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Five days in Hell (A Halloween Story)

Here’s a Halloween story for you. This week has been hellish for me. On Wednesday afternoon I was finally officially diagnosed with Fibromyalgia some six and a half years after it was first diagnosed.

I’d refer to it as a funny story, except it really isn’t. In the Spring of 2004 I went to an appointment with an eminent consultant rheumatologist in a famous teaching hospital in London. It was supposedly for confirmation of my diagnosis of Ehlers-Danlos Syndrome. Obviously having a bad day, the eminent consultant did not look at my notes and dismissed the diagnosis made by one of his own hand-selected team of consultants. He had a quick prod and caused me to yelp a bit before declaring I did not have EDS I at all, but Fibromyalgia and some ‘benign hypermobility’. Thankfully he either never wrote up his notes, or his letter did not get to my GP, because when I went back to hospital, instead seeing the same hand=selected consultant who diagnosed me, he said there was no record and his diagnosis still stood.

However, that meant that Fibromyalgia also never made it to my notes. Once again I began the rounds of asking my GP and consultants for pain relief, citing the mention of Fibromyalgia. “It’s not on your notes,” was always the response. The other gem that always came out was, “I won’t prescribe you anything, you’ll get addicted.” As the years went by, choruses of “Of course you’re in pain, you have EDS,” and “You don’t need to go to the pain clinic, you’ve studied psychology!” were added. One GP took me seriously when I lived in Sheffield, but she only prescribed Diclofenac, which came into its own when I got whiplash following a car accident in July 2009, but did nothing for the pain I had back then. Finally in February this year I went armed with a bullet-point list, to prevent my forgetting anything, to my GP . When I asked for a referral to check for Fibromyalgia he said, “OK, but first I want to get your hypothyroidism under control.”

And there was another battle I’d had on my hands – since December 2007 I had been having “Borderline” abnormal thyroid test results, but none of my GPs in that time had been willing to stick their necks out and diagnose or treat me. My undiagnosed health concerns meant I did poorly in my Masters – I even failed one module twice and was only granted a resit because I went to the (yet another) GP and cried until she wrote a letter saying I was being investigated for “ongoing health abnormalities” which had affected my performance.

So, now someone was saying the two were connected – I was in pain because I had a thyroid problem. Great! All will be sorted then! At least there’s medication for this one, right?” And off for more tests I went. And yes, I did have a thyroid problem, an autoimmune one at that, Hashimoto’s Thyroiditis. So I was put onto 25mcg thyroxine daily and it was expected that that would be all I needed.

Except I didn’t really feel much better. Sure, my results began to fall in the slightly more normal category, but I still felt awful. I assumed it was ‘just ME’ rearing its head again, and proceeded with my life, left my partner, set up home as a single parent, yadda yadda yadda. I only really went to the GP in September to check on my referrals for my cornea transplant and to get my thyroxine prescription re-issued by my new GP.

Would you believe it, my new GP was amazing! He saw that even though I was now on thyroxine I still had not been officially diagnosed with Hashimoto’s Thyroiditis, despite now more than fulfilling the clinical criteria. So I was on far too low of a dose of thyroxine, and my levels also were too low. I queried the by now almost mythical Fibromyalgia referral and he actually asked why I wanted one! I gabbled my woes of the last six and a half years to him and he agreed that I should be seen, and that diclofenac would have done nothing for nerve pain, and once again one of my GPs had passed the buck and not referred me.

So here I was, six weeks later, sitting across from the rheumatologist and telling him all this. All these dismissals and dodges, and he listened. His examination was quick, and excruciatingly painful. I barely made a sound whilst giving birth to my son using only a Tens machine and entonox, but this was different, it was like he knew every spot of my body that hurt, and then some more which I didn’t know about. Boy, did I make it well known when he was hitting all the right (wrong?) spots!

Of course, he confirmed what I had known all this time, that I did indeed have Fibromyalgia, and he asked what pain relief I was on now for my EDS.
“Oh, nothing,” I responded.
He raised an eyebrow, “Nothing?”

Here I was, seven years after the whole EDS saga started, twelve and a half years post-ME diagnosis and finally, FINALLY, there was someone who thought I should have got a grain of pain relief in all that time. No accusations of drug dependence, no telling me it was all in my mind, just a nice man telling me that yes, I should have had access to pain relief, to a pain management clinic for all this time.

And that’s why this diagnosis has been so bittersweet. I don’t want to have yet another string to add to my invisible illness bow, but just hearing someone tell me that my feelings all this time weren’t wrong, that I did need help was a relief.

But then the anger set in. Not that I had much time to deal with that, because the nice man prescribed me Amitriptyline. For some it’s a wonder drug, it takes away pain, it regulates sleep. And I’ll agree, for the three days that I took it I wasn’t in any pain. But then I was barely conscious. Thankfully I have had the week off work, and my car is at the garage for some repairs, so my Dad (himself recovering from surgery) has been driving James to and from nursery, which was just as well really, because I couldn’t have driven. For two of the three days I took it I could leave my bed only for the most basic of hygiene needs. I didn’t eat, shower, brush my teeth, change my clothes. If I went anywhere I crawled because otherwise I would fall, my eyes closed even behind my sunglasses because of extreme light sensitivity. It was me, a bottle of water, my bed and a darkened room.

I realise for some that’s daily life, and I do appreciate that I was able to just stop taking the poison, but to plummet so rapidly from someone able to live a virtually normal life, albeit with severe pain, to that was something I did not even know was possible. I immediately cut down to half a tablet on the second day, but it had no effect, I was still like the living dead. On day four, after another half dose the previous night, I attempted to do some food shopping, late in the day when I had come to my senses enough (this was after buttering my phone instead of my toast). I don’t remember anything that I bought. Apparently I thought lots of Lucozade was a good idea. Mealtimes will be fun this week.

Today is day five. I didn’t take any last night, and I woke up slightly clearer headed. But now as it is working its way out of my system I am on a major come-down. The pain is setting back in at the same time as I am grappling with extreme depression over what the hell exactly am I doing with my life? I want to contribute to the cause, I want to present a candid picture of invisible illness, but half the time I just don’t have the energy or the concentration. I believe it is because I am experiencing such a rollercoaster of emotions today – well enough to be up and about and enjoy Halloween with James; with periodic bathroom breaks to sit and sob for goodness only knows what reason – that I am sitting here typing this.

All I can do at the moment is tell my story in as much frightening detail as possible. That this is what chronic illness is like – a new medication full of promises of pain relief and refreshing sleep can be poisonous. The reality of the situation is that I still sit here contemplating taking a tablet tonight. I have to go to work in the morning, but the pain is back and I know that those pills sitting there on my kitchen counter could stop the pain. Or I stay away, go back to the pain, embrace it even, because it means I’m still out there, still living some sort of normality. We won’t even go into the black dog at my door, growling to me to take them all – that’s not me, that’s the drugs talking.

One thing is for sure, my GP will be seeing me again very soon.

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