Life can be tough. Sometimes people with disabilities/impairments have to make tough choices and the impact of society can make tough choices even tougher. Using mobility aids, pacing and pain management strategies often come with judgments and assumptions attached. Over the last few years, I’ve learnt a lot about myself and I feel like I’ve…Continue reading Disability life lessons – Who cares what society thinks?
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?
Ok so just a quick post. These are little reviews of my most frequently used or most useful apps. Some of these apps are aimed at anyone and everyone but others are more for people with illnesses or disabilities. If you see something totally irrelevant then please just keep scrolling on to the next one.…Continue reading My Top Adaptive Life Apps
Hello folks. This is a sponsored review* of a nifty new site called MedNexus. This is a medical search engine designed for patients. I am all for this since I firmly believe we should all be our own health advocates, I actively encourage people to be well-informed about their own health conditions but not all…Continue reading MedNexus.io – Review
So this is a new topic for me but I think it’s probably going to help a lot of people. Communication is something we all do, usually without much thought but there are some times when communication can be a bit harder. The most obvious types of communication are talking and listening but actually, a…Continue reading Non-verbal communication
I’m often asked how I’ve managed to get the most out of healthcare appointments, there is no quick answer so I’ve decided to write a longer one. As always, this post is written from the dual perspective of expert patient and healthcare professional. Much of this post is written from my own personal experience. During…Continue reading Therapeutic Relationships – Getting the most from Healthcare
It’s not often I write about how much disability can suck. I do my very best to stay positive. I write useful posts with coping strategies. I think I do a pretty good job when it comes to living a fun and meaningful life but there are some times when I genuinely feel like my…Continue reading Sleep deprived ramblings -Why I use a wheelchair & Life with a variable disability
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
This one is a requested post and the first time I’ve co-written a post! Since this post is about maintaining healthy relationships I’ve invited my partner to share his side of the story too. I will apologise now for elevated levels of sarcasm and any unnecessary use of puns featured in this blog post. Just…Continue reading Relationships, chronic illness & intimacy.
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 experience a…Continue reading Temperature Regulation Hints and Tips