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.

Benefit cuts and me

Here is my story on my life, and how the government’s benefit cuts will affect me, and James.  This was first published on The Broken of Britain, a new campaign collecting the stories of disabled people across the UK of how the benefit cuts will affect them.  My story is by no means particularly shocking – some people out there will end up virtually cut off from the outside world, but it does cover issues of housing, and questions how on earth the disabled are going to be able to fight for, and obtain, such limited resources now.

I did get upset writing this, which was one of the reasons why I never did make a video response to Bendy Girl‘s original vlog which started the ball rolling on this project – I couldn’t have done it without tears.  But it was also incredibly cathartic to write it down.  I have only just accepted my limitations, it is early in the fight for me, but I will keep going, keep fighting to retain my qualify of life.

“Things were promising when I was younger. Top of the class, I was studious, dedicated, motivated. I enjoyed music, singing, acting and dancing on stage, long-distance swimming, cycling and much more. On my 16th birthday I interviewed and was offered my first job, 20 hours a week on top of my 25 hours of school studying for my GCSEs.

When I was 17 it all came crashing down. Days after my 17th birthday I was told I needed surgery, an attempt to cure the extreme exhaustion I had been suffering for several years by this point. It didn’t help. Instead, the errors that occurred and multiple surgeries to repair damage and save my life left me bedbound and extremely unwell. Four months later I received the first of many diagnoses – this one in particular was ME/CFS.

I am now 29 years old. A single mother of a 3 year old. I have now also been diagnosed with Ehlers-Danlos Syndrome and Hashimoto’s Thyroidits. I have had severe migraines and sensorineural hearing loss as a result of having meningitis when I was 5. I am awaiting a cornea transplant – my vision is terrible due to the condition Pellucid Marginal Degeneration, and this week I finally have an appointment with a rheumatologist to assess me for Fibromyalgia. Each of these on their own is limiting, but all together they are serving to drag me down a little bit more each day.

So much so that in the days leading up to the announcement of the planned cuts, I came to realise that I need a lot more help than I have ever been willing to take. Always wanting to be seen as the best amongst my peers, to be successful, to be self-sufficient and independent, I have always steadfastly refused to take anything except the tax credits I am entitled to as a working mother.

But these days these are not enough. I live in one of the most expensive areas of the country outside London, and I have always rented privately. Currently my rent is more than I earn and private letting agents in my area all have a strict ‘No LHA’ rule. My parents pay my rent, eating into their retirement fund a little bit more each month, when they plan to retire in the next year or so.

Not to say money is the only issue. I am increasingly less able to work. Currently I am struggling to work 22.5 hours a week. I roll in late and I leave early. When I get home, instead of collecting my son straight from nursery, I sleep, and leave it until the last minute to collect him. I average 1 day a week sick each and every week. Sadly, this is the most hours I have ever worked. And it is killing me. Despite this, my need for money to house myself and my son is so great I am currently applying for full time work wherever I possibly can even though I know it will be beyond my capabilities. This has not been a successful endeavour. I do disclose my health status, and I never get anywhere. In fact, the only jobs I have ever successfully obtained have been when I do not disclose this information. Coincidence? Perhaps, but I am inclined to believe not.

In the last few weeks I have been coming to a point of acceptance in my life, that I am in fact disabled. In all these years I never wanted to admit it before. I did not want to think that I might never be fit enough to work the long draining hours of my dream profession – a Health Psychologist, despite the fact that I have the education to undertake this profession. I did not want to think of myself living in council accommodation. I referred to myself as, “scummy, chavvy, benefit scrounging.” Fully accepting and buying into the media stereotypes of both single mothers and the disabled. But now I am finally accepting my limitations, realising that the more and more I push myself the less of a mother I am becoming, because I work all week and then lose my weekends to migraines and excruciating pain. My parents come around and clean my house, feed and dress my son, and take him out on activities that I as his mother should be doing with him, whilst I lay in a darkened room wishing I was someone else.

The cuts to the benefits system scare me, because just as I am about to apply for them, they become increasingly unobtainable. Do I have the energy to fight at tribunals? Or the cognitive abilities? What happens should I become even less able to work? This week I have put my name on the housing register – will we even have a shot at a house now? Can I go through all this, or should I just have my son adopted now and lay down in the gutter to die?

The one glimmer of hope for me is my son. By being a single parent I have an elevated status, a privilege not afforded to childless disabled people my age. And I despise myself for thinking that way, for looking at my son and thinking “Thank goodness for you, you’re my work-around,” instead of “Thank goodness for you, you keep me going.”

The most heartbreaking thing is that in the past few weeks I’ve began to realise I need to get my son assessed for Ehlers-Danlos Syndrome too. He has begun to complain of pain in the same places as I experience it, crying out in pain when he gets out of bed in the morning, just as I used to before I learnt to bite my lip and hold back the tears that always come each morning. If he is also affected then these cuts will affect us even more. Not even necessarily on practical matters, but because of the knowledge that this government does not want to help the people who suffer. As a mother I don’t care what happens to me, but I care what happens to him. I care about the future of my happy, angelic, caring, clever, funny little boy.”

If you have a story to contribute on how the benefit cuts will affect you, please visit The Broken of Britain and share your story.

Annual low point (a.k.a Why I have been neglecting VI)

A month between posts will not do. Sadly, as many readers here will know and understand, chronic illness can lead to periods of particularly poor health, especially in relapsing and remitting conditions.

I fear I have not really started this off correctly. I have neglected to mention my various health complaints explicitly enough. My main complaint is ME/CFS, and personally I’ve always hovered around my baseline, only deviating slightly. I may have a day or two where I don’t have a headache, or I may have a week or so when my pain is worse than usual. I don’t consider myself to have full blown relapses. In the last 12 and a half years since my diagnosis i haven’t had any relapses that have stopped me from keeping going one way or another, but then I haven’t had any remissions either. Aside from clawing my way back from the brink of death in the 4 months prior to my diagnosis I haven’t made any significant improvement in that time.

Recently I have felt that I am deteriorating. My pain is worse, my migraines more frequent. In September I was finally diagnosed with Hashimoto’s Thyroiditis, after battling various doctors for two years. Even though I am now taking medication I am still struggling. It’s around this time each year that I do experience a low point, and this has been the same for at least 10 years. This year it has not been helped by having flu earlier this month and the knowledge that I am soon to have a cornea transplant.

Don’t get me wrong. It is something I want. My vision is depressingly terrible. Having it corrected may well help to reduce my disabilities there, with the added bonus that I will perhaps stop looking so stupid so often by virtue of the fact that I will be able to see things others point out to me (spiders, dirt, my colleagues standing not 2 metres away from me); and may be able to lipread in noisy environments again, a skill necessary because of my sensorineural hearing loss. But I have to admit, I am terrified. The last few times I have had surgery I have nearly died. I know eyesight is slightly different to mass visceral organ rearrangement, but I cannot shake that feeling. I think this is also why I have not shared any more of my story at the moment – the parts coming up are the ones involving my surgeries and the massive trauma that followed them. I know it sounds dramatic, but honestly, when I do put them up you will understand why I am terrified of hospitals now, despite all my usual outward stoicism. Really I just don’t want to think about it, but I know I have to. My initial appointment to get the ball rolling was meant to be the end of next month, but it has been moved to the beginning, I feel like I have even less time to get my head around this.

And then all this thinking really only serves to drain my energy further. I definitely have a tendency to overthink things, but I do worry about pain, and recovery, and what could possibly go wrong this time. It’s me I’m talking about – things never go to plan. So it’s easier to assume something will go wrong and then be pleasantly surprised when nothing does.

I know I’ll come out of this and be my usual positive self, but sometimes it is so hard. I am mainly desperate for pain relief now – I have an appointment to assess me for Fibromyalgia on Wednesday, which if I do have it will mean that I finally get my pain taken seriously after 6 and a half years of being told I’ll only end up a junkie and to take some paracetamol instead, but it will also take the number of invisible conditions suffered by myself to seven, and I’ll be forced to accept I am not invincible all over again. But then again all this pain could just be a byproduct of my having Ehlers-Danlos Syndrome, who knows? I’ve net really had any form of medical care for it, and certainly no pain management! Perhaps I should have fought harder? I don’t know, I don’t have the energy!

Anyway, bear with me – I am working on this, albeit slowly. And I am networking as much as possible. I don’t know where it’s going, but I want to share my experience and my thoughts. It’s just often so hard to find the energy to keep things going.

Do you get annual slumps like me?  Or is your condition more stable?  Less so?  Do you get relapses and remissions?