Chronic Pain – What does it actually feel like?

This is something I’ve been meaning to write about for a long time. While doing my dissertation before christmas I repeatedly read that most newly qualified healthcare professionals do not have a modern understanding of pain. I reviewed 9 articles for my dissertation, one common theme was the negative patient experience. Patients not feeling validated,…Continue reading Chronic Pain – What does it actually feel like?

Surviving a General Anaesthetic with H-EDS & PoTS

So as many of my friends will know I was in hospital yesterday to have a tooth extracted under general anaesthetic. It couldn’t have gone better really! I’ve spoken to a few people who have requested I jot down some of the ways the surgical team and I managed my ‘complex issues’ throughout the surgery…Continue reading Surviving a General Anaesthetic with H-EDS & PoTS

Temperature Regulation

Temperature Regulation Hints and Tips

Introduction Temperature Regulation is supposed to happen naturally. Unfortunately, many people with complex health conditions find that this simply doesn’t work. As many of you may know I have Postural Orthostatic Tachycardia Syndrome (PoTS). Basically, because of my Ehlers Danlos my autonomic system is a bit wonky. I struggle to adjust to postural changes and…Continue reading Temperature Regulation Hints and Tips

Yoga with Hypermobility Syndromes – Safe Stretching

Please remember throughout this post, I am not a yoga instructor, I am not a physiotherapist. This is all info I’ve learned through personal experiences with yoga and Ehlers Danlos. I recommend checking with your Dr or physio if you’re unsure about anything.

The Rehab Saga: 2nd Weekend Home

So saturday was a total write off, the allergic reaction drove me MAD. So so Itchy… I felt pretty toxic and lethargic all day and I don’t think its the double dose of antihistamines… I was starting to see some improvement with the ear infection tho so thats good. I spent most of the day…Continue reading The Rehab Saga: 2nd Weekend Home

The Rehab Saga: End of week 2

So after I finished thursday nights blog post I noticed something peculiar. I’d come out in a rash. It would seem I’m allergic to my anti-fungal medication. By bed time the rash covered my arms, legs and tummy. I got one of the nurses to bleep the Dr, she said to just stop taking the…Continue reading The Rehab Saga: End of week 2

The Rehab Saga: Weekend Goals, Nutrition and extra Physio.

So after I finished my blog post yesterday I was planning on having an early night. That didn’t happen. I layed down for a while and read my kindle (no hope of sleeping with the lights on and everyone talking) I’ve been struggling to sleep here anyway so I was easily irritated by lights or…Continue reading The Rehab Saga: Weekend Goals, Nutrition and extra Physio.

The Rehab Saga: The Beginning of Week 2

First day back after the weekend and up bright and early this morning. Everyone loves a 5:30am start right? … Our first session of the day was a review of our weekends. We took it in turn to discuss the progress we’d made with our goals and what we got up to at the weekend.…Continue reading The Rehab Saga: The Beginning of Week 2

Corset wearing for chronic back pain – Focus on Hypermobility (Ehlers Danlos Syndrome)

As part of the series on Splinting for Hypermobility Syndromes, this post will specifically cover corsets. Before we start I have to say I’m not a medical professional and I’m not a corset expert, this is all from my personal experience and before you take any advice from my blog I’d recommend reading around the…Continue reading Corset wearing for chronic back pain – Focus on Hypermobility (Ehlers Danlos Syndrome)

13th day in rehab

Fairly relaxed day today, I had a bit of a layin then got myself up and dressed. Physio man came to see me and I was introduced to the 3rd physio on the team. She seemed a little more hesitant about the EDS risks during physio than the other two but I gave her my…Continue reading 13th day in rehab