Living My Life Slowly

I felt my energy ebbing away and knew that I was destined to experience yet another unproductive day. I’d had so many of those recently; and despite the fact that most people understand that the very substance of the term chronic means I will never fully recover, I still get asked if and when I will be ‘better’.

Continue reading “Living My Life Slowly”

Bread, Barley and Blood

I’m not writing this for your sympathy: I have no need, or desire, to receive a plethora of ‘get well soon’ messages (not to be ungrateful – it’s just a little beside the point…)  I’m writing this for the people who, like myself, cannot use the word ‘allergy’, but know all too well that certain substances are detrimental to their health. I’m also writing this for the people that goad them.  The people that claim that an absence of an EpiPen is a sign that we are merely fussy eaters: that the substances we put into our bodies have zero effect on the illnesses we suffer from.  The ones who believe that if a reaction isn’t immediate and deadly that the ‘sensitivity’ is fake.  This horror show is for you.

WARNING: GRAPHIC DESCRIPTIONS OF THE MENSTRUAL CYCLE ARE CONTAINED IN THIS POST. Continue reading “Bread, Barley and Blood”

3 People The Chronically Sick Always Meet

We’ve all met them. Those allies who, either deliberately or unconsciously, make you feel so much worse about yourself, about the way you choose to live, and how you deal with your own challenges. These are the people who, when you’re at your most vulnerable, make you feel selfish, ill-informed, and downright idiotic: and their attempts to ‘help’ you are about as beneficial as rubbing sand into your eyes.  Continue reading “3 People The Chronically Sick Always Meet”

Don’t Agitate The Bomb!

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!”

Is This The Reason Why Endometriosis Treatments Are So Ineffective?

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?”

Holding Pattern…

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…”

What I Lost In The Fire

There are two exhibitions coming up that I really want to see.  Both of them are in London museums, and are easily reachable by public transport.  The logistics of planning such an innocuous day out should be straightforward: it’s currently more akin to planning an overseas trip for ten people who barely know each other.  Going on the weekend will guarantee me a chaperone, but it will also increase, tenfold, the number of moving obstacles that my dystaxia will have to deal with.  Choosing a quiet midweek slot will reduce the physical exertion (movements won’t have to be so controlled: more places to sit and rest) but I’ll be less likely to secure the company of someone who can help me if, or when, my body starts to shut down.  I’ve finally realised that this is my new reality.  Denial has turned to grief. Continue reading “What I Lost In The Fire”