I'm The Retired Bridgeburner, and this is my new blog about all things chronic illness related. I aim to keep the complaining to a minimum and the awareness raising to a maximum.
For anyone who's interested, the moniker is a play on my medical issues and also a nod towards the superb Malazan Book of the Fallen, an epic fantasy series written by New York Times bestselling author Steven Erikson.
So, about me? I'm 23 and up to being 21 was a pretty healthy young woman, something I took (like most people) almost entirely for granted. Summer 2011 saw me initially come down with bowel problems and unexplained weight loss. After a change in doctors surgery (the previous one believing nothing but Irritable Bowel Syndrome was possible) I was sent to Gastroenterology. After a colonoscopy, gastroscopy and pill endoscopy later in Spring 2012 these problems was attributed to "functional bowel issues" and I was left pretty much to fend for myself. During this time however problems started to develop in other parts of my body.
I began to have what appeared to be recurrent water infections - or just one very persistent one that five lots of increasingly strong antibiotics couldn't touch. Through a friend of a friend I discovered the condition Interstitial Cystitis and further reading proved I ticked virtually every box. I was eventually referred to Urology who confirmed the diagnosis inside five minutes. I count myself lucky - it's relatively mild and taking Amitriptyline keeps it under control aside from the occasional inconvenient flare up. I do have slight amounts of stress incontinence (sneezing is my body's particular favourite mechanism) but nothing too major thankfully.
Whilst awaiting my Urology referral the muscle and joint aches and weakness I am now used to began to make their presence felt. The perpetual tiredness became more pronounced and my memory and concentration began to suffer. An alarming tendency to feel pain at the slightest touch surfaced, and I found myself suddenly hugely sensitive to sudden noise and any perceived lack of space around me.
Just before Christmas 2012 I saw a new GP (entirely by accident, which proved to be rather fortuitous) who seized on the muscle and joint problems and asked if I would be happy with her doing the pressure point test I'm sure fellow chronic pain sufferers will be aware of. After having me nearly bouncing off the walls with pain, she confirmed the diagnosis of Fibromyalgia. Upon reading through my records she attributed the ongoing bowel issues to being one of the peripheral effects of the overall condition and assured me that whilst I would never be cured (save for the possibility of leaps in current medical knowledge in my lifetime) I could successfully achieve some level of management.
I'm sure others will understand the overwhelming sense of relief which accompanies final diagnosis. Finally, you know you're not imagining anything. Finally you know you aren't going mad.
Finally, I had answers.
Currently, I'm in something of a better place. I quit my job at the end of January 2013 and moved in with my partner to achieve a more stable living environment and also to reduce the travelling. I had been looking for a job to relocate with for nearly a year, but we very definitely needed a swifter solution. Previously we made 130 mile round trips each weekend to see one another, and this inevitably took its toll on my health.
I intend for this blog to be a place of raising awareness and generally shedding light on the poorly understood world of the chronically ill.
For now, here are some links for you all to look at (EDIT: Please note these links and more are now available on The Warrens tab, my links page):
The Spoon Theory by Christine Miserandino, a wonderful way to explain chronic illness and its effect on day to day life (and an explanation of all the "spoons" references we make!): http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
FMA UK, the UK's national Fibromyalgia charity: http://www.fibromyalgia-associationuk.org/
The IC Network, an Interstitial Cystitis information hub with an extremely comprehensive food sensitivity list: http://www.ic-network.com/
Chronic Illness Cat, a Tumblr blog offering a humorous take on the quirks and travails of being a Spoony: http://chronicillnesscat.tumblr.com/