As my body changes, so do my needs.

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, it can sometimes feel very lonely going though those change’s when your 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.IMG_0791

when I finally started using my new airway pressure machine  (makes me look like Darth Vader 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 lol) Normally my husband just laughs at me and says do you really need to share everything, this time round 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.

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 hasn’t the same views.

So I asked my husband if he was embarrassed, he turned to me and said no don’t be silly baby 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 and I love him so much for that.

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 that29% were disability hate crimes that’s 5,558 people with some form of disability reporting a hate crime.

These negative reaction 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 why I don’t know these people why would they be so cruel and heartless, so I can totally understand and see why my husband feels so concerned sometime when I post anything that could create negativity reaction towards me.

Maybe some people need to understand more about disability, 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 – It’s medical term is called Obstructive sleep apnoea (OSA) 

CPAP Machine 

So I’ve been given this fancy bit of kit called continuous positive airway pressure machine (CPAP)now 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 closing, to begin with I was given a full face mask made me feel very claustrophobic.

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

Nasal mask 

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.

The danger’s I may face if I don’t control my OSA I increase my risks of:

I guess this blog has two parts.

The first part – 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 danger’s I could face not having it.

To end I’d like to here if anyone has experienced hate having a disability in any way or if you haven’t but the thought still stops you because your scared you might and what do you think should be done to prevent these hate crimes towards people with disabilities??

Kerry x

4 thoughts on “As my body changes, so do my needs.

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