I screamed at my Mum, a woman whose father died of cancer when she was only 19 and whose brother recently died from cancer.
“I wish I’d broken my leg”, I shouted at my husband when he came home from hospital after ripping his knee cap off in a running accident.
Yes, I have plumbed the depths of self-pity over the past year. It’s not an attractive quality and this is the post that I’ve most feared writing (and most felt the need to write).
I don’t mean I want to die, though at times I’ve felt my will to live drain away. The slumps of chronic fatigue are like being an iPhone at 5% without a charger. Most of the past year I’ve got by operating in permanent low-power mode.
Nor do I mean that I underestimate the cruelty of cancer – the fear and uncertainty, the pain and suffering. I’ve witnessed the heart-rending impact on friends and family.
What I mean is that I envy having a medically accepted diagnosis, a treatment plan, and understanding and sympathy from friends and family.
CFS isn’t a death sentence but conventional medical wisdom views it as a life sentence that you’re expected to manage. There is no cure. Everyone seems to know someone with CFS. I met one lady who’s had it for 17 years. Last week a colleague told me her sister’s been struggling for 12 years.
You face the terrifying responsibility of healing yourself. No-one else can fix you. The treatment is DIY.
The motor that powered you through long-work weeks, big nights out and epic runs and rides is now flashing an ‘engine warning failure’. Like a mechanic sucking his teeth, doctors shrug their shoulders.
You become your own laboratory, experimenting on your own body and mind.
When Nik came home from hospital in July he was showered with Get Well Soon cards and offers to walk the dogs and run errands. He had hospital appointments and regular physio targets. It was painful but it was tangible.
I felt like I’d fallen off the radar. Yes, he couldn’t run or cycle for three or four months. I hadn’t run or cycled since January. A few days after coming home from hospital he was starting a new job as a magazine editor just as I was telling clients I was having to go down to two days a week with a view to quitting work in the autumn.
My initial reaction was that I’d beat this. I cried with relief when I first talked to the Optimum Health Clinic in the summer. I naively interpreted their ’90 Day Programme’ as a ’90 Day Cure’ and was on the verge of contacting publishers with a pitch about my recovery story.
It turns out that it’s more accurately a ’90 to 1,095 day Programme’. They estimate that establishing a robust recovery more typically takes anywhere between three months to three years. They don’t promise miracles but more importantly they give you hope in the form of expert advice from people who’ve been in the same boat.
I’ll write in more depth about treatment in another blog but it’s not rocket science. In a nutshell, on the nutrition side you cut out everything nice to eat and drink and take bucket loads of supplements. On the psychology side you learn simple techniques to reprogramme your neural pathways and calm down your nervous system.
It’s been expensive. I’ve spent thousands on appointments with the nutritionist and psychologist, on top of the £1,000 plus on private hospital fees to get the initial diagnosis for the prolactinoma. For the first six months I totted up that I was spending £350 a month on vitamins and minerals. And I guesstimate that I’ve lost £20,000 in earnings. Most people can’t afford it. We’re eating into savings.
It’s also tedious – a long list of what-not-to-dos. (Fun things – not going to the pub, not going out the evening and not much going out during the day, not running or cycling, not watching TV or using the computer after eight in the evening…). And a longer list of what-to-start-doing. (Boring things – meditating, resting writing a journal of symptoms and tapping acupuncture points…)
I’ve felt a bit like Matt Damon in Martian, locked in a little bubble on my own, trying to work out how to rebuild my life.
The flip-side of being responsible for your own recovery is a very gradual sense of empowerment. I’m not obliged to pin my hopes on the next round of chemo or radiotherapy. My cure is in my own hands.
I feel like I’ve been sent on crash course in rewiring my own body and brain. The mindset required is a fine balance between accepting the illness without becoming resigned to it.
It has been like a grieving process with denial being swept aside by anger and resentment alternating with depression, gradually giving way to acceptance. Then anger bubbles back up as you weep with despair for everything you’ve lost and finally the gradual realisation that life’s moved on and you’ve changed.
(The only stage I didn’t seem to experience was bargaining. I suppose I didn’t have anything to bargain for or with. Perhaps my book deal fantasy was my way of telling myself I’d get a reward if I tackled this head on.)
It felt like renovating a house that you’re living in. The start is overwhelming, the middle part is depressing and feels like it’ll never end and then you start seeing the light at the end of the tunnel.
I think and hope I’m at the plastering the walls stage. The walls are bare but you can see the potential. In technical terms, it is what the Optimum Health Clinic call Stage 3 Recovery.
In January I got to the top of a hill I’d not walked up for more than a year. Nik’s learned to appreciate walking since being laid-up, something he used to find boring. So we have a new simple pleasure.
In February I stayed out in the pub til 10.30pm for a friends’ baby’s christening. I was on mineral water and everyone else was pissed but it was a night out and I was buzzing.
Last week I did a full day’s work producing and reading the news at our local radio station and redesigned a website for our local bookshop.
On a good day – and the good days are now outweighing the bad days – I genuinely have a sense that this may be the best thing that’s ever happened to me. I’ve had a chance to step off the treadmill and create a more sustainable lifestyle, that will hopefully result in a healthier and happier life.
I recently re-read Anna Karenina and remembered that what I most love about Tolstoy is his ability to convey the humanity of hypocrisy – the ability to hold, almost simultaneously, two entirely contradictory opinions and switch between emotions in an instant – love to hatred, depression to ecstasy, fear to courage.
The truth, as always, is probably somewhere in between. The attention-seeking drama queen in me, always on the look out for a good top line, is grateful she doesn’t have cancer. The relentlessly self-promoting PR wishes for a miracle journey of self-discovery.
It isn’t really. It’s just life.
iamnotme 