Wednesday, 5 April 2017

Turning 21


Today marks a weird anniversary; today a body in my house turns 21. An age where you are allowed to do whatever you want, legally, across the world where you have finally become an adult.

I remember turning 21 and my mum giving me a watch. It looked initially just like any other watch but on the back it was engraved to say “A Good Man should always have a Good Watch”.

I remember getting it quite clearly and my mum saying that men don’t wear much jewellery and because of that you can find a lot out about the ones that do.

A decent watch shows that a man is aware of his responsibilities and tries hard to keep to them.
I loved this and as a coming of age it was an important landmark to be presented with a one of these features that show a good quality of a man.

So this body, turning 21, should be celebrated too. Yet, it isn't. It is my body. Today is 21 years since I was diagnosed with Muscular Dystrophy. And the watch is a reminder of the time it has taken and the progression of the illness .

Just over 21 years ago I started having some walking difficulties and was falling over constantly 3 - 8 times a day. I lost a massive amount of weight and at the age of 14 weighed only 6 stone.
Initially I was diagnosed with Polymyositis (an inflammation of the muscles caused by an autoimmune failure) this was later advanced with the diagnosis of the primary cause Muscular Dystrophy; specifically Facioscapularhumeraldystrophy (FSHD) which was the true cause all along.

In all of those years not once have I let it beat me or as it happens taken the Doctors advice fully; I will walk as long as I can even if I need support and equipment. I know that they have a certain amount of predictive growth of where they believe that my health will be in 5 or 10 years but that doesn’t stop me, not one tiny bit, from doing the things I want to do. Well apart from run but who really wants to run? ;-)

Today is a weird day for me mostly because it sits at the back of my mind that I have had these difficulties most of my life. It is a day when I keep stock of what I can and cannot do in comparison to last year; an example of this is my ability to really lift anything of weight with my left arm.
However, it is still a normal day where I get on and I do what I always do. I will be with the boys; we will play, learn, shop, cook and be “normal”.
Following a lot of support from friends I have spent this last couple of years openly talking about my disability and how it affects me day to day; something that I hope that I can continue to do.
It took a big step to finally open up about my Muscular Dystrophy but I am so pleased that I did; I felt it showed the side of me that not many people would really realise is going on.
From there I even showed you guys the new adaptions that my specialists arranged for me to improve my walking; despite them being painful to use and then discussed why I stopped wearing them.
There have also been the harder posts when I shared how scared I am with the noticed decline in my walking and if it was time to use a wheelchair, what happens when I fall and more recently the fact that I felt I pushed myself too much making both myself and the boys vulnerable and then having William calling 999. There have also been the posts that I have shared where I have struggled mentally and physically and opened up to how I feel trapped in this broken body.

Maybe today isn't quite a celebration of a great landmark age but maybe it should be! I have survived 21 more years than originally expected. I have fought an illness that I know should have been beating me and I still defy the beast that it tries to be.


The thing that I am starting to realise is that I am still not really talking about it, about the daily struggle that I undertake, the amount of pain that I am in or how much it has really progressed; I am sure that I will cover these at some point.
Many of you have followed my journey and have a further understanding of my health and if you don’t then read some of the above posts. Many of you have met me in person and have seen first-hand what my health is like.
With all of this in mind I thought I would offer you a chance to ask questions to me about my health. Anything that you like and I will happily and truthfully answer them.
Ask away and don’t hold back! Either leave a comment or come and chat to me over on twitter (@mr_kitney)

11 comments:

Naomi said...

It's never nice to hit these type of milestones; but I'm glad you can spin it on its head to see that it's an anniversary of you battling and surviving longer than expected. Enjoy your day with your boys and hug them extra tight today <3

relentlesslypurple said...

I'm sure it was extremely difficult for you writing this but it's inspiring to see how you push through & don't let MD beat you. I actually don't have any question's but I'll be sure to throw them at you if I think of any!

mandy charlton said...

It is a milestone and thank God, you are writing again! Running is for silly people anyway and having met you, whilst it's visible and obviously visible you have a way of making it barely visible, I know that might not make sense but that's your fault, you're a contradiction ;)

Natalie Streets said...

I have a question. Did you fix your wheelchair? Because I thought we were both gonna die that time we met Nat in London!! Haha.

Natalie Ray said...

Haha Nat, his wheelchair is intentionally unruly for 'accidentally' running people over, didn't you know?? Keep battling Mr K, if it wasn't for your terrible grammar I'd say you were doing a grand job.
Nat.x

David said...

Always enjoy your posts, Martyn. They are a well written, passionate display of inner strength and determination.

Natalie Streets said...

Ah yes! I remember now. Also, lol!

Louise (Little Hearts, Big Love) said...

Martyn, you are amazing. I know very little about muscular dystrophy although I've learned more about it from what you've shared in your posts. I'm always in awe of how much you manage to do with your boys given that daily life is so much more of a struggle for you - I'm not sure I manage to do half as much with my girls! I can imagine this must be a weird anniversary and turning 21 is not quite so much a celebration as a time for reflection. What's always clear from your posts is that you have a huge amount of determination and inner strength and long may that continue.

Jeremy Barnes said...

every day is a gift brother. Keep on fighting the good fight

MissSparkles said...

Ive been a lurker of your blog for a wee while but after reading your post today felt I had to reply.
You are such a strong person and have so much to be proud of so cuddle those close to you tonight x

Cheryl said...

What a strong person you are ,I'm around the same age as you and I'm not so sure I would be so strong. You are doing amazing don't forget that :) x