In this online age, access to medical information is faster and simpler than ever before. The ease with which patients can search for symptoms, diagnoses and treatments has plays a big role in the the e-patient 1 movement. About 5% of all internet searches are about medical information 2 . Support groups, patient advocacy groups…Continue reading Dr Google & The e-Patient Experince
Suffolk Wildlife Trusts’ Lackford Lakes is 323 acres of wildlife paradise just outside Bury St Edmunds. The reserve features a mix of lakes, reed beds, meadows and woodland. There are 6km of trails and 9 bird hides. Lackford Lakes visitor centre is open from 10am till 5pm Tuesday till Saturday. The reserve is down a…Continue reading SWT Lackford Lakes Access Review
It’s that time of year again, May is EDS Awareness Month. For the whole of May I’ll be raising awareness of Ehlers Danlos Syndromes. For those of you who don’t know what it is please head on over to my EDS info page. For the last few years I’ve offered to share info on any…Continue reading EDS Awareness Month – Open questions, ask me anything! #EDSAwarenessMonth
Cley Marshes is a Nature reserve in Norfolk looked after by the Norfolk Wildlife Trust (NWT). The reserve it’s self is a good mix of shingle beach and saline lagoons, marshland and reed beds complete with a number of wildlife hides and viewpoints. I first visited in January and I went there again last week.…Continue reading Cley Marshes Accessibility Review
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?
Planning a holiday or a day out should be exciting but for many people with variable illnesses or disabilities it can be pretty daunting. To be honest, planning anything can be pretty daunting. I’ve lost count of the number of events I’ve called off at the last-minute. For any new visitors to my blog, I…Continue reading Travel with a variable health condition
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?
Living with Ehlers Danlos or any of the other hypermobility syndromes does mean you are going to get injuries at some point. That’s not me being negative, it’s the truth. Living with these disorders is risky! Simply rolling over in bed or putting on socks can lead to ridiculous injuries. I do my best to…Continue reading Hypermobility Syndromes – When to seek medical help?
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
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