Making memories for our young family as we live with Motor Neurone & Fabry's Disease

Blog post by Liz #2

June 7th, 2016

June is Motor Neurone Disease awareness month, so I thought I would bare my sole and offer a rare glimpse of our lives and the reality of living with MND. I apologise if this post offends anybody.

Yesterday I cried. I do that a lot lately. I am grieving for the life we have lost, a life that will never be the same again. A life before MND. It hurts knowing that we will never walk down the street holding hands, run around in the park with the kids, go to the beach, swim in the sea, or do countless other things that most people take for granted. It hurts and I am angry at the injustice of it all. MND has stolen our lives and changed us forever. I am no longer just Jason's wife........... I am his carer. He is wracked with guilt, he thinks that he is to blame, that he is a burden, but nobody is to blame, it just happened. We lay awake at night, holding each other, crying silently. it's too hard to talk, to think about the future, to discuss the impossible.......... power of attorney, end of life care, whether to resuscitate, where to die. It's too hard and it's too painful, so we just cry. We put on a brave face and try to live our lives to the full, but this is what nobody else sees. This is our reality, this is what MND has done to us! ‪#‎mndawareness

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