The ever changing life living with Muscular Dystrophy

Life can change in the flash of a moment. Something we learn to adapt to whether you are the picture of perfect health or living with a disability/impairment.

My life is certainly no exception of this, life certainly isn’t predictable or come with a handbook to guide you through the timelines of life, it can change in the blink of an eye. Living with a rare form of muscular dystrophy a progressive muscle weakening condition, has certainly taught me the importance of living in the now.

I am the second generation in my family with this condition.

I have experienced both worlds the before and after Muscular dystrophy. The beginning of my life I could walk that now just feels like a lifetime ago.

I’ve had a powered wheelchair for going on 14/15 years now the transition wasn’t the easiest I’m not going to lie. I was angry I felt like my independence was ripped away from me, sounds rather dramatic when you say it out loud ‘ripped away’ but that’s how I felt at the time and for a long time after that.

It takes time with a lot of hard work on yourself as it can feel like everything you knew of your life has completely gone, it takes work, adjusting and taking control, rising above the challenge’s we are given. As crazy as this might sound to some of you if it wasn’t for those challenges we could never appreciate what we have.

The realisation of how big of a game changer a wheelchair could be.

Over the years I have had to adapt to the changes in my body, muscles gradually becoming weaker and losing the ability to do the simplest of tasks like washing my face this is the newest loss I have had to slowly come to terms with as it doesn’t just stop straight away it’s a gradual loss over time.

No matter how strong I am in general it’s still a hard reality to come to terms with mentally and physically, I don’t think that is something that will ever change for me, I still get angry and upset I just have a better understanding of myself and how I need to mentally deal with the loss of muscle memory.

This is just one of the reasons i started writing as well as becoming a disabled advocate, If it wasn’t for my dark days and all of the difficulties I have gone through and continue to do so living with MD, accepting my life from my wheelchair to losing other abilities I wouldn’t be here now to write about it.

It can be emotionally and physically devastating for some, just the thought of having to use a wheelchair as well as grieving the loss of a life that once was.

I leant to embrace my wheelchair and the freedom and independence it gives me. It’s a part of me the same as what comes next living with muscular dystrophy it taken me many years to get to where I am today, a lot of soul searching as well as theraphy.

This is why I believe it’s so important to share our voices and experience’s good and bad, if it helps just one person within the disabled community to feel less alone in their own struggles dealing and coping with the challenge’s faced personally and on a global level. You never know your experiences will help and uplifted.

Kisses K

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Posts you might like to read

Embracing your disability

How Muscular Dystrophy shaped me as a person

Walking to Wheelchair – my story of transitioning

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