If we were having coffee, I would tell you that… Continue reading “Weekend Coffee Share”
There is often a vast amount of war-related language utilised when we, generally, speak about illness – chronic or otherwise. We fight for cures, battle our symptoms and add the word ‘warrior’ as a form of a suffix to the nouns that describe that which ails us. So far, so understandable – living a life like Sisyphus is not easy. Sisyphus, however, had no choice. To refuse to push that boulder up the hill would have incurred the wrath of the Gods. You may be thinking that illness isn’t a choice either – that is correct – but how we respond and deal with said illnesses, is. We can look at that giant rock and say “no, not today”. So why is it that even in support communities that treating ourselves with the kindness we deserve often considered to be a sign of surrendering to disease? Continue reading “A Fight Against Illness, Or A Battle For Wellness?”
Well, one Zombie. Me.
I’ve been bedridden for three days, begging for a swift and merciful end: but, for reasons unknown to me, I am still here, and I am still in agony. Continue reading “Warning: This Post Contains Zombies!”
Fibromyalgia is a complicated and challenging syndrome, and living with it is something that I’m having to learn through a fair amount of trial and error. There are things that I thought, for years, were my body’s own ‘quirks’, that turned out to be quite well-known symptoms; but, simultaneously, it appears that every sufferer is a unique case. This poses a very obvious problem for patients, who will have to learn what their bodies are doing, and why they’re doing it: but it also poses a problem for physicians as a treatment that’s good for the Goose could actually be disastrous for the Gander. Initially, I believed this was why, after my initial diagnosis, I was immediately discharged from the Rheumatology clinic and left to my own devices. (I wasn’t exactly thrown to the wolves; I was put on a waiting list for a pain clinic assessment at the end of last year, but there’s no guarantee that they will accept me as a patient.) On the other hand, being left in treatment limbo may have less to do with the clinician who diagnosed me and more to do with the findings of more and more research. Rheumatology is a muscular-skeletal and autoimmune speciality, but a vast amount of evidence suggests that Fibromyalgia is a neurological condition: it really is all in our heads, but not in the way some overly dismissive people would have us believe. And, most importantly, it gives me a finer explanation as to why watching Ice Hockey sends me into temporary remission. Allow me to expand a little on that last sentence…
Interpersonal relationships can be difficult enough to navigate, at the best of times; add intimacy into the mix and it becomes rather like placing tiny bits of foil into a microwave oven – you know that the volatility will become evident, but whether the appliance will survive the onslaught is anybody’s guess. In that light, adding an illness, or serious accident to those tiny metallic flames can be like finding an unexploded bomb in your basement: everyone was getting along fine in ignorance of its presence, but now its visible and the existential threat is very real. You can tiptoe around it, you can diffuse it, you can even try to ignore it – but the one thing you cannot, and should not do is agitate it. Continue reading “Don’t Agitate The Bomb!”
We’re heading towards Endometriosis Awareness Week, and my original plan for this post was a ‘listicle’ outlining some of the prevailing myths around this debilitating illness. The first ‘myth’ I was planning to bust was to be what I perceived as confusion surrounding the diagnostic tools that are currently in use. I was constantly hearing from other sufferers that the only definitive way to diagnosed this illness was via laprascopic surgery. Nonetheless, my diagnosis was first floated after an abdominal ultrasound (the type used to view a foetus) and every last one of my adhesions was clearly visible on my MRI. In fact, the MRI showed more than the surgeons had been able to see during my various procedures.
I began to wonder if this was due to some kind of cultural disparity between the United Kingdom and the United Sates. It does take an age to get diagnosed in both countries but British women fair a little better, waiting, on average, eight years for the condition to be spotted in comparison to the twelve years that American women face. I believed that maybe the UK was simply more likely to use imaging tools, initially; moving on to surgery if the symptoms persisted despite the scans coming back clear. While researching the reason for what I believed was a state of wildly differing diagnostic methods, I stumbled upon a medical paper (The Endometriosis Syndromes: a clinical classification in the presence of etiological confusion and therapeutic anarchy), written in 2003, by Professor Ray Garry. Reading this paper I came to understand why those different approaches exist. Continue reading “Is This The Reason Why Endometriosis Treatments Are So Ineffective?”
I wanted to make a brief statement about the term ‘flare-up’. It’s so much more than an increase in pain or symptoms; regardless of how manifold that increase is. It’s more akin to getting caught in the worst hurricane to ever hit the Earth, and trying, with all your might, to hold on to at least one thing that seems as though it will stay rooted to the ground for the duration. Continue reading “Holding Pattern…”