DAILY LIVING & MOBILITY

As My Body Changes, So Do My Needs with Muscular Dystrophy

Muscular Dystrophy

Kerry Thompson

Easy or hard

As easy or hard it is sometimes for me to admit or come to turns with, my body is changing in more ways than one, some changes I can control other’s are just part of having and living with Muscular Dystrophy. This can sometimes feel very lonely going though those changes when you're living with someone who’s able-bodied and will never really totally understand what it’s like to lose the simplest of functions. In the same breath, It’s also very easy to forget that your loved ones also go though their own feeling of worry and concern in a different way when watching your body change.

New airway

When I finally started using my new airway pressure machine (makes me look like Darth Vader's love child!) as I normally do, I take a few selfies then post (normally with a good filter I’m less scary looking with a good filter. I’m no spring chicken anymore. Normally my husband just laughs at me and says "do you really need to share everything?" This time around, though his comment was very different, it wasn’t the asking me if I was taking a picture, it was more the disappointing tone he had he seemed to be more funny about it than normal.

Didn't really think much

I didn’t really think much to it at that time, just thought he was being more moody than he normally is so just ignored it and carried on. It really wasn’t until later on, it came back to me and I really thought about how my husband’s upset tone really was and it bothered me a little. I’m not going to lie, my initial thought was that he was embarrassed that I was posting pictures of myself with my new equipment. To me that was the only possible exclamation I could come up with. If you know me, you know I love to share and a good picture unfortunately my husband doesn't have the same views.

I asked my husband if he was embarrassed, he turned to me and said "no, don’t be silly. I just don’t want people to say horrible things about you wearing your mask. You know how nasty people can be, I just want to protect you from the people who don’t have anything nice to say." I love him so much for that.

Harsh truth & Facts

Unfortunately, that’s the harsh truth to the world we now live in. Some people find it very easy to say harsh words, not thinking about the person or family behind the photo.

Disability hate crimes are on the rise over past few years. According to Home Office statistic hate crimes have increased to 29% in England and Wales over 2016-17, 7% out of that 29% were disability hate crimes that’s 5,558 people with some form of disability reporting a hate crime.

These negative reactions can have a massive impact on someone with a disability, I have in the past come across some hate though Facebook – I received private messages saying I should have been drowned at birth, I should have died at birth, I need to lock myself away from the general public. I cried for a few days thinking how I don’t know these people & why would they be so cruel and heartless, so I can understand and see why my husband feels so concerned. Sometimes when I post anything that could create negative reactions towards me. Maybe some people need to understand more about disabilities, but then who knows why some people do the things they do.

Now why I have this equipment

It turns out when I sleep, my throat collapses and I stop breathing for a few seconds – scary thought or what. Its' medical term is called Obstructive sleep apnoea (OSA) CPAP Machine. I’ve been given this fancy bit of kit called continuous positive airway pressure machine (CPAP).

What does this kit do? It’s a small pump that delivers a continuous supply of compressed air through a mask that either covers your nose or your nose and mouth. The compressed air prevents your throat from closing, to begin with I was given a full face mask, which made me feel very claustrophobic.

Now, I don’t know if it’s just me that does this but I always find myself agreeing with the professional when it comes to new equipment. Then I come home thinking why did you agree to that, as my mother always says to me "yes" they're professionals and "yes" they know how to do their job, but they don’t know you and how your body works. This is true.

Finally Listening to myself

Finally Listening to myself and what my needs are, I changed my full face to a nasal one. As crazy as it sounds the sense of more freedom on my face was more apparent I feel so much better using it.

Developing high blood pressure (hypertension), having a stroke or heart attack, developing an irregular heartbeat – such as atrial fibrillation, developing type 2 diabetes – although it’s unclear if this is the result of an underlying cause, such as obesity

This story has two parts

The negative side someone with disabilities can face, is it down to lack of knowledge and understanding or just pure hate!? The second part – Explaining why I need and use this equipment and the dangers I could face not having it.

I’d like to hear if anyone has experienced hate having a disability in any way? If you haven’t but the thought still stops you because you're scared you might, what do you think should be done to prevent these hate crimes towards people with disabilities?

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