Thursday, 30 July 2015

My Muscular Dystrophy


Last week I spoke openly about having a Dependant Personality Disorder.
This week I have decided to do the same but this time concerning my Muscular Dystrophy.

Despite openly talking about it at times I think quite a few bloggers were “shocked” by how “disabled” I really am after BritMums.
I think the misunderstanding came from two different points:

1. Although I mention it I haven’t really spoken openly and gone into detail about it.
2. I blog about everything that I do with the Boys from arts and crafts to long days out; within this I suppose, from the outside, you would mistake me for a healthy active Dad.

Before I write it in detail though I want to make one thing clear: I don't play on my disability and definitely don't seek any pity; it is a part of me, just as my right foot is a part of me and because of that I don't brandish it about. For me I would like people to see me for me rather than “the guy who has Muscular Dystrophy”
There are a few different types of Muscular Dystrophy; I have a strand called Facioscapularhumeraldystrophy (FSHD)

What is FSHD?

FSHD initially affects the skeletal muscles of the face (facio), scapula (scapulo) and upper arms (humeral). 
Symptoms may develop in early childhood and are usually noticeable in the teenage years with 95% of affected individuals manifesting the disease by age 20. It is a progressive skeletal muscle weakness that usually develops in other areas of the body as well; often the weakness is asymmetrical. Life expectancy is normal, but up to 20% of affected individuals become severely disabled and eventually must use a wheelchair as well as other aids.

Symptoms

•Facial muscle weakness (eyelid drooping, inability to whistle, decreased facial expression and difficulty pronouncing the letters M, B, and P)
•Shoulder weakness (difficulty working with the arms raised, sloping shoulder)

•Abnormal heart rhythm
•Unequal weakening of the biceps, triceps, deltoids, and lower arm muscles

•Loss of strength in abdominal muscles and eventual progression to the legs
•Foot Drop


How it affects me

I am categorised in the 20% of the individuals who have it severely.
Every muscle in my body is under strain and subsequently my muscles “twitch”. This, as stated above, affects every muscle. If I am walking and twitch I subsequently fall or if I am carrying something then I drop it.

FSHD, as mentioned above, affects the body with muscle weakness, what the above doesn’t tell you is that it is progressive weakness; ultimately all of my muscles are deteriorating and getting weaker.
Eventually my legs will get to the point that they will no longer be able to withstand my weight (However light I make myself) The safest option is to use a wheelchair.

My arms, like my legs, will deteriorate and no longer be able to lift of carry things. 


As you can see there is no muscle shape around the shoulder or upper arm. I cannot raise my arm higher than my chest. On this arm I have trouble lifting anything like a cup of Tea or heavier.
It already affects my speaking and I am known to slur my words especially when tired. Like the arms and legs this deterioration will happen to the point that my facial muscles stop working. 

Every single day I wake up in pain. My muscles don’t feel refreshed first thing in the morning. They ache and feel tense, EVERY muscle in my body feels like it is trapped within a clamp and by the end of the day they feel hot. This is then coupled with joint pain that goes hand in hand with what’s happening with my muscles and every joint feels like someone is pushing a large object between the two joining bones.
My health will get to the point where I potentially become immobile and possibly lose the ability to talk. If you were really observant though you will notice that I stated that every muscle twitches; this does include muscles of my heart and lungs and could lead to serious medical attacks.

I choose my Life

You would have noticed that I said that it would be safer for me to be in a wheelchair; however, it has been recommended that I do this but as it will continually get weaker, this would speed up the progression.
Every day I live with the pain. Every day I live with the fear that my muscles around my heart and lungs will twitch to the point that I could die. Every day I disprove that this is my last day!

I walk because I still can. I go out with the boys on trips so they have an enriched life. I do what I do every day and get up and do more! I disprove the doctors on every prognosis they have given. 

(According to them I should have died 4 or more times now and be a lot weaker than I am now)
This is my life and I am happy. I am happy because I get out, see people, play with my boys, educate them, I love and enter relationships, I work and teach children. I do this because I will always defy what my health decides and find a different way of doing it. My life is SO much more than health issues. I am kind, caring, intelligent, creative, cheeky and will do anything for anyone; as a previous post states “I am Amazing” and not because I deal with my MD.

I try not to worry about “what if's” instead I live in the now. Today I touch people’s lives  for who I am as much as they touch mine. Today I am me.



What counts in life is not the mere fact that we have lived. It is what difference we have made to the lives of others that will determine the significance of the life we lead.

Nelson Mandela

50 comments:

Natalie Ray said...

Amazing post Martyn. What I particularly love about it is the list of your positive attributes, I'm so glad that you can see them. Especially after all the comments I've had about how fabulous you are having featured you on my blog. As you are already aware, I find you inspirational. The struggles of parenthood, work, lack of sleep etc. pale into insignificance when I remember that you are doing it all whilst fighting this arsehole of a disease. Keep up the awesomeness special K ;)

Martyn Kitney said...

Thanks Natalie! I might not always feel or see them but that doesn't mean that I don't know that there's more to me than my health. It bugs me a bit that some people (a few in society really) look and make a big deal about my health when ultimately it's may health and my life. There's many more things that make me me.
But it is an arsehole of a disease but I won't ever stop being me because of it.

Unexpectant Mother said...

I love this post. Just seeing you say that this is how it is and you just get on with it. Meanwhile I'm whinging cos my back is a bit sore and I'm a bit tired. I applaud you for talking openly and honestly x

Laura Powell-Corbett said...

This is a fantastic post and I never realised about this. Like Natalie I applaud you for being open honest and yourself as always. X

Sarah Howe - Run Jump Scrap said...

It's actually really interesting to know more about the condition as well as you how y refuse to let it get the better of u! I've said before I was surprised how more affected you were at Brit mums as you don't come across the way online. Keep doing what your doing, bring positive and living in the now! Your boys and you are all that matters xxx

Sarah Howe - Run Jump Scrap said...

Omg my typos!!!! U know what I mean xxx :-)

Sarah Willox Knott said...

What a great, honest, open and informative post. You are an inspiration to us all with your attitude and strength. Thank you for sharing and educating us and hope you go continue to defy the doctors!! ☺️

Rachel C said...

A really honest and open post. I once taught a little boy with muscular dystrophy (duchennes I believe it was called?) - he unfortunately had a shortened life expectancy and his decline was really rapid - at the beginning of the school year he could stand up to go the loo on his own and by the end of the year he had to have two members of staff to hold him up. It's a cruel condition, but I love your positivity about it. You're so right that somebody shouldn't be defined because of a health issue - we are all so much more than that! thankyou for sharing this xx

Martyn Kitney said...

Thanks Nat. Everybody has their own issues. I'm use to mine so when I have a really bad day I'm a little more whiny then. So ill let you off! ;)

Martyn Kitney said...

I suppose a lot of people don't realise. I think l that's why I needed to talk openly about it.

Martyn Kitney said...

Haha Sarah you really need to sort your typing out today!! Lol

Thanks though. Some days are far harder with it than I'd ever happily admit. And those days it nearly does beat me. But saying that overall it doesn't get the best of me. There's more to me than just a disability, however much some people might focus in it. I'll always live in the now it gives much more to my life and the boys.

Martyn Kitney said...

Thanks Sarah!! I don't see myself as an inspiration I just do what I can for myself and the boys. But I appreciate it anyway.

Martyn Kitney said...

Thanks Rachel. Duchennes is a horrible strand of MD it does happen quickly and it's sad to see such a dramatic change. The process is the same with FSHD apart from the time frame, I'm thankful at least that it drags ot out more. MD full stop is a cruel condition. But I'm not defined by it and never will be. It's just a another part of me. But the rest is far better!

Natasha said...

Such an honest post! You really are an inspiration. I think its wonderful that you're able to focus on the positives in your life and not let your health circumstances affect your entire life. Your kids are lucky to have you x #bigfatlinky

Martyn Kitney said...

Thanks Natasha. For the boys sake as well as my own sanity I can't let it define me. And there is so much more I can offer the world than just a disability. :)

Silly Mummy said...

Really interesting to learn more about what it's like to live with MD. Think your positive attitude and determination are fantastic. Great Mandela quote. #bigfatlinky

Mama, My Kid Doesn't Poop Rainbows said...

A fantastic, interesting and brave post. Thanks for the information, it's always great to learn more about the people behind the blogs. Love your attitude x

#bigfatlinky

john adams said...

As you know Martyn, I know quite a lot about Muscular Dystrophy. It's a little known condition and anyhting to raise its profile is a good thing in my eyes. It can't be easy living with a condition that makes your muscles ache in this way but I admire they way you speak up about it without making it "you". #BigFatLinky

Luke Strickland said...

Well I've learnt a lot from reading this post! Thanks Martyn #bigfatlinky

Mummascribbles said...

Thanks so much for sharing this Martyn, I had no idea just how awful this is to live with. You are incredible. Some people would give up and wouldn't do half of what you do. It can't be easy to deal with on a daily basis but you should be so proud of what you do and how you deal with it. Thanks again for making us more aware. And thanks for hosting the #bigfatlinky

Emmas Mamma said...

This post has left me rather speechless. Thank you for sharing something so personal and painful. I can't imagine the pain and fear you live with everyday but I fully respect you for how you choose to live your life! Good for you mate! #bigfatlinky

Nigel Higgins said...

Fantastic honest post Martyn I love the way you are so positive and so going to live life to the full really interesting read about the condition I learnt so much heard the name but never knew much about it.
Thank you for sharing must of been very difficult

Random Musings said...

Great post! Obviously I've heard of MD but I had no idea how bad it actually is. Your positive outlook is brilliant and I love that you don't let it stop you having days out etc with the kids. Keep proving the doctors wrong! Thanks for hosting the #bigfatlinky :)
Debbie
www.myrandommusings.blogspot.com

A Cornish Mum Blog said...

Mr K you've had me in tears....despite speaking to you online pretty much every day...I had no idea of what you truly cope with every day. I love that you don't let it beat you as much as possible, and I think you are so much stronger than even you realise and pretty damn amazing - don't worry we can go back to trading insults later ;) Seriously brave post,

Stevie x

Martyn Kitney said...

Thanks for commenting.

Martyn Kitney said...

Thank you. I felt it needed to be said and about time for an outing.

Martyn Kitney said...

Thank you John. I know not many people are aware of it and if they are there's lots of types for people to know. Let alone how it affects you individually.

Martyn Kitney said...

Thanks Luke. It's good to talk and share.

Martyn Kitney said...

Thanks lisa. I don't normally talk about it as I know it isn't pretty. But then it also needed to be said. I'll never give up and ill always do what I do.

Martyn Kitney said...

Thank you. I'll never be less than me.

Martyn Kitney said...

Thanks Nigel. It's horrid but have to stay positive and live yo the fullest. I'll never be one to hide behind any of my problems when there's so much more to me.

Martyn Kitney said...

Thanks Debbie. I will. I'll always do more and what I can for the kids.

Martyn Kitney said...

Thanks Stevie. I'm sure you didn't but then I don't think most people would. I won't hide behind it but I know I hide it. But as I said that's only because it's part of me but not all of Mr. There's so much more and I want people to know me for that reason. Some days I'm not as strong as I want to be. But I have to keep trying. It's for no one but me to look at and live with. My health and my choice. I just hope or at least hoped that people would see more to me rather than just focusing on the health.

Cuddle Fairy said...

I'm amazed by your positivity & honesty in this post. I'm happy to learn more about you but so sorry you have to deal with this condition. Thanks so much for hosting #bigfatlinky

Martyn Kitney said...

Thank you. I can't do anything but stay positive with it. It's a horrible disease and can be tough going but I am tougher. There's so much more that makes me who I am. That it hides in nothingness in comparison. I haven't spoken in depth about it because it doesn't define who I am. Yet recently it seemed to be a "big deal" for some people which is a shame because if they saw past it they'd see me and that's a cool thing to get to know. :) thanks for commenting.

Angela Milnes said...

Your an inspiration Martyn! Thanks for sharing. It is important to raise awareness for health problems and sharing experiences can help others too! I do not have your condition but have a lot of muscle wasting from my own illness and understand how it can feel at times. We cannot let it define us and blogging is a fabulous way to make something of our lives when we are unwell!

Angela from daysinbed.com

Mummy Fever said...

Great post and I love that quote at the end ! Positive. You don't let it define you, you are lots of things before and I love that #bigfatlinky

Rob Carew said...

Really inspirational post. It's hard to talk about the things that others see as extraordinary when they are the every day for you, but I think it's important. The more people are able to see and relate to these types of challenges, the more they can see the person behind the illness. Great job. #bigfatlinky

International Elf Service said...

This is an amazing and informative post and I LOVE your take on it - so positive and so YOU. What a brilliant guy you are!

alan herbert said...

Martyn it makes my struggles pale into insignificance. MD was one of those diseases that I knew the name but nothing else.
It truly shocked me to read about how it affects a person and worse what will happen.
Keep smiling and fighting. Prove the Drs wrong.

Ann Winters said...

What a brave post. And I am amazed at how strong and brave you are. I wasn't at Britmums, and I had no idea you had MD, as theres so much you do with your kids! That shows that how a person deals with their disability impacts life greatly. Keep you positivity!

Martyn Kitney said...

Thanks Angela. I agree it can't define us. We're so much more. Blogging is definitely fab for that!

Martyn Kitney said...

Thanks. It's how I keep going.

Martyn Kitney said...

Thanks Rob. That's the thing, a lot of people see the illness and not the man behind it. Good either way to spread awareness.

Martyn Kitney said...

Aw thank you.

Martyn Kitney said...

Thanks Alan. Everyone's struggles are their own and it's difficult individually. Will do buddy.

Martyn Kitney said...

Thanks Ann. There is lots that I do but I do it for them. Doesn't matter about my health. If I can help one person have an easier or nicer day I will and even more so for my boys.

Jeff Page said...

Thanks for writing this post. As a diabetic I understand completely how you will fight to defy the odds, disprove the physicians, and continually work to avoid being labeled the "guy with MD". I sometimes revel in the reactions when people learn I'm a diabetic. It's an odd thing, but gives me the strength to move forwards on the "bad days". You've done so much to enrich so many lives through your written words, not to mention the experiences that you've shared with your kids. Keep being who you are and enjoying all that you have...you certainly have reminded me that where we focus our energy is where we "live". Many blessings to you and your family!

Hectic-Dad (Jeff Page)

Suddenly Mummy said...

I have a dear friend with pelvic-limb girdle muscular dystrophy - it is indeed, as you say, a cruel disease, and although I have known about her condition for years now, it is only recently (as she has been re-homed into an adapted home and the electric wheelchair has been delivered) that it has begun to hit me how hard she struggles and how poor the prognosis is for her as she rarely even mentions it. Despite everything, she raises her two young children and continues to work part time, struggling to remain mobile as much as she can in the hopes that it will mean she can do more for longer. Thank you for writing honestly about this little-known condition.

Katie Taylor said...

You are very brave x