My advance care plan

Advance Care Plan – the conversation no one wants to have, but really should be having – is there a misconception of what this booklet actually is?

I am fully aware that death will come for me at some point in life especially living with a rare form of Muscular dystrophy a progressive muscle weakening condition – I am definitely not Wonder Woman as much as I would love to live though the future ages that’s just never going to happen!

Three years ago my health took a turn for the worse what seemed like a common cold and chest infection quickly took the wheels from underneath me – I woke up one morning and begged for an ambulance as dramatic as that sounds I just couldn’t breathe, I was rushed into hospital, but I wasn’t in any condition to make any decisions for the first few days. It turns out I had pneumonia and a collapsed lung and hours away from my other lung collapsing.

I remember my younger brother being in a very similar situation many years ago also with pneumonia and a collapsed lung, it was touch and go on whether he would pull through. Thankfully he did but he doesn’t really remember very much as he was so ill.

However, this isn’t a story about how we are both here to tell the tale. Nor is it about not taking life for granted. Don’t get me wrong, I am absolutely grateful to be living a wonderful life with my husband, especially when some doctors love to say that muscular dystrophy is a disease that takes us young!

When I was introduced to the advance care plan i didn’t hesitate once, it was a no brainier why wouldn’t I fill one out? I spend so much of my time fighting and shouting front the roof tops about how every disabled person deserve to have their independence and the right to choose how they live their life in a world that makes most of our decisions for us.

Having this booklet means I take control of just a small part of my life but it’s mine no one else’s these are my wishes, my thoughts and my wants. Nobody else has made theses decisions for me BUT ME.

But it’s not just about holding on to that independence, it’s also about my husband and family. It’s already hard enough when you lose a loved one or a loved one goes into hospital. Adding, making decisions for someone else to an already stressful and emotional situation, by filling out an advance care plan you have taken that one mental battle of what’s right or wrong way.

It is never too early to start your advance care plan until it’s too late. It’s something you can come back to over and over because yes sometimes you change your mind or situations change, I make sure I look over mine every year making sure I’m still happy with every decision I’ve made even adding little bits I might not have yet filled out. The beauty is there is no right or wrong answer because it’s your needs and wants, take that time to decide/discuss with your loved ones and healthcare professionals.

I also believe this isn’t just for people with health issues or disabled people it’s for EVERYBODY.

Last year I was asked to be involved in the making of these video with the NHS and The Open University take a watch CLICK LINK – read this article on the advance care plan

I would love to hear from you do you already have a advance care plan? thought about having one? Or have you never heard of one before now?

Kisses K

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