Page 23 of My Heart to Find

CHAPTER TEN

Cara

TEARS BLIND ME AS Istare at my graphics tablet. I’ve been trying to work on a sketch of Riley for several hours, trying to calm myself ever since I returned from that disastrous date, before I have to leave for the blood test. I’ve been meaning to add Riley into the cartoon for a while now, but I just can’t stop thinking about the date, recalling it all in excruciating detail.

It was going great when we were talking about Marnie, even if I’d avoided the hug, and then I’d messed it all up. All because of this stupid illness.

It’s completely stolen my life. Sometimes, I feel like I’m just a ghost. I’m so different to how I was before, and I hate it. I’m notmeanymore.

I think one of the worst things about it is that, in the UK at least, it's a controversial diagnosis. Chronic Lyme disease isn't recognized by the NHS. It's almost like it’s not supposed to exist. Whenever I go to my doctor with all my symptoms she always says it can’t possibly be the Lyme disease still.

“You had the treatment for it,” she says. “Three weeks of antibiotics would've been enough to clear it.”

But it wasn't.

Okay, so at the time I believed it was—because you believe doctors automatically, right? You believe them, no question about it. Until you have reason not to.

Three years ago, only a few months after the retreat, I was on a camping holiday with Jana, River, Phia, and Lizzy, and I’d been bitten by a tick. Lizzy had completely freaked out and gone into Google-all-about-Ticks mode and insisted I go to the emergency department. There, the doctors thought I was overacting, I was sure. One of them even said I could’ve pulled the tick out myself with tweezers, but Lizzy kept asking if I was going to get antibiotics. They’d sort of humored me and my group—five giddy young women in their early twenties, panicking about nothing and believing everything they’d read online. At last, they did agree to give me a three-week course of antibiotics, but kept emphasizing that it was a precaution and mainly because the head of the tick had got stuck and they’d had to spend twenty excruciating minutes gouging it out with sterilized needles and tweezers.

“Lyme disease is very rare,” they’d said. “But this will make sure you don’t get it.”

I popped each of the required pills, exactly on time, for the next three weeks. And I felt fine. Yay, I’d avoided Lyme disease!

It wasn't until a month or so later after I had finished the antibiotics that I began to feelveryunwell. The fatigue was the first thing. It was like a bucket of tiredness had been poured over me, a never-ending bucket, and I could never get away from the torrent of it. My joints began to ache. My muscles would protest at the slightest thing. Then came the heart problems. Just getting out of bed became difficult because my heart rate would soar, getting higher and higher until my blood pressure plummeted, leaving me in a collapsed mess on the floor as I grappled with unconsciousness.

The GP said it was anxiety, at that point. I mean, Mum even asked about the possibility of Lyme, but she was shot down quick as lightning. I’d been treated for Lyme. This was just anxiety. Nothing to worry about. Huh.

My symptoms escalated from there. Within a few months, I was fainting multiple times a day. My chest constantly felt heavy. It was a struggle to breathe after walking upstairs. Eventually, the NHS doctors diagnosed me with Postural Orthostatic Tachycardia Syndrome. They said it was common in teenage girls and young women. I was 22 then. And they presented it to me like it was the answer to all my troubles.

But POTS is just a collection of symptoms, all the websites say that. It’s a syndrome. It has a cause. And when all the drugs the doctors and consultants were giving me didn’t help, I began doing research trying to find out what caused this condition. Lyme disease came up time and time again in this research. No surprise there.

"But you were successfully treated for Lyme disease," my GP said, rolling her eyes, when I brought up my research, maybe for the second or third time. She was clearly sick of me taking up time in her office now, and always asking the same questions. “Three weeks would’ve gotten rid of it definitely. It can’t be Lyme disease. It really is just POTS.”

“So why didn’t the Fludrocortisone and Midodrine help the POTS?”

She didn’t have an answer.

I was passed from doctor to doctor under the NHS as they tried to work out why my POTS wasn’t responding to the usual drugs. Other conditions were ruled out, but still I was getting worse, sicker and sicker as my life was sucked away.

Eventually, I struggled walkinganywhere, not just upstairs. I told my Mum I thought I was dying. How could I be this sick and doctors not diagnose me with anything? The medical professionals began to blame anxiety again—something I’d read was likely to happen.

Six months passed, and I was a prisoner inside my useless body. My friends began to disappear, all apart from Jana. Even though I couldn’t meet up with them all, she’d still make an effort to call me. But I heard the others talking, once. Lizzy the Levelheaded and River the Repulsive and Phia the Flawless.

“If there was something actually wrong with her, doctors would’ve found it by now,” River had said once. “They know what they’re doing.”

“But those articles said chronic Lyme is a thing,” Lizzy had replied.

“But it’s not chronic Lyme, is it?” River snorted. “Cara told us her GP said it isn’t. So, it isn’t. She’s just wanting it to be. But this is all in her head.”

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