Disability life lessons – Who cares what society thinks?

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?

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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?

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Therapeutic Relationships

Therapeutic Relationships – Getting the most from Healthcare

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

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Sleep deprived ramblings -Why I use a wheelchair & Life with a variable disability

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

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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

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Relationships, chronic illness & intimacy.

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.

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Temperature Regulation

Temperature Regulation Hints and Tips

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

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