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“First, Do No Harm…”

A couple of weeks ago I wrote this post, detailing the trouble I was having with the only mode of treatment I was being offered (there will be a post next week about re-discovering a privately funded treatment that had been right under my nose, and why I was right to be suspicious of the program); the psychologist that I was dealing with kept trying to draw me back into the schedule that I had explicitly told him I wanted to be extricated from.  As I had explained the link between Ice Hockey and an alleviation of my symptoms at an earlier meeting, he kept trying to use ‘sports based language’ as a psychological ‘trick’ to get me to relax into his way of thinking.  What he didn’t know, however, is that my sister is a psychology major, so I’ve learned a lot about human behaviour and manipulation over the years. A non-sports fan, and more importantly, a non-Hockey fan trying to ‘match and mirror’ what he thought my language would be just made me even angrier – it was a blatant attempt at control, and further proof that I could not place my trust in him. This is the email I replied with. Continue reading ““First, Do No Harm…””

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Who’s A Burden?

I initially had no plans to wade into the ‘Me Before You’ movie debate – I felt as though it wasn’t my right to add my own two cents into the pot as the only mobility aid I use is a crutch, and even then it’s used infrequently. Plus, it would have meant watching what appears to be a truly awful ‘romance’ film – it’s the one genre I cannot stomach… Continue reading “Who’s A Burden?”

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This Coffee Was Brewed In The Twilight Zone

If we were having coffee I would tell you that I have a lot of unusual and extremely vivid dreams. I would normally just share them with the people around me, but because this one occurred at the weekend, I thought I would allow it to be disseminated a little further.

Before I start I must confess that I do read and watch a helluva lot of science-fiction; so make of this what you will… Continue reading “This Coffee Was Brewed In The Twilight Zone”

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A Mile In Our Shoes

Like a lot of people whose disabilities are invisible, casual ableism is not something that sits permanently on my radar: I generally don’t have to think about wheelchair ramps or the absence of verbal prompts on a city bus. What I do have to concerns myself with is someone shaving parmesan onto my gluten free penne at a restaurant (this actually happened) because they don’t realise that what they may see as a dietary choice is really something that is keeping me out of the hospital.  So when I first read a rather odd hit piece in a national newspaper last year, rubbishing a device that has huge potential for personalised health care, I didn’t understand at the time that the anger I was feeling towards the author was because she was clearly dismissing the experiences of so many of us whose bodies don’t run ‘like clockwork’. Continue reading “A Mile In Our Shoes”

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The Patient By Gaslight

Due to an interesting encounter with another GP, I made a second Subject Access Request in order to actually see the values of cortisol in my blood, plus whatever statements the previous GP had made about my condition.  Gentle reminders usually have to follow the initial request, and this approach has worked in the past, but even with the nudges, all I was getting was silence. As the blood results were my real concern I decided to try and get that information in isolation from the rest of the records: and getting my tetanus booster provided the perfect opportunity.  Continue reading “The Patient By Gaslight”