Category: Health & Disability. EDS & PoTS

Temperature Regulation

Temperature Regulation Hints and Tips

JBOTCoping Strategies

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

Types of Splinting and Bracing for Hypermobility Syndromes.

JBOTEveryday Aids & Lifestyle Adaptations

There are many different types of splints for different uses. When deciding what will suit you there are lots of  points to consider. So here goes, my run down on different methods of supporting your joints. Neoprene or  Elastic Supports These are often fairly basic lightly shaped stretchy sleeves you simply pull on, commonly available for…Continue reading Types of Splinting and Bracing for Hypermobility Syndromes.

Tinted Lenses – Visual Stress, Migraines and more

JBOTAids & Equipment

I’ve been wearing tinted glasses since I was 12 years old. I started out with dark green but very quickly moved to orange. I’ve had a fair few pairs of orange tints. I’m used to them, I think I look a little odd without tinted glasses now! I just see them as part of myself…Continue reading Tinted Lenses – Visual Stress, Migraines and more

Pacing

Pacing – when is the Boom worth the Bust?

JBOTCoping Strategies

Symptom management is a really important part of living well with a chronic health condition. For symptoms like fatigue and pain, Pacing is an essential skill to learn. There is no easy fix for long-term health conditions but there are a lot of little fixes that can help. To make the most of these little…Continue reading Pacing – when is the Boom worth the Bust?

When is the right time to use mobility aids?

JBOTAids & Equipment

This is a topic I’ve discussed a lot over the years since my health started to decline due to Ehlers Danlos. There is a lot of stigma associated with mobility aids, I’m often questioned why I use a wheelchair when I can walk or why I use crutches when I have a wheelchair. The reasons…Continue reading When is the right time to use mobility aids?

Diagnosis pro’s and con’s

JBOTCoping Strategies

I’ve heard a lot of chat about how people feel when they receive a diagnosis, so I’ve decided to share my ramblings on the topic. There tend to be 3 distinct trains of thought upon receiving a diagnosis. 1. I’ve got a diagnosis this is good. 2. I’ve got a diagnosis this is bad. 3.…Continue reading Diagnosis pro’s and con’s

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

JBOTEveryday Aids & Lifestyle Adaptations

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)