Saturday, 21 November 2015

I'm Scared it might be time.


It is difficult for me to admit but I am struggling at the moment.
I have been noticing it more and more this last month; my walking seems to be getting worse.



It really hit me this week when I struggled to walk what would be a small distance.
Every single movement seemed off and strained.

The thing with my Muscular Dystrophy is that it is a cruel illness that gets progressively weaker.
If you read my previous post about it (above) or listened to my Podcast interview with Tim you will know that this horrid disease will eventually make me lose the ability to walk, use my arms, talk and then weaken major organs in my body. Let’s be honest it’s a rubbish thing to live with; yet I do live with it every day of my life.

It first manifested when I was 13. At that time I was able to do what every child could do. I could walk, run, jump, climb stairs and be quite active. This is evident in the fact that I was a great Ice Skater, a member of Scouts and took part in learning Karate. Apart from the gradual weakness and the occasional muscle twitches you wouldn’t have known that there was anything different about me.
What has always seemed to be apparent is that I get sudden changes in what I am able to do. A clear example of this is being able to climb up and down stairs. This simple process was lost over a few months in 2008. I remember clearly living in our first married home with the Boys mum and being able to get up and down the steps into the property. By 2009 we had moved property and at this knew one I had to have a stair lift fitted because I couldn’t do more than climb one step; even then I found that great difficult. My balance had majorly changed and with that the muscle twitches in my leg increased making it difficult and dangerous to do anything around steps and stairs.

It just seemed to happen. Three months it took us to move and within that time my body changed.
Each step of the way I have adapted and found a new way of doing things; it has always been my way to adapt rather than give up.

Earlier this year it was recorded by my specialist that I had become incredibly unstable on my feet. My balance was off, my foot drop had increased and my walking had become poor. A solution at that time, if my long standing readers remember, was to use straps and hooks to attach my leg to my foot and prevent the foot drop and to keep more balanced.
I have used these but admittedly not as often as I should. They hurt and walking in them causes me more pain than I currently have anyway.

The effort it has taken me to even put one foot in front of another has been more than I expected.
In truth it has left me totally heartbroken that I am struggling as much as I am.

Could this be the start of the end? If I am struggling this much then I need to use a wheelchair but the moment I do it'll lead me down the darker path of this illness and allow the progression to quicken.
I am trying to think about this as logically as possible:

I have put on 7lbs since June. Although this hasn’t changed my body shape and I am still slim, it has always been advised for me to remain at a set weight. Even a bit more could knock my balance and walking off. So it could be this.
The weather has changed. Coming to the end of autumn we are now having strong winds. This in itself is going to affect my balance and make it more difficult to walk. So, again, it could be this.

There is also the fact with the weather change that it has dropped in temperature and my legs are constantly cold; this could potentially be affecting my joints and muscles when walking.
There is also the option that it is a combination of all of these things. Each point combined could have created a seasonal difference in how I am walking and therefore it is something that will pass.

I am trying hard not to think too much about the worst case scenario. Yet, every step I struggle, within every movement I shake, every inch my mind tells me “this could be the last time I will walk”.
For the first time since diagnosis, I am scared. This could be that moment where I swallow my pride, realise that I can’t struggle forever and start using a wheelchair. If it is the case then this is the start of the worst part of this stupid illness and I will have to just learn to live with that.

I have never given up and I still won’t.
I will still do what I do with the Boys and be as active as possible. I will still use my Fridays as my day off and rest and recuperate but in the back of my mind I will start planning what to do next.
A Bit Of Everything

38 comments:

Tommy Manzie said...

I admire your never give up attitude Martyn. I can't begin to imagine what you go through each day. Always on hand for a piggy back even with the extra 7lbs. When the time comes for a wheelchair, it's not giving up, it's adapting, just like those role polys

A Cornish Mum Blog said...

Oh Mr K I hate that you have to face so much, I feel angry for you at the unfairness of it all! You are one of the strongest people I know and cope with so much without moaning and even sparing the time to listen and indulge others petty issues. I hope the time hasn't come yet but if it has you'll cope as you always do and with dignity.
Stevie x

The Anxious Dragon said...

Oh Martyn this is such a sad post. You are one of the nicest people ive met through my blogging, funny, smart and have awesome taste in tv programs. You have a strenght of mind that I think everyone who knows you admires, so it seams so bloody unfair that your body is letting you down.
I echo what Stevie said, when the time comes tonuse a chair it will not be that you habe surrendered to your illness, it will be another adaptation so that you can keep going and being the increadable man that you are. Much love Tracey xx

Alan Lacasse said...

Mr K I cannot begin to imagine how hard it must be to lose the ability to walk, and even worse to lose it gradually.

I'm sure as with everything that is thrown your way. You and the boys will adapt and overcome.

A great post.

Marianne Hopwood said...

I admire your courage in talking about an incredibly tough break. I hope you are correct that it could be a combination of factors including the cold. Could focussing on ways to address those potential things help you to stay positive (although I think most of us would be screaming at the sky for the unfairness of it all)? Finding a yoga teacher with good training and attitude could help with balance, and I don't understand why it works but I found acupuncture effective for pain. If well wishing can help you have a bunch of that coming your way

The Smallest Of Things said...

Oh Martyn that must be so hard to be dealing with and you are so brave being able to write about it so openly! I admire you :) I'm sure whatever happens you will cope with! Sending hugs xx

Jeremy Barnes said...

The worst thing that could happen is a bad fall. There are times when pride can be our worst enemy. You and your boys have shown incredible strength and resilience in dealing with this issue. I wish you luck

Hannah Brooker said...

:( big hugs Martyn. You do have incredible strength and courage and sharing these thoughts and your fears is inspiring. I'm sorry that you're going through this, that you have so much to think about for the future. You have mentioned some thoughts up there so maybe seeing if you can change your duet slightly, and trying to keep as warm as possible to help would be good. The worst thing would be to struggle on and be forced into a chair through accident please be careful. I understand your fear (for you describe it so well) I wish this wasn't something that you had to deal with, you're such a wonderful guy x

Cardiff Mummy Says said...

I'm so sorry to hear of everything that is happening, Martyn, but I really admire you for writing about it. Such an emotional post and I can't even begin to imagine what you are going through. Someone else mentioned yoga above - as a yoga teacher myself, I would echo that comment, as it would help strengthen muscles and improve balance and coordination. Shame you don't live closer as I could show you some poses that may be beneficial. Take care of yourself xx

Natalie Ray said...

I'm very sorry to hear that things have got so much more difficult for you, it stinks. And I do recall a conversation we had about "certain" people having an "unlucky" accident involving being run over by a wheelchair. So I think that "certain" people need to start watching their backs... every cloud ;)

Martyn Kitney said...

Thanks Tommy! Ha! I appreciate it :) I hope you're right, just need to get my head around it

Martyn Kitney said...

Thanks Stevie. There isn't really any reason to moan. It just takes energy away and brings all the negativity. I'm sure I'll adapt when the time comes.

Martyn Kitney said...

Aww thanks Tracey! It is unfair but something that had to be dealt with.

I think because I've spent so long fighting and avoiding it that ive made it it to be a big thing. I know I can't avoid it though so sad that it's come to it.

Martyn Kitney said...

Thanks Alan. It's something in some ways that you get used to it but when the bigger changes happen it sure is tough.

I hope so, am sure we'll find a way.

Martyn Kitney said...

It could quite be numerous reasons or just the big change. I hope it's the first.
We are doing subtle things to help. Movement and balance exercises but these are more to keep me going long than correcting it. I might see if I can find a private teacher though and give it a try.

Martyn Kitney said...

Thank you. I really appreciate it.

Martyn Kitney said...

Yes, a bad fall could be terrible and tbh ive my near misses. I suppose ive put this at such a bar level that now it's close it seemed bigger. Thank you, I'm sure we'll adapt.

Leanne said...

Progressive diseases are so awful - you know where you're heading and all you can do is fight to stay well for as long as possible. I so admire your determination to stay on your feet despite the scariness of it all. I hope you get a remission or some other blessing to give you more time out of that chair. x

Kyles @ Pickles and Pords said...

This was gut wrenching to read. It certainly says something about your way with words that you are able to convey this terrifying reality in such a powerful way. I hope that some brilliant medical scientist somewhere comes up with something to help keep you up and active with your beautiful boys for a long, long time. #abitofeverything

Lady Nym said...

I hope so badly that it's a combination of weight change and weather and will pass. Nobody should have to go through a progressive condition like this. The fact you're able to write about it and educate others and the example you must be setting though, are admirable.

#abitofeverything

Tracy said...

This must be such a hard thing for you to have to come to terms with but we can be strong in mind if not in body and you come across as a strong man. I agree with the lady above. You are educating people and it's admirable. I'm just sorry that this is happening to you. #abitofeverything

Absolutely Prabulous said...

My God Martyn. I had no idea you suffered this illness at all! I admit I've not popped over to your blog in a while but whenever I have, I've seen the home schooling posts and didn't look at anything else. Am stunned and so sad reading this, I just don't what to say. Others have said it beautifully. #ABitofEverything

Martyn Kitney said...

Thanks Hannah. I'm watching the weight and dropping a few pounds each week now which is a start. I've got my winter woollies out too so should keep my legs warmer. So hoping with these that it'll help a bit. But we'll see. I know, the worst thing to happen is fall and injure myself to the point that I actually need it, or worse.

Martyn Kitney said...

Thanks! I'm looking into yoga now, to see if I can do a one to one slot with someone. Hoping it'll help a little and be enough.

Martyn Kitney said...

Thanks Nat. It does stink. Haha yes, definitely!!

Martyn Kitney said...

Thanks Leanne. That's exactly it. There's always the end result and it's to do what you can in the meantime to cope with it and stay as well as you can. But that end goal is always coming....just when. Thank you.

Martyn Kitney said...

Thanks Kyles. I hope that's the case too! Sorry it was a hard read. But thank you for taking the time to read and comment.

Martyn Kitney said...

Thank you Lady Nym. That's the hope at least to show awareness, stage by stage. Fingers crossed it's the combination of things though.

Martyn Kitney said...

Thank you Tracey. I'm trying to. I've got to keep it up for the boys sake at least and carry on. Just hard to go through at times. But ill always carry on and adapt some how.

Martyn Kitney said...

That's ok. You're not the first to not know. Shocked a few people back at Britmums when they met and saw me. Although I do mention it I suppose I don't write about it this way enough. But thank you anyway.

Tracey Abrahams said...

Im coming back from #abitofeverything. Thanks for sharing this with us, Tracey xx
P.s I think as and when you have a chair, you should totally deck it our like Davros's chair (my sad attempt at homour) xx

Agent Spitback said...

Thank you for sharing a bit of your life and thoughts Martyn. I was surprised as well and hadn't realised. I can't begin to imagine what you are going through. I admire your fighting spirit and determination and thank you once again, for sharing as it has shown me, just a little on what you must go through on a daily basis. Very poignant post.

Unexpectant Mother said...

I suppose you have to take these things one day at a time, it could be the last time you walk, but it might not be. The weather has been really truly shocking and I hate going out in it and I only have poxy raynauds. Don't push yourself too hard! And get some thermals ;-)

Martyn Kitney said...

Thank you. That means a lot! I will always share. Any information is just providing more awareness for a rubbish illness.

Martyn Kitney said...

Haha I've got my thermals now! Such an old man!
Yeah, it's all trial and error in these situations with what is possible. I won't give up but do need to think more carefully about things!

slouchingtowardsthatcham.com said...

Keep fighting the good fight, Martyn. It's a bitch knowing you are fighting against a progressive condition - I watched my mother-in-law battle against MS for years before finally succumbing to a wheelchair - but, if nothing else, you are teaching the boys such a valuable lesson about the value of not taking the easy route. You're an inspiration to them - and to others.

Tanya said...

I admit I don't know Much about muscular dystrophy except that it gets worse and has no cure. For 5 years Throughout my teens my mum was in a wheelchair, although she was ill for a good many years before that. I spent a lot of time caring for her (I still do, although she is no longer in a wheelchair) as her child I never felt that I missed out on anything because of her illness. I actually have a lot of fond memories of her in her chair (like trying to push her round this massive grassy hill and nearly tipping her out!) When she was no longer in her chair I struggled and felt like something was missing, it was bizarre being able to walk along side her when we went shopping instead of behind her.
Fight as much as you need to but don't feel you've failed if you go into a wheelchair. Having grown up with a parent in a chair, I can honestly say, (from the child's view) it's not all bad. X

Tania Jayne said...

Your attitude to your illness is fantastic. I wish more people would look at how to adapt so they can still participate in as much of life as possible. I have Ehlers-Danlos Syndrome & have just had to make the decision to use a wheelchair. My assessment is in two weeks. I will be a part time user to try to preserve muscle tone but will be using the chair for outside of the house, as I'm currently not able to get out. I intend to toe propel at times to exercise my legs & will be walking for short distances with the handle bars for support. It's going to have such a positive impact on my life by allowing me to do more & I hope that as & when you need to start using one it will have a positive impact on your life too. Xx

Tania | whentaniatalks.com