I WILL WRITE A NUMBER OF EMERGENCY ON PLANET EARTH BLOGS THROUGHOUT THE TORY SPONSORED CORONAVIRUS CRISIS.
What follows is a random collection of thoughts from a human being trapped in 21st Century British society.
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I am absolutely over the moon that I have just employed another personal assistant, to join my small team of staff. After losing three valued employees in March, I have endured a very stressful period where I have had to stretch the limited resources that I have, to ensure I receive the 24/7 support I need.
It is such a relief to have found someone that I can respect, and receive the same respect back. I had been messaging agencies, as it seemed that I would never find the right individual to work with. Of course, only time will tell if I have struck gold, but the early signs are very encouraging.
There are still hours available, but not nearly as many as there were. I also have another member of staff due to return from maternity leave soon, so all of a sudden everything is looking rosy as I try to establish the 2:1 support that I really need to meet my physical and mental wellbeing needs.
A good example of why I need 2:! support came the other day, when my electric wheelchair started playing up. I called the engineers, who said that they would make an emergency call, as long as I was able to get out of the chair while they made adaptations. This is a standard request, made with my safety in mind. Unfortunately, I was unable to vacate my chair as I only had one support worker present. Hoisting me out of the chair and on to a bed or shower chair, is a two-person job in order to comply with health and safety regulations. I was subsequently forced to arrange an appointment for tomorrow afternoon, while hoping my chair does not give up the ghost in the meantime.
I will achieve my ultimate goal of independent living, supported by the Social Services and Wellbeing Act, in the end. It just might take me a little longer than expected, after starting my crusade ten years ago…
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Below, I have share a video that I found on YouTube, that quickly encapsulates Friedreich’s Ataxia. This is the progressive, genetic disease of the nervous system that I live with, so I thought you might be interested. It is only a short video, so I have also added a more complex video that explains all in a scientific manner. If you are interested then you may wish to watch this, but it even confused ME, so I don’t blame you if you don’t bother.
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