I am ineligible for assisted dying because my disease is not the type that allows death to be foreseen "within 6 months".

I suffer from a progressive, congenital, neurological illness. It has robbed me of any quality of life. It has isolated me from friends and family. The loved ones that I do seldom get to see can only stay for a few minutes before it takes its toll on my physical health. I cherish the snippets of information carers and visitors tell me. Of course, I would love to hear more but my worsening hyperacusis and tinnitus prevent that.

Communication is limited because of partial voice loss, extreme light and sound sensitivity, also an inability to write or type. Physical limitations make me unable to care for myself and I certainly can’t do any hobbies. I started learning to read braille but the limitations of my hands and arms forced me to stop.

Being housebound and in near darkness and silence, reliant on carers for everything and only able to eat liquid food, has sapped the joy from my life. And my life is very, very boring! The days are tediously long.

Living with this illness for the last 30 years has shown me how I will deteriorate. It will be a long, slow, painful road of physical decline which will be mentally distressing for me to experience and for my loved ones to witness.

If the option of an assisted death were available to me, it would alleviate the certainty of an awful, prolonged death. Choice is enormously empowering. My loved ones would know the level of suffering I choose to endure would be my choice. It is not anyone else’s decision, only mine. I would have a dignified choice about when and how I exit this existence.

As it is, I may be forced to endure years of torture against my will.