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…”
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”
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”
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”
A lovely woman I used to work with saw me wince as I tried to close a door. She asked all the usual, polite questions – was I okay, had I been injured – to which I replied that my shoulder was just inflamed, as all my joints were wont to do. No big deal; I was coping. A few more delicately presented but probing enquiries led me to explain that I had pretty much given up on getting any help from my GP: Osteopathy, yoga, and the Endometriosis diet were holding my body together, despite all the pain. She then told how all of her mother’s symptoms were dismissed as being related to old age, so she decided to keep a pain diary. Lo and behold, a pattern emerged, and her doctor could no longer continue to ignore Continue reading “The Uphill Struggle For A Diagnosis Part 1”
Even someone who has been living with illness for a significant amount of time may discover that a person close to them has never truly understood what daily living feels like for the one who’s suffering. Continue reading What’s the deal with all the spoons?
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?”