In the beginning there was ME/CFS and Fibromyalgia

In the Spring of 2014, I developed an extraordinary headache.  I consider myself fortunate that I’ve never been a very headachey person – apart from a corking red wine hangover once which I’ll never forget. But this headache was unlike anything I’d experienced before and surpassed the achievements of even the cruellest cheap red plonk. It started with an extraordinary pressure in the base of my skull. It spread across my head and into my eyes and it made my brain feel squashed and swollen. I could hear my pulse in my ears: “shoof shoof shoof!” My eyes became increasingly sensitive to light. And my neck stiffened till I couldn’t move it. I also developed a reddy purpley rash.  I lost track of taking my temperature after it passed 38 degrees centigrade,  shortly after which  I went to bed too ill to move or to call a doctor.  To add insult to injury, something like the flu joined in with this symphony  of symptoms – if it wasn’t for the fact that I’m female, I’d have said it was at least as debilitating as man-flu..

To cut a long story short, a few days later the worst of it had passed,  and despite feeling like I had one heck of a hangover, I was ready to get some food. I got out of bed…

…and couldn’t walk to the kitchen.

Well, I got there: it’s only about ten paces from my bed and on the same floor.  But I got there by holding on to the walls and collapsing on the kitchen sofa, suddenly and unexplainably exhausted and I passed out into a disturbed sleep.

I was utterly exhausted from taking just a few steps. That was how quickly the neurological-immunological diseases ME and Fibromyalgia hit me: I went to bed one day and a few days later couldn’t walk to the kitchen.  ME and Fibro changed my life.

As anyone who’s been diagnosed with a chronic illness will know, it took months to get a diagnosis. So during that time I documented my symptoms to try and learn what was going on with my body. I knew this wasn’t just a lingering virus. Something significant had changed. By channelling my inner geek I kept symptom diaries, I learned to recognise what my symptoms were and their patterns of behaviour.  Yes – there were even spreadsheets and colour coded graphs documenting peaks and troughs in symptoms like pain and weakness and muscle spasms.  This level of geekery may sound a bit obsessive, but they helped me articulate my vast array of symptoms when speaking to doctors and they helped me identify my triggers.

After dialogues with medical professionals from a range of disciplines I gradually learned some things about my conditions: I am considered a Severe ME sufferer (don’t you just hate the word sufferer?).  I function at 20-25% on the functional ability scale – in other words I am essentially a quarter of the person I used to be. And my symptom list reads like the index of the British Medical Journal.

Like a lot of people with ME (or CFS as it’s known, amongst numerous other acronyms) I experience  something called Post Exertional Malaise (or PEM).  This is a hilariously inadequate term describing a delayed reaction to physical or mental exertion that causes energy levels to plummet, leaving me bedridden  and in excruciating pain for 4-10 days. Between the act of exertion (for example, having a shower or going to the doctor’s) and the PEM that it causes, is a 24-36 hour no man’s land. During this period I experience a number of things: a sudden, desperate urge to sleep immediately after the exertion – as happened that first day I tried to walk to the kitchen. The desperation for sleep  cannot be fought and my body and brain shut down for several hours. If I try to fight it I slur my words, I can’t recall basic information like my date of birth or where I am, I’ll lose motor control, I’ll collapse with exhaustion and sob, and I can even end up having a seizure. So if I can at all help it, I don’t fight the urge to sleep. I have learned that the hard way.  It’s just like that moment when your computer crashes and you get the blue screen of death: it doesn’t matter how many times you hit ctrl-alt-delete, it’s a goner.  All you can do is turn the power off, wait a bit and turn it back on again hoping it still works.  That’s what happens to my brain and body each time I crash too.

After the brief sleep comes the slow, groggy period of existence before the PEM hits. Pain levels are high, memory is poor, movement resembles that of an alcoholic sloth and physical strength is low during this 24-36 hour period. It’s like the slowest, most agonising reboot in safemode you’ve ever had to wait for. Only to find that PEM ensures the system crashes again straight away and you still need a full system restore, McAffee scan and defrag anyway. Gawd forbid you’ve forgotten to set a system restore point recently…

So as an homage to my life with ME and Fibromyalgia and what I call my blue screen moments and reboots,  I have named this blog simply:  Bluescreen Reboot.

A positive thought to end on: I’ve had a two year rollercoaster with this illness and it’s been more like Oblivion at Alton Towers than the Dragon Coaster at LEGOLAND Windsor – in the sense that it’s been pretty much a vertical drop – ironically it’s also involved several literal vertical drops where my fear of having lost control of my limbs has been surpassed only by my sense on shame and embarrassment at falling flat on my face in public.  But having grieved for things I’ve lost, like my career and aspects of my independence, I’ve come out the other side of wearing my mourning weeds, feeling that I have learned a lot about myself that had I remained healthy, I would never have done.  I’ve learned empathy and patience – with myself.  It’s easy to have those things for other people but it’s a darn sight harder to be kind to yourself when you have such high expectations of your own body and brain’ ability.  I’ve learned to define myself by values not by career.  And I’ve learned to accept help – I’m still working on learning to ask for it.

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4 Comments Add yours

  1. CJ says:

    Thanks for reading my post on strangelabel. It’s been 18 months for me and now 6 different diagnoses. My life has changed significantly too. I think it’s great you’ve started a blog. I’m not always positive on mine but that’s ok too! 🙂

    Liked by 1 person

    1. Thanks for your kind comment, CJ. Sorry you’re having a hard time of it with diagnoses. I’ve become quite stoic about diagnosis because so much of being diagnosed via exclusion of other illnesses is pot luck. I was diagnosed with ME and Fibromyalgia because I ended up referred to a Rheumatologist. I don’t doubt that had I been referred to an endocrinologist, immunologist or neurologist, my diagnosis may have been different. I know for other people diagnosed with ME/CFS and similar illnesses that level of variation has occurred between doctors. Personally, I feel that as long as I’m being diagnosed with untreatable illnesses it makes no real difference which label a doc gives me. So well done for remaining strong and open minded through all your diagnoses! And I hope the way you’re managing your lifestyle starts to help your HPA axis problems.

      Liked by 1 person

      1. CJ says:

        That sentence ‘as long as I’m being diagnosed with untreatable illnesses…’ actually made me laugh out loud! I guess when you’ve been there, you can see the funny side of it. I spoke to someone about the HPA-D today and they said ‘great so what does that mean now?’… I said ‘uhhh just more of the same’…

        Like

      2. Well, like I said, I’ve become quite stoic. 😀 I know people who genuinely worry that their diagnosis is wrong and that worry is ruining their lives as much as their illness. Most of the illnesses that have the same symptoms as I have aren’t treatable. And even ones like lupus that have some treatments (like immune suppressants) can have such terrible side effects that I might not take them even if offered them). So the way I see it is that I’m not losing a head start in treating what’s wrong with me even if it’s a wrong diagnosis, so I might as well find ways of living with and dealing with my current symptoms. Worrying certainly won’t help and would serve only to make me feel more unwell.

        Like

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