There is just no logical reason why living with Friedreich’s ataxia in 2019 is still such a struggle. I have come to accept my fight with Friedreich’s ataxia will never end, it hasn’t been easy it will never be easy and it most certainly is not easy in the present moment but there is nothing I can do to change the fact I have Friedreich’s ataxia so I either have to learn to live with it or don’t have a life and let the Friedreich’s ataxia take over my body.
But what I CANNOT AND WILL NOT EVER ACCEPT IS THE CONSTANT NEED TO FIGHT FOR EVERYTHING I NEED TO LIVE. I need help (somebody who can use a hoist) to get out of bed in the mornings, use the bathroom during the day, and to get into bed at night – these are of course the absolute minimum amount of everyday things I need help with. You might imagine meeting these needs should be easy enough, well you’re wrong, and I have had to fight since 2016 for the little help I do receive now. When you apply for PA hours they are very quickly sanctioned (because my occupational therapist and physiotherapist make my case with my application), then the HSE send me out a letter telling me that my PA hours have been sanctioned but that there is no funding for additional PA hours available so I am on a waiting list. So what do I do now?? Because other than building a time machine and going back 10 years to when I could do all these things myself I really cannot do anything. Are the HSE under the impression that I want to have this horrific degenerative neurological lifelong disability? Or A stranger to help me to get out of bed in the morning, or use the toilet, or get into bed at night?? Clearly they are. (This constant struggle takes all my energy and leaves me feeling upset stressed out hopeless frustrated and angry
I have needed a new wheelchair since 2015, I need to go to a specialised seating clinic because my muscle deterioration is causing my pelvis to drop and my upper body to slouch to one side. I have been on the waiting list for this clinic for over three years I finally got an appointment in July 2018 I had 2/3 follow-up appointments make sure everything I needed from a new wheelchair was being accommodated. I was told the new wheelchair was being ordered. By the end of September I had heard nothing from anyone so I made some phone calls and was told that I would have the chair by the end of October. The end of October came and went without me getting a new wheelchair the backrest of my current wheelchair literally started to fall apart and by the end of November I was in continuous back pain and for all those months my occupational therapist assured me my new wheelchair had been ordered and was on the way then finally in December 2018 I had an appointment to go to the seating clinic and collect my new wheelchair. It is now July 2019 and my back is still sore and aching. (This constant struggle takes all my energy and leaves me feeling upset stressed out hopeless frustrated and angry)
I am no longer able to transfer to the toilet on my own so I use a hoist, I need a portable hoist so I can use the toilet when I’m out of my house, I made my case I had my occupational therapist giving her professional opinion that I need a hoist to use the toilet safely, I was met with “there is a strict directive from HSE management there is no more funding for new equipment available”. And here I am again so what do I do now?? Because other than building a time machine and going back 10 years to when I could do all these things myself I really cannot do anything, obviously the HSE would be happier if I just never left my house, where I have a hoist, ever again. Are you happy this is the ‘inclusive’ society we are building in Ireland in 2019?? (This constant struggle takes all my energy and leaves me feeling upset stressed out hopeless frustrated and angry)
i could tell you about so many more incidents over the years in my dealings with the HSE but I just don’t have the energy, I have to ask are the HSE trying to kill my will to live? I think this must be a new policy to make life easier for them because this constant fighting and struggling with them just to have my basic human needs met is exhausting. I am not looking for anyone’s sympathy or pity I just want people to understand the constant battles that people with disabilities face daily just to live a life.