Muscular Dystrophy still a very misunderstood condition, if you are familiar with the muscular dystrophy then it’s probably easy to tell if someone has it. But unfamiliar you could easily mistake it for something else like MS say. I can’t tell you the amount of times this has happened to me!
However, muscular dystrophy affects many of us in different ways, were not all the same but for me, enlarged tummy that’s to the side and the use of a wheelchair these are very visible to the eye. Behind the clear visible foundations of my appearance is very different me.
The more non visible and less understood is how it feels when our muscles do not work properly, understanding this is as much equally as important because it informs how caregivers, parents, family, and friends interact with us – it can also helps to not only build greater empathy within society but also a better understanding into a world that you may never be apart of.
I’m not going to lie and say having muscular dystrophy is like running in a field of wild flowers on a summers day (unless you have hay fever of course!) at times it is so frustrating i need that field to scream so loud i lose my voice, on a bad day you will probably hear me say my body hates me – my muscles are weaker because of the absence of vital proteins, emerin, lamin A, lamin C, the small protein called emerin, which is normally located in the membrane that surrounds each cell’s is the most important part to movement. But it doesn’t just affect my arms and leg muscles, my heart and lungs take a MD hit also – if that has completely gone over your head, as i know it would if I was reading this for the first time you would see my confused bewildered face, so think of it this way it’s like getting vitamin C from an orange but your body constantly rejects it.
Imagine trying with all of your might to open a bottle of fizzy and nothing happens! in my head, i can still open that bottle – i see people do this all the time without thinking twice, yet when i try i am using every last bit of energy i can muster up without achieving any results.
It’s the simple things/tasks that are supposed to be easy that are now so hard it becomes draining just thinking about even attempting thanks to muscular dystrophy. In the previous example, replace the bottle of fizzy with anything else, and the underlying frustration remains.
I count myself lucky that i’m still able to stand at 42, yes with a little help from hubby but by no means does that mean it’s easy. If I stand on a surface that is uneven in the slightest, even a crumb, i fear i might lose my footing and fall, trust me when I say it’s like watching a tree fall in slow motion – if i haven’t got my body in the position i’m done for with gelly legs and twerking down to a tee it’s hard to get that balance back. If any of those things happen i’m immediately thrown out of whack, i might break a bone, and lose that ability forever. Most of the time, a change in my footing isn’t enough for a fall, but it is enough for me to feel like I’m unable to control my own life.
Remember my lungs it’s tiring having air pushed into your lungs three time then sucked out again twice a day but i know in the long run it will more than likely save my life as it keeps them as clear and healthy as they can be.
I have had many days where i’m so exhausted, and I feel like i can’t even think let a lone be productive, my body is screaming at me to stop. Meanwhile, the world can feel like it’s functioning on six hours of sleep around me, Just think of how much more i could achieve. Yes a girl can dream but in reality i know it’s just that a dream.
As you have probably worked out by now i am very limited to what i can do day-to-day myself, i do rely on having help with daily activities, whether it’s my hubby, family, friends or even my PA’s they are primarily acting as my arms and legs, i will of course still try first anything new as i like to push myself but in the same sentence it’s also like a double edged sword a gentle reminder of my condition but also that i’ll always now be reliant on someone else, while i’ve gotten better at asking for help and how positive i am in reality no matter how much I hate that “burden” word, It’s hard sometimes to stop yourself feeling that way to my friends and family.
What i’ve written so far sounds all doom and gloom and very negative especially coming from someone who typically has a positive outlook on life. My sole goal was to explain what muscular dystrophy a progressive muscle weakening condition feels like, so that you, the reader, understand it that little bit more. One can understand the biological and genetic processes behind MD while overlooking just how it feels for it to be inside of you.
Though all negative “feels.” i wouldn’t have my life any other way, i have amazing family and friends – a wonderful husband that i probably never would’ve met if it hadn’t have been for my MD, that supports me in every crazy adventure i take us on. I truly believe it’s made me a better person, given me a passion for campaigning, writing none of which would ever happen if it wasn’t for MD, yes it might take me longer to achieve things and my life may not have started with muscular dystrophy but i won’t let it stopped me from living a life i choose.
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2 thoughts on “What having Muscular Dystrophy feels like”
Great article Kerry. I agree with the not being able to open a bottle of fizzy and having some days where I am exhausted, Strength and stamina are a problem for me with Cerebral Palsy, hydrocephalus
and severe visual difficulties. I have good support from my husband who is amazing. Family support is more difficult but at least I have my husband. This article has made me understand more about muscular dystrophy.
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Thank you – that’s great you have your hubby….
Try not to scream to much on bad days!!
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