Chronic Fatigue Syndrome. Also known as CFS or M.E

I’m trying to make sense of the diagnosis. Could the doctor be wrong?

I review the evidence.

For years I’ve been having blood tests searching for a reason for exhaustion. The result is always “normal except for a low white blood cell count” to which doctor’s say “You’re probably just recovering from a cold or infection.” (Though an eccentric one years ago did ask if I was a drug user “Not taking the old Charlie are you?” No.)

And there’s only so many times you can say “But I’m so tired”. You learn to incorporate it into your life.

Until you can’t.

In 2015 I went to the doctor when I could no longer get through a Zumba class. I bloody loved Zumba. As a head-based person, the physical joy of dancing is pure liberation. But gradually I could no longer sustain a whole hour. And if I did, I’d have to lie down after. For a long time. Maybe the whole day. Soon, I became too debilitated to work. I was freelance with no safety net, which caused extra stress.

A doctor diagnosed depression. Said menopause might be adding to or causing the problem but that either way anti-depressants would help. It took a few years to recover. It wasn’t the first time. I’m a survivor of what are now referred to as ACEs – Adverse Childhood Experiences. Evidence shows this can mean a lifelong susceptibility to mental/physical health problems. But I managed them with therapy and loving relationships and meditation and writing and a happy part-time job.

And it was working.

Till it wasn’t.

To set the scene: My job is in an Autism Base within a High School and I love it. I love the students, my colleagues are great, and I’m able to be myself there. I don’t earn much but otherwise it’s one of my ‘favouritist’ jobs ever. The days that I’m not there I set aside for writing. Which is wonderful. There’s my blog and an exciting collaboration with my sister on converting a screenplay we wrote into an audio series. I have a fun and cosy home life with ML and our beloved cat Sefi.

And to me that’s a successful life.

Except for…My lost days.

On school days, when I have to get up at 6.00am, caffeine, adrenaline and necessity push me out the front door. But on the other days, I keep crashing like a virus-riddled laptop. I call these ‘my lost days’ because I lose the ability to do what I would do if only I felt well enough.

They’d become less frequent since recovering from depression but they’ve been piling up again. Only I haven’t been seeing the whole picture. I’ve been approaching lost days on an individual basis; trying each time to figure out a fix. What am I doing wrong? That was always my thought.

The most likely culprit was sleep deprivation. I should give up caffeine. Shit, fuck. Rich black coffee. My daily pleasure. My lovely writing muse. I only had it twice a day, both in the morning, but perhaps I was medicating my exhaustion and maybe it was provoking my lifelong tendency to insomnia (worsened by the menopause). Plus it made me more reliant on sleep aids and the anti-histamines I’ve been taking for years for this purpose added to my fatigue. Sedative to sleep, stimulant to wake.

So I gave up caffeine. I did it! And my sleep was deeper. And I reduced my drowsy tabs right down to a quarter a night. And I thought, hey, I’m probably fixed now. I will become a person that sleeps and who has energy and completes her projects! Go me!

Except…

That’s not what happened.

Instead, my brain shut down. Maybe it had been running on adrenaline and caffeine and now it wasn’t running on anything. It felt like a chunk of my mind was dissolving, the cognitive part: Executive Function. Disappearing words. Half finished sentences. Getting lost in the corridors. Losing possessions. Inability to focus. It was frightening and upsetting me. A friend suggested it was anxiety (what with 2020 being…well, you know…) but I felt this was different. ML arranged the doctor for me.

On the phone, rather than face to face, the consultation went deeper. I cried as I tried with my reduced powers of communication, to explain the brain fog. “It’s okay, you’re doing well,” he said. He asked lots of question about the fatigue in a way that doctors haven’t before. Is it worse after activity? Yes. If I have a ‘good day’ and do a lot, what happens the next day? I’m wrecked. Do I have any pain? Umm…do the decades of neck, head and shoulder pain count? He asked me about my mood of course but I told him my depression is under control with meds/therapy.

The extreme brain fog seemed to make his mind up. Something specific and measurable that started at a particular time. He says “I’ll do more blood tests if you want, rule out anything else but I’m pretty sure they’ll come back normal. I’m pretty sure it’s Chronic Fatigue Syndrome.”

I didn’t want to accept this. It’s something my sister has, not me. Hers includes Fibromyalgia. She needs powerful pain pills. Saw a specialist for years until he retired. I have been forever in awe of her way of bringing joy, creativity and enthusiasm into her life throughout living with this extreme and cruel condition. But I’m not sure I can manage the same. I just feel cheated out of finally inhabiting the life I have so painstakingly created.

And I don’t want another thing to add to my portfolio of challenges. And what if people think I’m making it up? Or just not trying hard enough? Or…or… am copying my sister? (To be fair, we are quite synchronous. She once broke her foot and then I went and broke my knee!). But anyway, I especially don’t want this diagnosis because I want something fixable. I want to just ‘do the right stuff and be well‘.

Maybe the doctor is wrong. Maybe this time the blood tests will show a nameable condition with known treatments, the kind it will be easy to tell people about: “I’ve got such and such” and they’ll understand. Not this invisible condition that some don’t even believe exists and that I will have to manage for…what, weeks, months, years?

Maybe the doctor is wrong.

I phone ML and she’s kind and level-headed. She says: “You’ve been living with this for a long time, so nothing has actually changed; but now you can understand it and can plan what you need. We can handle this together. Like we always do.“

I phone my Line Manager to say I won’t be in work this week because I am not well enough. I cry as I try to explain. I don’t know what I need yet. He’s kind too. He says work will support whatever I need to do. “We just care about your wellbeing.”

Still, maybe the doctor is wrong and I’ll get better soon and I won’t be off that long.

I pick up my diary and scan through the pages at what I had in my mind classed as sporadic lost days that I just need to solve so I can get back to my writing. I’m quite shocked at what I see. Day after day after day after day of “felt shit today but coped“, “felt terrible today but made myself do stuff“, “felt absolutely awful, had a bath but had to go straight back to bed,” “extremely wrecked today but forced myself to X/Y/Z.” I see what I’ve been hiding or just trying to absorb into my life.

I need an alternative.

Somewhere, underneath the grief and disbelief, I sense a possibility, something that will free me. A different way to see this.

But I need help. I need to talk to my sister.