This time last weekend, we were on a little break visiting my eldest daughter, Victoria and her partner James. We met James’s family who are my benefactors and bought me the power wheelchair which I use at home. I love Victoria and James’s flat. It is on the ground floor and, with the exception of two steps to the front door, which would be an issue if I lived there, there is so much space to move around. It is clean, light, bright and airy. They have a tiny yard from their guest room and an en-suite in their bedroom. They kindly gave up their room so that we were comfortable and they slept on their sofa bed. I always feel as if I am a burden on everyone now that I need to be cared for to some extent and last weekend that is how I felt. I know how tiring being a carer is, after all, as a Learning Support Assistant, we are carers for our learners and I only was with the learners a few hours a day and I got tired.
We went to the Natural History Museum on Sunday and London Zoo on Monday. I was also down there to attend a MNDA Parliamentary Reception on Tuesday with Victoria which I found very emotional, partly because it brought it home to me that since the diagnosis of MND six months ago, it is still raw and attending the reception means that this is real. I am not going to wake up and find the last six months have all been a bad dream. I wish it were.
I wrote on the journey down to London and Sidcup about how I feel about MND and I hate it with every fibre in my body. I just wish with the advances in science and medicine that a cure can be found. This is even more poignant when I learned on Thursday that MND has resulted in the gentleman I have been chatting to on messenger losing his Dad to the disease following the diagnosis in August and it is heartbreaking to know that MND claims lives all too quickly and, in some cases, prematurely.
I digress, the visits to the Natural History Museum and London Zoo were brilliant. I loved every minute although I found the rush hour in London quite stressful. The Parliamentary Reception which focused on the financial impact of MND on sufferers and their families was an emotional event. One man has had to appeal to the Department of Work and Pensions (DWP) to receive his Personal Independence Payments (PIP) so many times and each time they reassessed him, his score was lower which meant that, in their opinion, he was getting better. MND doesn’t work like that, there is no cure.
The patron of the charity, Charlotte Hawkins from Good Morning Britain and Strictly Come Dancing attended and gave a moving speech about her involvement with the charity. Her Dad battled MND for 4 years before losing his battle in 2015 before her daughter was born. She was very emotional during parts of the speech and I just cried an awful lot. Victoria and me had our photo taken with her and she signed my Diary for me. I hope there is some progress and that the DWP stop the reassessment of sufferers with MND because we have enough pressure to deal just battling the disease without the added stress of proving we are terminally ill.
That aside, apart from one near fatal choking incident on the Monday morning, all in all, it was a great few days in London and Sidcup and I want to thank James, Victoria and James’s family for making us feel so welcome and very much at home, relaxed and stress free.