Look Before You Leap

Desperation led me to make a very poor decision about my own treatment.

As I’ve mentioned before, the only treatment I was offered after my fibromyalgia diagnosis was the pain clinic. Within that very long and complicated set-up was the opportunity to take part in a separate study to test the effectiveness of long distance treatment. As I had waited five months for the pain clinic assessment alone (with no guarantee of treatment), I took the chance of being included in the study – it took almost three years to get referred to a rheumatologist, and I sure as hell wasn’t going to allow myself to suddenly drop off the radar. With that concern sitting alongside the actuality of being left to my own devices since the diagnosis, I truly believed (perhaps somewhat naively) that this was the most logical way of keeping my case ‘active’.  A few weeks into the treatment and the glaring flaw in my thought process could not be more obvious.  I thought I could mould the therapy to my own needs; instead, I found myself dealing with stressors that were non-existent before I made this foolish pact.

I’m not afraid to admit that my relationship with pain is a long and complicated one – I seem to have had growing pains for almost thirty years plus a myriad of issues with my tendons and joints.  And, of course, my old friend Endometriosis knows how to truly cripple me; hospitalising me more times than I can remember and so often leaving me in a state where I would willingly agree to have everything below my bottom rib amputated.  What sets me apart from so many other Fibromyalgia sufferers, though, is that the pain is merely the wallpaper adorning a room full of completely knackered furniture.

When the Fibromyalgia struck back in 2012 pain of the kind so readily associated with the illness was not even in the picture – it was the fatigue that was, and still is, killing me.  And that pain is clearly an extension of the joint and tendon issues I’ve had since childhood. I’ve tried to explain this to several health professionals along the way (my osteopath understands, of course) but it almost appears that they don’t believe the fatigue can be ‘all that bad’ or that it’s somehow secondary to whatever pain I’m currently in. But it was never pain that kept me almost completely bedridden for half of 2013.  However, regardless of my own experience, needs, and protestations, pain therapy was the only option available.

Now I need to point out that I’m not knocking that particular type of therapy as a treatment pathway for people whose lives are being destroyed by pain, but for me, the regimen involved putting aside a lot of my own coping strategies and practical solutions (joint supports and mobility aids were created for a reason…) and replacing them with ‘lighter’ versions of the same things.  I discussed this with the therapist who ‘gently’ insisted that I stick with the correct way of doing things.  However, I was to discover that there were a couple of elephants in the room that my frantic scrambling for any kind of help had blinded me to.

…my life is already pretty full for someone who’s always running on empty

First, there was the goal setting, or rather the OBSESSION with goal setting. Within that framework, there was one goal in particular that I was perhaps too vocal about (due to not having much else I wanted to work towards) in the beginning that was continually brought up in later sessions. “How does this behaviour get you closer to X?”  “But is this keeping you from achieving your goal of X?” and so on until I started to feel as though I was a pathetic excuse for a human who simply wasn’t trying hard enough.  It was only after a three and a half mile skate that it dawned on me that I wasn’t the crumbling failure that the psychologist was seemingly implying. I had been out skating, oh and I design and make my own clothes, and then there’s the blog, and the cinema trips, and my volunteer work, and, yep, the housework and laundry are still getting done.  No wonder I didn’t have many goals that I wanted to work towards – my life is already pretty full for someone who’s always running on empty.  I’m not saying this to make myself seem like some sort of disabled superhero – it’s just to show the perspective of how much more I was expected to carry.

That’s not to say that I don’t understand the importance of goal setting as a way of creating an external marker to track one’s progress, and it’s something I do in my regular life – but, over the last few years, I’ve learned that the cliché ‘where there’s a will there’s a way’ doesn’t often apply to people with faulty engines. I had to take a couple of days to reflect and ‘remember’ who I was, and during that time I grew somewhat resentful of the idea that I wasn’t achieving enough; particularly as the benchmark was being set by a healthy male.  Being forced to ignore my actual accomplishments in order to add to my workload (because let’s face it, whatever we do is as draining as any work day) was the very thing making me feel worse about my situation – quietly goading me with my apparent lack of progress.

I decided that for my own psychological well-being I should separate myself from the study.  That’s when the second large, grey land mammal raised its trunk.  I sent the therapist an email explaining that as the program was so heavily biased towards pain management, perhaps it would be better for me to remove myself from the study group. A day later I received a reply, but instinct told me to wait before reading it – it had arrived on a day that I volunteer and I didn’t want anything to ruin the usually pleasant atmosphere.  The following morning brought a lot of really exciting news for my favourite hockey team, so with my mood suitably elevated I decided to finally open the email. It was a good thing I waited.

In my last paid job I worked with a very manipulative, and somewhat passive aggressive, manager.  Most of the time I could read exactly what he was doing and why, but on occasion, usually when I was feeling emotionally wrecked or unsure of myself, he would catch me out leaving me feeling as though I was bereft of any armour against the outside world. Had I not put some space between the receipt of the email and the reading of it, I might have found myself blindsided by similar tactics.  I don’t think I’ve ever seen so much obfuscation and double speak in one email in my entire life.  Every paragraph had to be read several times over for the meaning to become apparent – and there are still sections where the only logical response is ‘huh?’ The truly troubling element, however, was the fact that he believed that the techniques could be equally effective for fatigue as well as pain.  Think about that for a moment…

The problem with this belief is two-fold.  Firstly, he is interpreting the fatigue outside of the clinical context in which it presents itself, forgetting (perhaps willfully) that the Fibromyalgia is co-morbid with Endometriosis.  Fatigue forms a large part of Endometriosis symptoms and many sufferers, particularly those with a disturbing amount of ‘deep pelvic’ adhesions, like myself, will end up with a giant dollop of chronic fatigue dumped on their plates alongside all of the other horrors that the disease brings.

“As the Endometrial tissue grows and expands in the abdominal cavity it causes greater and greater fatigue” – Carol Gable

Secondly, if he truly believes that the CBT/mindfulness-lite can be used to treat fatigue, then he must believe that the symptom is psychosomatic in origin.  Does this sound familiar? He has every right to believe that, of course, but I know that it does not pertain to me.  This fatigue didn’t come along gradually after a period of high-stress or landed on me as a by-product of Depression: I can trace the origin of the debilitating flu-like symptoms back to a single point in time – the moment when somebody else’s blood was deposited into my veins. I’m not even saying that there was something wrong with the donated blood; it may have simply been the case that after years of trying to clean up the mess created by continual internal haemorrhaging, my immune system just couldn’t cope with the assimilation process. Either way, due to years of having my system poked, podded and poisoned, I knew my body well enough to have sought help over three years ago. I know it takes a while for medical research, such as the neurological elements of Fibromyalgia, to trickle down to the patient level, but it’s more than a little irritating to be told so far down the line that the fatigue is merely a symptom of a psychological illness.

As messy and disappointing as this situation is, it has taught me a valuable lesson.  From here on in whenever I have to deal with a medical professional in regards to the Fibromyalgia I will always ask whether they believe the illness has a physical origin or a psychological one.  If the answer is the latter I will know not to waste my time, or theirs.