Syringomyelia Saturdays

Sophie’s Story

Sophie is 24 & is one of the many people I have met through online support groups for syringomyelia; Sophie describes herself as “lucky” in terms of the disease as she is fairly symptom free & hasn’t suffered much because of it. Despite this, I wanted to include Sophie’s story in the collection of stories I’ll be posting for the Syringomyelia Saturdays series because it shows how diverse syringomyelia can be.

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YALC 2017

YALC 2017My shoulders burn, my arms ache, my legs are shaky & I’m beyond tired… that can mean only one thing; Saturday was YALC! In this post I’m going to talk about the things I bought & the freebies I collected, as well as three of the authors I met – additionally, I’m going to discuss what it’s like to be disabled in London & also specifically whilst at YALC.

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Medical Mondays

Better You Magnesium Original Flakes

MagensiumA member of one of the syringomyelia Facebook pages that I’m a part of posted a few weeks ago, telling us all about a new bath product she had tried. Better You Magnesium Original Flakes claim to “aid in skin and bone health and relief from muscle stiffness and cramping” so I thought I would give them a go.

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Medical Mondays

My Neurological Fight

syringomyeliaI’m sure I’ll eventually use my blog to do rants about my various illnesses so I thought it would make sense to write a couple of pieces that briefly tell the different stories of what I’ve been through since I was 16! I’m not great at remembering dates but I’ll try to make it as accurate as possible.

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Syringomyelia 1, University 0

Last Monday was supposed to be my first day back at uni but it was a total and utter disaster. I was rationing my pain medication as I was low and ended up walking out of my first lecture of the new year in tears because my pain was so ridiculous. I left uni, obviously. On my way home I went to pick up my prescription but it was only half complete… And of course, they messed up my pain killers. I sat in the pharmacy for two hours hoping that the staff would be able to sort my prescription out and when I was told I’d have to wait until the next day I completely broke down, which lead to the staff ushering me out with as much discretion as they could – I could barely walk and instead of causing a scene by calling an ambulance they called me a taxi and sent me home. The second I got through the door my body gave up because of the pain and I just sat there thinking how ridiculous my life actually is.

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Vertigo, Could You Please Go

For the last Saturday, Sunday, Monday, Tuesday, Today five days I have been overwhelmed with vertigo and the other evil pixies that come with it.

The last few days I’ve not been able to sit up, lean against anything or lie flat on my back without feeling dizzy, sick and just a little disconnected. I’m sat up right now, this is the longest I’ve managed in the last few days and it won’t be long until I’m sick again. I’m shaking, achey and my vision is a little off.

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Shaving Is A Chronic Pain in the Ass

Shaving. That thing that 90% of the population HATE doing. But I can promise you, doing it when you’re broken is a whole new world of hate. I was in the shower, washing my hair yano ‘normal’ shower activities and when I bent down to start shaving my legs something hit me (probably a confused nerve sending a random message to the brain, but on this occasion that’s okay) – it really fkin hurts to shave your legs when you’re a #spoonie.

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