Well here I am on day two of the health activist writers challenge. I’m sitting supported upright to try to reduce some back pain I’ve been having and as a result my dysautonomia is trying to make me pass out! if it’s not one thing, it’s another, eh?!
I am one of many health bloggers / activists out here in the internet. I write about living life with (and despite) my conditions. But I also gather information on the conditions because they are so complex and specialist that many medical practitioners are simply not aware of them. So for us patients to learn about our own conditions is very empowering – it enables self advocacy so that we can participate in health discussions with practitioners, and even initiate practitioner awareness through the sharing of our acquired knowledge and understanding. Essentially, we help ourselves through learning about our own conditions and, unsurprisingly, many of us wish to help others going through the same process because we know what it’s like, we’ve been there and we want to help, x
I have had CRPS for 13+ years as a result of a minor non-invasive injury. CRPS is an intractable pain condition that is one of the most painful conditions known to medical science and which has spread throughout my body. The condition is not ‘simply’ a pain condition because it also involves the autoimmune system, the autonomic- and central- nervous systems as well as problematic rewiring in the brain.
Having multiple faulty systems has resulted in my array of additional health issues including permanent nausea, varying levels of continuous near-fainting, continuous ‘fight or flight’ issues, ‘brain fog’, comprehension issues, processing problems, varying levels of difficulty with word recall, faulty memory, arrythmia, IBS, body temperature dysregulation, teeth pain, jaw problems and jaw pain, migraines, fatigue, insomnia, ear pain, light sensitivity, noise sensitivity, increased sense of smell, overly sensitive taste issues resulting in difficulties eating various food types, a gagging response when eating certain food textures, disrupted vision, hand tremors, occasional leg tremors, eye tremors, other muscle twitches and spasms, dystonia…. I could go on, but I might send you to sleep! 😉
Me with brain fog!
So here in this weblog I talk about living with these things – living despite these things – but I also focus strongly on gathering information about these conditions so that my fellow patients can read a lot of information in one place instead of each one of us having to search eeeeverything.
In particular, my ‘What is CRPS?‘ page brings together a large amount of information with a lot of references to peer-reviewed research journals. So my fellow patients and their doctors can see where the information came from and how up-to-date it is. This last point is crucial as the condition is so complex and multi specialist that research is always moving the field forward and so keeping up-to-date with current knowledge is imperative. So I scour the research links and regularly add information to my ‘What is..’ page. (There will be more additions in the not too distant future).
Similarly I also have a ‘What is Dysautonomia?‘ page. There is more accurate and comprehensive information on Dysautonomia available on the Internet than there is on CRPS, but once again this is about drawing information together for fellow patients to find in one place. Unlike the CRPS page the references tend to be for reliable Internet sources because research journal papers tend to focus on really specific aspects and subtypes of dysautonomia, whereas I present information about the condition as a whole to present a broader foundation of information, with web links at the bottom of the page for patients to follow if they wish to know more on a certain topic.
My ‘Useful Links‘ page will continue to be added to over time. It includes key printable research papers to show to doctors, links to helpful organisation’s websites, and various other bits and bobs which can be very useful to patients with these conditions.
Of course, this is also a blog. I write about experiences with my health conditions, with doctors, about doing things despite the auto gnome; about how it feels, what it does to us, my terribly British tea-drinking habit 😉 , how we can still kick some arse, and oodles more!
Some handy blog posts for fellow patients may include:
The weirdest thing about my health… – the problem with health variability
Tick…Tick…Tick…Tick…SPOON! – referring to Christine Miserando’s great analogy for explaining to others why we can only do so much in one day
The Hungry Bear that Lurks in my Coat-Cupboard! – talking through issues that cause me confusion in conversations, inadvertent problems with others, and a tendency to nearly pass out! (re ‘fight or flight’ and processing)
This Too Shall Pass – on using distraction techniques, facing my fear in different ways and working through
Experiencing cognitive change – and also the confusion, and even loss of loved ones, that it can have a hand in
What I take with me to my doctors appointments – how to get your doctors to listen and to think along the right lines to be helpful to you
McGill Pain Index, CRPS and Fibromyalgia – Pain level comparisons to demonstrate the high level of CRPS pain (can be helpful for those around us to see)
Always get copies of your hospital notes
Of course it may well be that the daft posts of sillness are of more use to my fellow patients, really…. never underestimate the power of a nice cup of tea and a laugh 😉
Mmmmm..teeeaaa
Much love from me, and I’m cheering on all of my fellow patients and fellow Health Activists out there <waves pom poms enthusiastically> 😀
x
Elle and the Auto Gnome 
I love your work and this is an excellent summary. Thanks for the links to those key posts, too.
Thanks honey, an overview from time to time is probably quite handy. As the weblog grows I want to make sure everything is still coherently set out and searchable, xx
Thanks for this post – I’m newly diagnosed with CRPS and can relate a lot. The links and posts are going to come in very handy I can tell! xx