At first glance, and especially for people who read my blog regularly, this post will seem like a piece of unabashed promotion from a (slightly besotted) fangirl; and that’s fine – I’m not ashamed of this obsession, even if others believe I should be. But what is truly the driving force behind this post is an unexpected, and almost other-worldly, synchronicity that is literally guiding me through the unpleasantly complex maze of chronic illness.
This incredible piece of visual art is what I like to call a ‘day-maker’:
something that takes you out of yourself, gently removing you from the complicated intricacies of living and allows you to experience the wanton pleasures of being. And what I am about to say may sound incredibly selfish, but the anticipation of Liminal was the one thing that kept me holding on when my internal organs decided to detonate a bomb on the right side of my body.
When the 12-second trailer popped up on my Facebook feed last week, I half-jokingly said, “I’d better make sure I live until Monday!” The fact that it was to premiere the day after my birthday merely added to the excitement, as though I personally was getting an extra special gift (I know it is purely coincidental, but delusion can be so comforting…) So far 2016 has appeared to be a strange and oftentimes unpleasant year (it really does seem like David Bowie’s death triggered some sort of discomfiting cascade) so hearing some good news truly lifted my spirits: in all honesty, it filled me with glee.
Then came Friday….
I’m no stranger to waking up in pain, particularly the cyclical agony that comes with Endometriosis; but that Friday I felt as though I had fallen into the Hell-Mouth.
I’ve described before, in graphic detail, the basic machinations of an Endometriosis flare-up, so I’m not going to subject anyone who’s reading this to the full horror of what I underwent on that day; nonetheless, I think it is pertinent to describe the actual paroxysm that left such a huge crater in my weekend. Those of us for whom pain is a major component in our illnesses are often asked to describe what we’re feeling on a sliding scale of one to ten – one being ‘no pain at all’ and ten being ‘the worst pain you’ve ever felt’: going by that yardstick, my number would have hovered somewhere around the high teens.
It started, as these things often do, with a sensation that something had popped, torn, snapped or been poisoned (the poisoning reference often garners blank or confused stares, but I can find no other suitable metaphor – it feels as though something has been injected into a very specific area which leads to a rapid form of necrosis); that ‘uh-oh’ moment when you know you’re about to ripped from the relative safety of an after-shock straight into the epicentre of the earthquake. The early rumblings of what was to come had started in the wee hours, and I chose to ‘ride it out’ with a combination of taking strong painkillers, keeping myself as upright and still as possible and drinking plenty of fluids. I had planned to employ the same internal calming methods as the symptoms began to escalate at the more reasonable time of 10.30am: after all, no pain can last forever….
I made a valiant attempt to lie completely still but every now and again the Fibromyalgia (oh hey, buddy!) would cause a ripple of muscle twitches; a tiny event in the grand scheme of things, but more than enough to make me feel as though half my body was on fire. By the time my surface temperature started to plummet and my near-empty stomach unceremoniously emptied itself into the bathroom sink, there was little doubt that the internal bleeding was on the verge of sending me into shock.
Had this occurred at any other time I would have reacted in my usual laissez-faire way, telling myself that a lifetime is a lifetime, whether it lasts forty-five years or forty-five minutes. But this time, I had a very clear finish post to aim for; and to reach it I would need let go of my visceral aversion to the Emergency Room and call for external help.
Like many people with complex chronic illnesses, I know that being treated as an emergency case can be an ordeal of monumental proportions. There are so many procedures that have to be followed when all you really want is for the specialist-on-call to examine you and assess the situation within the parameters of the disorders that you have, rather than any disease that may be suspected. There are blood tests, blood pressure tests, X-Rays, so many questions and usually a medical history far too long and intricate to be conveyed to a triage doctor; and all of this is occurring when your mind is simply screaming “PAIN, STOP!”
This visit was no different: I was ninety-five percent sure that something around my right ovary had ruptured and knew that an ultrasound would probably prove me right. However, because of the areas of tenderness I exhibited during several examinations (my entire abdomen often feels as though it’s full of razorblades for around ten days of the month) they could not rule out Appendicitis: my elevated white blood cell count (a sign that my body was probably fighting an infection) and slight fever compounded the issue and solidified my status as an in-patient.
Eventually, after all of the discussions and X-Rays were completed, it was decided that I should be admitted under the care of the Gynaecology department: so, at around 8pm, with my veins filled with paracetamol, my brain floating on a bed of Entonox and an experience with with a Voltarol tablet that I’d rather not elaborate upon, I was finally wheeled off to get the ultrasound that I had known I’d needed hours before. What I was unaware of was that the final domino was about to fall.
…my case was considered complicated enough for the advice of a senior consultant to be sought
Internal scans can never be considered pleasant in any way shape or form, and this particular one seemed to be taking an absolute age. I gripped the hand of the nurse as the doctor placed interminable pressure on various parts of my pelvis whilst scrutinising the grainy image on the computer screen. Luckily (or unluckily, depending on your perspective) my case was considered complicated enough for the advice of a senior consultant to be sought. As soon as he stepped into the examination room and introduced himself, I felt a wave of relief gently rolling over me: this was no stranger – this was Dr. B, the one Gynaecologist, out of the dozens I’d met, that I had ever had any trust in.
The reason this is significant is because, after a less than stellar entanglement with a separate team of doctors, I had pleaded with one of the GPs in the group practice to refer me back to Dr. B, stating that he knew my case better than anyone else could ever hope to. Raising the issue of the financial burden I was placing on the NHS and the Practice in particular, she tried to goad me into continuing to be treated by the team that had caused me so much consternation: I refused the offer, deciding that ‘no care’ would be a darn sight better than ‘poor care’. I went from being a patient who was fully examined every six months to having no regimen at all for over two and a half years – and that personal neglect may well have continued if I hadn’t been so desperate to watch a four-minute video.
Yeah, I posted the link again. You can thank me later…
Those of us who suffer from chronic illnesses often exist, through no fault of our own, within a world of chaos. Fluctuating and sometimes contradictory symptoms, an almost continual dance of trial and error with various medications, treatments, and medical personnel all bundled up in the uncertainty of how our bodies are going to react day to day, moment to moment. For instance, I paced myself so carefully after being discharged on Saturday afternoon, but it did little to prevent me from crashing like a kamikaze pilot on Tuesday. What caused it; Friday’s trauma, standing in the post office for twenty minutes, the dreadful London weather? I don’t know – what I do know is that by 3pm I was no longer able to remain upright and on that day I did not have the ability to fight to stay awake. All plans had to be put aside, the fragile pieces of which to be collected at a later date.
To someone on the outside of the chronic illness experience, the events that I have described could be viewed as nothing more than a series of happenstances to which I am attributing way too much meaning. However, when the whirlwind is your life, anything that brings a clear order to the entropy will often feel like providence, whether it is or not – that those almost subconscious course corrections (like developing a strong admiration for someone whose life is so far removed from your own, for example…) are actually steering you towards the correct shore.
I know that there is a difference between correlation and causation and that not every coincidence is meaningful: but I cannot ignore the fact that, in this particular case, Rodney Mullen’s impeccable timing led me back to the assured expertise of the doctor whose care my GP had sought to deny me. And, once again, there is a lot of gratitude flowing in his direction.