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
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
For many people around the world, regular physiotherapy is an accepted part of life. This doesn’t just go for chronic illnesses or long-term disabilities either. Plenty of people get short-term physio for acute injuries or a little physio input as they get older and less mobile. Simply needing physiotherapy doesn’t mean you’ll find it easy…Continue reading An alternative approach to Physiotherapy
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
Hello again and Happy New Year!! Sorry for the lack of posting lately! This will be the first of my post-rehab updates having completed the 3 week pain management course at RNOH Stanmore. If you haven’t read about my adventured there then please check the posts starting with ‘The Rehab Saga’.
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
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.
This is the start of my last week its also the last of my 5:30am starts! The drive up took an hour longer than normal this morning so I was feeling pretty rubbish by the time we finally arrive, (kinda desperate for the loo too!) My first order of business after un-pacing was to request…Continue reading The Rehab Saga: weekend recap and balance training