happens, that’s life. So after a very enjoyable 3 month bender, some truly depressing group support sessions, and a spell in rehab with a very understanding psychologist I had a choice to make; do I give in to this disease or do I live my life?

I chose to live my life and changed it for the better.

My MS gives me a unique perspective on the problems and lifes of others. It’s made me more compassionate, patient and understanding. It’s made me more grateful for the things I have in life, and thankful that I had an opportunity to do the things that I can no longer do. I might miss being able to run 20 miles or take a hike up a mountain, but I had the chance to do them and I took it. I regret nothing.

I wake up in the morning and am thankful to have a beautiful wife next to me, and I get to tell her that I love her. I get to tell my best friend that I love her, how cool is that? We laugh together every day and although we disagree over things we’ve never argued in 9 years. Where’s the point in arguing? We’ve got much better things to do with our time together!

I have an excellent, challenging job that makes me think and allows me to make a real difference, and got it because I wanted to prove that having a disability doesn’t, and shouldn’t, prevent anyone from doing what they want to. My company has been exceptionally supportive and accomodates as many reasonable adjustments as possible, and I’ve taken those opportunities and chances. I get to help people daily and that’s really, really rewarding.

I’m also thankful that I have a very close group of friends and colleagues who support me, encourage me and understand me. They don’t mother me, they don’t exclude me, and they’re not afraid to tell me the truth, even when I don’t want to hear it.

I put time and effort into my relationships, be it with my wife, my friends and family, my work colleagues. Because they’re worth it and I’m worth it. Some of the conversations are difficult and uncomfortable, but the end result makes life so much easier and simpler because they understand how I’m feeling, and I understand how they feel. MS isn’t all about me, but me and everyone else.

My MS gives me strength and hope. I might curse it at times and it might frustrate me, and sometimes it might scare me, but I’ve never given in to it. The only way to find out what the limits of my abilities are is to push myself until I can no longer go on. And then, when I’m sitting on the couch, I see it as an opportunity to read a good book, catch up on my Sky+ list or learn something new.

I’m ridiculously stubborn and competitive, but I’ll ask for help when I need it because I can’t do it all myself. I’m not so proud that I won’t ask a stranger to open a bottle of water for me. Losing face has never killed anyone, dehydration has.

I’ve been through the full range of emotions, I’ve hit rock bottom and started to dig, but I’ve come back. I’ve done some wonderful things since being diagnosed and I’ve got more planned. By the end of this year I will be running again, even if I have to use a stick as a third leg! For no other reason than I simply believe that I can. I will.

I realised very quickly that, for me, the only way of dealing with my MS was to embrace it, invite it into my life and work with it. I choose how it makes me feel, I control how it affects me, and I take responsibility for it. I choose to be positive whenver I can, and only I can take responsibility for how I feel. My body, my rules, my choices.

Some of you may now be apopletic with anger and righteous indignation, but MS is a uniquely individual condition and this is how I handle my MS. I’m not telling you how you should feel, that this is the best way of coping, or that my way is better than yours. There is no right or wrong way to live with MS because we all have our own methods and strategies to get through each day.

So that’s most of me and it’s nice to meet you all :o)

2

Well Garry, yeh…what can I say?

I have spoken to you before, not long ago, so we are alreay aquainted.

Your post will probably annoy some readers…others will praise you for your positivity and doggedness.

The thing I want to mention is about not giving in to MS/whatever condition you are saddled with!

You have been down as low as low can get and fought your way back up again…but love, not everyone can find that strength. I am one who tries to offer positive advice and do my utmost to shore people up, when they are down in the depths of despair.

Oh another point, we havent all got the luxury of a loving partner to pour our troubles out to. I have a hubby who will build me a deck, cook me a wonderful meal, but try to talk emotions to him and i hit a brick wall!

Anyroad, I am glad you love your MS…I dont think there`ll be many folk who share in that bit of thinking.

Maybe it has sorted your once troubled life out and that is great, but a lot more folk it has caused them a troubled life, which they are stuck with.

Good to talk, innit?

luv Pollx

3

Nice to meet you too, Garry.

You have a very interesting take on things, and I share a good deal of your approach, or try to. I do draw the line at embracing my MS (!) but I completely agree with the need to engage with it in order to make the best of things. For me, it feels more like a not-very-friendly negotiation with an opponent who holds all the cards, but that’s life: sometimes practically any deal is better than none, and I certainly do not have the energy to stay in a permanent state of daggers drawn with MS. Your more philosophical attitude gives me something to aspire to, though.

Alison

4

Hiya Garry, how’s it gaun the day, the only part of your post I canny agree with is the, embrace MS, you just have to accept it and get on wi life as best you can, push yourself as much as possible within reason, and not lie down and die, like some, Brian

5

No death threats yet so all is good ;o)

From the moment I was diagnosed there was an unwritten and unspoken expectation from others, including those working in the MS field, that I would give up, roll over and spend my days in an endless fog of self pity and remorse over all the things I could no longer do and how bad I was feeling. And that wasn’t because of who I was - life before MS was actually much more hedonistic - it was a general expectation for anyone with this diagnosis. So I decided that maybe, just maybe, I’d be different.

I have a good life, and it takes a lot of hard work, effort and strength to maintain it and remain this bloody cheery, but it’s worth it. I’m under no illusions as to what the future could hold for me, and that’s one of the reasons I choose to be positive. The future’s a big place and my choice is to wring every last moment of happiness and enjoyment from it that I can, while I can. Not always possible, but I try.

But what frustrates me is that I’ve had MS nurses and doctors tell me that in terms of attitude and approach, those of us with a generally positive mentality tend to be the exceptions to the rule. I would never expect anyone with MS to be jumping for joy all the time (I would but I’d end up on the floor), but my experience around others with MS - some better and some worse than me - actually reinforces what the doctors tell me. That’s really sad but another post for another day.

Alison/Brian - fair point on embracing MS and I was wrong. I used ‘embrace’ in terms of inclusion rather than something I want to throw my arms around and cuddle, so not the infamous ‘MS hug’ that we all know and love. So inclusion would be a better word to use - I decided long ago that because MS would be such a large part of my life that it would be easier to include it in my plans rather than spend time and energy fighting it. Too many eccie’s today…

6

Hello Garry

Enjoyed reading your post and agree with most of what you’ve said. I can’t honestly say its the best thing thats ever happened to me though. I have two beautiful grown up children

I too am a very positive person. Your writing is very inspiring x

7

garry

what a brill post! i totallly get were u r coming from. i particularly like the ‘but dehydration will’

if u have been ‘lurking’ then u prob are aware i am fairly well (?!) disabled because of ms now (physically very and mentally variable) but it is my attitude/outlook that def keeps me going

ellie (ps used to go to ms gatherings in glasgow-brill folk. am not able to now but am still in touch with several of those brill folk)

welome to the site…

8

Garry hello,

I rarely post here although I look at the forum regulary.

As you quite rightly say MS is very much an individual condition and I am glad you’re able to manage your situation in such a positive way.

I don’t have MS, my wife does. She was diagnosed just a little bit earlier than yourself. At that point we were married a year and life was pretty good. She liked to play tennis and we got in quite a few trips to Wimbledon. She loved holidays, had a wide group of friends and along with myself had a good job in the same Bank. We had both worked since leaving school.

Initially after diagnosis life didn’t change much and we didn’t worry too much about this MS thing. But a couple of years in things began to worsen. Thinking back we did remain positive and looked at everything from Pilate classes, physio, Homeopathy, LDN and even considered a trip to China for stem cell therapy. My wife took part in trials looking at cannaboids. In between we tried to go on working etc and living life as normally as we could.

Today as I type this I’m waiting for the flat buzzer to go so that 2 carers can come in and get my wife hoisted out of bed. It’s a profiling bed and I can hear the constant hum of her air mattress. My wife no longer works having been medically retired some years ago. I no longer work having left a good job in the police 18 months ago to become a full time carer.

We have carers 4 times per day. My wife spends most of her time in a chair or in bed. She now has no mobility and can’t do much for herself. As I look through to the bedroom I can see a bag of pee over the side of the bed from her catheter. This morning carers had to clean her in bed as she poo’d into a pad unable to hold off until hoisted onto a commode.

She has significant cognitive difficulties and can longer concentrate to read, use a PC or other things she used to enjoy. She watches TV all day and would not say a word if I didn’t speak to her. She couldn’t type this, she cant fill out any forms for her benefits etc (in fact she can’t remember what benefits she gets). I am now at the stage of putting Power of Attorney in place.

Unfortunately there’s no chance she’ll be running by the end of the year… she’s sometimes not sure what year it is!!

What I’m trying to say (probably quite badly) is that we could have been the most positive people in the world…but the course of the MS we have experienced was always going to smack us in the teeth.

So this is not to rain on your parade. I am genuinley happy that you are able to deal with your MS as you do and long may it continue. From my side MS has stolen so much and has not enriched us in anyway. I can only curse the day MS entered our lives.

Sorry for the rant.

Corlic

9

oops-just reread-u r not in glasgow any more…sorry…my bad

10

Garry, good for you. I would be interested to read how you feel in 20 years time, I suspect your joy will have worn off a bit by then. Are you sure it’s M.S. that’s the best thing that’s happened to you? As a frequent visitor to Glasgow ( to visit daughter who lives there) I’m wondering if your elation is more due to moving south of the border. Glasgow seems to be lacking in Scots and is more Eastern Europe in it’s culture. At least the spoken word in the Durham Dales will be easier for you to understand.

11

Hello,

Wow, its so nice to hear someone that finds their ms to be a possitive thing.

For me my ms has cost me my career, social life and freedom (…and left me broke and broken). The lack of ms care just leaves me feeling like im stuck in a prison for a crime i did not commit. With no chance of parole.

I could never see my ms as a possitive thing, but its great that you do. I can see why some would be upset by this, but its your ms! Nobody else but you has your ms.

Best of luck,

Darren

12

corlic

i also get what u r saying. i have no partner but still have 3 kids at home (11-18) and have no idea how bad this will get (its changed dramatically in 18 months) but i do know that worrying what might be isnt going to help me currently.

i have no more words just to say u and ur wife are in my thoughts…

ellie

13

Hello Corlic

Felt very sad, reading your story. My heart goes out to you and your wife…I hope you are getting plenty of support Corlic?

All the best to you x

14

Corlic

Thank you for sharing your experiences and no, you didn’t rain on my parade.

MS can be exceptionally cruel and indiscriminate in who it chooses and the damage it does, and I live my life knowing that one day it could be my wife who has to let the carers in for me. I have no illusions.

For me, the simple fact that you’ve supported your wife in the way that you have is testament to your love for her. And though you may not realise it given the situation you and your wife are in, I find that much more inspirational.

Take care

Garry

15

Hi Corlic

I am in a similar position to your wife, i spend 24/7 in bed.these days,i have had ms 22 years now,and i was positive in the first 15 years,then mine too progressed,each year i have been able to do less and less,

if positive thinking was enough to stop the ms progressing,then i know i wouldnt be like i am today,i am made to feel because my ms HAS progressed that somehow its my fault,

it is so not the case,i am/was one of the most positive people ever,and i vowed my ms wouldnt get bad, lol,how naive was i, i thought if i remained positive that i was safe somehow,i think people should realise more that,how your ms progresses is more down to sheer luck,it also depends on where the lesions are,

some people can have lots in places that hardly affect them,others can have just one or two,lesions in a place that can have a devastating impact,it used to upset me that i was made to feel it was my fault,but after all this time,it goes over my head

I am pleased that Garry remains positive,and really hope his ms allows him to do so for many a year.

16

Years ago, I looked after a lady at one of the Kenmore Cheshire care homes. She had MS and was paralysed from the neck down. She was a very positive lady. Painted some beautiful paintings and designed greeting cards by holding the brush in her mouth.

I am not in anyway making comparisons. All I am saying is, that its a unique illness and will be experienced differently for all of us, no matter how disabled we may become.

17

I agree we might as well be positive as its not going to change how disabled we will become and that we are ruining what we have now by being negitive BUT putting this into practice is very hard as im sure many would agree. As a recently diagnosed person (oct 2012) I find it hard reading about the devastating effects ms can have but I can’t stop myself and I have to try and balance this out with the number of ms sufferers who although effected can still function yrs later and are happy with there lives. We also live in an era when people seem to be given dmds early and if this fails there are 2nd line treatments to try. New trials and drugs will be available in the next 5 yrs which could also infkuence how our disease progresses and there is so much research going on a break though in treatments im sure will help us. In the meantime lets try and be as happy and positive ( as we can be) as none of us knows what will happen tomorrow let alone in the future. Xx

Think this is more of a mental telling off to myself as I was feeling down today

Zoe

18

Hello again folks,

Thanks for your kind words and thoughts.

I re-read my earlier post and even I thought it sounded depressing!

At the end of the day we are where we are. It may not be how we would have wished life to go but most days we get along fine.

Homecare came into play last year and despite initial reservations has worked very well. I’m now used to the routine, the carers are very good and my wife prefers it to the previous routine of me pulling her up from chairs etc with the limited mobility she had. Trust me my back is grateful!

We have the support of an excellant Occupational Therapist who spent a lot of time with us last year and was great at organising new equipment. We arranged my wifes first respite break at the end of last year to Leuchie House in North Berwick which was a success. We have another break lined up for the end of February and possibly again in June. The thought of this makes a massive difference.

My wife is generally well bar the odd UTI. She is very placid and quite accepting of where she is. In some ways her MS seems to have wrapped her in a bit of a bubble inside which she’s quite happy. In some ways this is no bad thing. Don’t get me wrong she is still with it in terms of knowing what’s going but cognition in terms of memory, expression, communication, concentration and emotions are impaired. I could flake out on the floor right now and I don’t think I would get much if any reaction!

I’m wandering…what I’m trying to say is things are probably better than they sound, it’s just what you get used to.

My wife is quite happily sat in her chair having just watched Eastenders. If the carer gods are with me tonight they will arrive shortly and put her to bed before she attempts to watch a recording of Call the Midwife…honestly I would rather rub sand in my eyes or drink a pint of wasps.

Take care all.

19

garry

i enjoyed your post. it’s good to hear of the positives.

i am a more thoughtful person now.

since i got medically retired i have time to think of other people.

if it is a bright sunny day i call for an elderly lady i know and take her for a drive over the west pennine moors.

i know it makes her feel good but it makes me feel good too.

so cheers! thanks again

carole x

20

Glad to see a positive approach to ms will take a lot on board. Jones bear.