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
Tag: Postural Orthostatic Tachycardia Syndrome
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 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
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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.
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Pacing – when is the Boom worth the Bust?
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?
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The Rehab Saga: Goal Setting, Red Hot Chilli Pepper (Capsaicin) and Swimming
So I’m getting really close to complete my rehab stay and today was mostly about rounding up the programme and making sure I’m as prepared as possible before going out into the wide world to continue my life. I overslept this morning (I’m blaming the antihistamines) but I did get up early enough to go…Continue reading The Rehab Saga: Goal Setting, Red Hot Chilli Pepper (Capsaicin) and Swimming
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The Rehab Saga: Physio, friends, family and beer pong.
After struggling to wake up yesterday I was expecting to really struggle this morning, I was pleasantly surprised when I woke up at 7:15 and didn’t feel half bad! I hopped in the shower (and even washed my hair) before grabbing breakfast there were a couple of new faces on the ward this morning so…Continue reading The Rehab Saga: Physio, friends, family and beer pong.
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The Rehab Saga: Maintaining change, Physio/OT and a visit from Addz
Up bright and early this morning but I felt pretty sleepy (I’m blaming the added antihistamines) I did eventually drag myself out of bed and get dressed in time for the Stretch class. It was a pretty small group of us today so we chatted a bit but got the job done, the Therapy techs…Continue reading The Rehab Saga: Maintaining change, Physio/OT and a visit from Addz
