• Electric Will

Friday 25th September 2020 blog



Haven't blogged since August 1st, after some important family issues we have been having and mentally haven't had the energy to write anything. Also had to lower Citalopram dosage cause it was affecting my brain in a weird way. This has taken me a few weeks to get used to to a lower dosage. Woke up with a migraine this morning, probably with not eating much yesterday. I have these days where I'm not very hungry. It's been like it since I had the spine surgery back 2000. It can be very frustrating when people don't believe how hard it is for me to eat sometimes. I can put up with most things with my condition. But it's eating that give's me the most trouble.


On the 6th October I go for my yearly heart check up at the hospital, I'm more scared about getting covid when I go to this apointment. So I will wear PPE, a face shield that one of the carers got for me, a face mask over my mouth and wear bipap that has a filter. Hopefully will be getting a month piece ventilator next few few weeks, this will mean not having to wear a mask and instead have a straw to breath air in when I need it, like photo below.




It's coming up to the 20th anniversary of my spinal fusion surgery on October 2nd. Around the same time as the UK fuel protests and 4 months before the foot-and-month out break. Can't believe this was 20 years ago,


I have only recently had the confidence in the last 6 months to talk about these things. I also now have someone I trust to talk to now, that helps with my mental health and the loneliness so much. It Can feel very lonely at times when people don't understand how hard Duchenne does affect me. Adults with Duchenne tend to be forgotten about, although this is slowly changing.




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