Tag: Endometriosis

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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”

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A Fight Against Illness, Or A Battle For Wellness?

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?”

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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!”

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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?”

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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…”

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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”

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6 Tips For Dealing With A Difficult Doctor

If you’ve read my previous posts you will know that it took getting a confidence boost from a pro Skateboarder for me to have the final showdown with my GP, that eventually led to him being proved wrong about what was happening inside my body.  What that last consultation showed, though, was that I actually had a very well stocked arsenal but I was using it both incorrectly and inefficiently.  With that in mind, here is a rundown of the tools you can use when dealing with an obstinate medical professional.  Hopefully, these will eliminate the need to be struck by inspiration.  Don’t get me wrong, inspiration is wonderful (and I will forever be grateful to Rodney Mullen….) but it’s not always as forthcoming or guaranteed. Continue reading “6 Tips For Dealing With A Difficult Doctor”

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The Uphill Struggle For A Diagnosis Part 2

Read Part 1 here

I adore Rodney Mullen.  For those of you who don’t recognise the name, he is the Godfather of modern street skating. Pretty much all of those impossible looking tricks you see people doing (the ones that look like pure wizardry) were invented by him.  Now, I’m not a skateboarder myself, but at that particular time I was going through a Roller Derby ‘fresh meat’ training program (the Derby thing will get it’s own post in good time…) and I was finding that Mullen’s TED talk ‘On Getting Up Again’ was really helping me deal with getting used to hitting the floor so often.  At least, that’s what I told myself – in truth, I just really like hearing him talk. Continue reading “The Uphill Struggle For A Diagnosis Part 2”

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What Does Self Care Actually Look Like?

 

One afternoon in December 2012, I heard somebody thumping on my front door.  The building is not the easiest to get into, so I assumed it was one of my neighbours in distress. I grabbed my keys, and opened the door to spot, not a panicked neighbour but an innocuous, yet unfamiliar looking young woman.

“Are you Jacqueline?” She asked.

“Yes” I replied; curiosity piqued.

“I’m from the Doctor’s Surgery. We’ve been trying to call you.  You need to get a blood transfusion ASAP.” She handed me a referral letter to take to the hospital.

Allow me to add some perspective to that conversation.  I have Endometriosis, an inflammatory illness that causes womb tissue to grow in all manner of unwelcome places, which then proceeds to create a tonne of internal bleeding.  Continue reading “What Does Self Care Actually Look Like?”