Desperate for a diagnosis

We’re so often told that labels are bad. Don’t objectify me. Don’t tell me which tribe I belong to. I’m an individual. Me. Unique. Like no other. Except I DO need a label. I need to be told which illness I have.

I have what I think is one of the best jobs in the world. I’m a journalist at ITV News where I get to report on the big stories of the day in the Channel Islands, and when I’m not doing that on-screen I get to run the newsdesk and produce our flagship nightly news programme.

Actually, the tense in that last paragraph is completely wrong. I used to do those things, but I have been signed off sick since the start of January… and nobody knows what’s wrong with me.

I’ve had a chequered history when it comes to health. In 1999, I was diagnosed with testicular cancer and underwent three months of chemotherapy after the cancer spread to my chest and lungs. But they fixed me and life moved on.

But in 2014, that changed. I started coughing and choking for no apparent reason. After months of varying theories they spotted the cancer had returned to my lungs. In January 2015, they removed two chunks of my right lung – and after a few months of recovery, I was well and back to work.

But the following year a scan showed up more trouble, more cancer between my heart and windpipe. In August 2016, I had that cut out. Another few months of recovery, and I was back to work in November. You will never know how good it felt to be back doing what I love the most. Live reporting on TV each night, and producing our half-hour programme. I was in my element.

But something wasn’t right.

I was sweating excessively. And when I say excessive, I mean peeling my clothes off at the end of the day and standing in front of the fridge and freezer in the middle of the night as I was wet through from head to toe.

I was getting ridiculously tired. By early afternoon on a normal working day I felt like I’d done ten rounds with Mike Tyson.

My ability to think clearly was fading. A kind of brain fog. My instinctive creativity when it came to producing TV reports was running dry. My flair for writing was becoming functional and ordinary.

By mid-December I was getting blinding headaches and nausea. Something wasn’t right. But with Christmas in sight, I ploughed on.

It’s only when I stopped that I really crashed. Living on adrenaline can mask reality, so it was Christmas Day itself that I hit the wall. By 2pm that day I was back in bed. The same the next day. And when I was due to be back in work between Christmas and New Year, even the thought of it made me ill. I just needed to sleep, sleep and sleep. Even on New Year’s Eve, a night for celebrating, I was in bed and asleep by 8pm.

Welcome to 2017. A new year and a new start. Rested and refreshed, I returned to work. But that was a mistake. I was fading fast and things came to a head for me when, live on air in the studio explaining one of the day’s main stories to our viewers, I had an out of body experience. I was looking back at myself and my colleagues from up in the ceiling, laughing inside in the knowledge nobody else in the studio knew I had the power of levitation. Woah! And all this while I was in the middle of a live report. That was the point I knew I had to get fixed.

I should explain, as part of my post-operative recovery, consultants at two hospitals put my tiredness and sweats down to what I’d been through. Nothing to worry about. It’ll pass.

It didn’t!

I visited my GP who immediately signed me off for one month, telling me to stop. He explained my body, for whatever reason, wasn’t functioning as it should and that fighting it was pointless. As much as that was a terribly upsetting moment as I felt like I was admitting defeat, I also knew he was right.

And here we are, seven months later, and I still don’t know what’s wrong with me.

I’ve seen an oncologist on numerous occasions. I’ve seen an endocrinologist. I’ve been referred to a gastroenterologist. I’ve undergone blood tests galore, scans and even a specialist test to see if my pituitary gland has packed up. All have proved fruitless.

At various points, the doctors have mentioned fibromyalgia, chronic fatigue syndrome and myalgic encephalomyelitis as possibilities. They’ve considered whether my cancer has returned. But none has, so far sussed it. So, the tests go on, the theories continue to be aired, and I still lack a label.

Life is tough right now. What’s perhaps most frustrating is that I look fine. I look like me. In photos I smile and seem happy. I’m chatty when I see friends and family. But nobody, other than my fiancé, sees the amount of time I spend in bed because I am too exhausted to even talk or watch TV.

My shopping list of symptoms can be split into the everyday ones and the occasional ones that come and go every few days. Here goes…

Everyday: fatigue, sweats, cold chills, dull headaches, chattering teeth, sore shoulder, neck and lower back, pain in my left wrist and right ankle.

Occasional: difficulty thinking, using the wrong words when I speak, losing my train of thought, feeling faint when I stand up, blurry edge of vision, difficulty reading as the words wobble, electric bolt sensations across my chest and down my right arm, a pain down my left side that’s too sore to sleep on, a waterfall sensation inside my skull, a painful jaw when I eat, sharp splitting headaches, and an out-of-character dislike of the thought of being around people with an overwhelming urge to lie alone and quiet so there are no stimuli to bother my body.

Well there you go!

I have tried going to work for the odd hour or two here and there. It’s always a joy as I miss my work and miss my colleagues and friends even more. But it’s just too much. The moment I turn my thoughts to carrying out work tasks, my brain fades, my body feels like it’s seizing up, and I need to go to sleep.

I am able to write articles and analyse reports from home, so I do my best to write stories and blogs, and find stories and leads that I can send to work for them to develop into content for our website and programme – but it’s really not a patch on what I’d rather be doing. I crave boring normality!

This past seven months has been a fascinating learning curve for me. I’ve learned so much about myself, about what drives me, about how helpless and frustrated I feel when I’m unable to do even seemingly simple tasks. And how thoroughly miserable it is not knowing what’s wrong with me.

I am desperate for a label, for a diagnosis. I’m at the point where I don’t actually mind what it is, even something serious. Knowing what’s wrong means I can then get on with tackling it, with fixing it, with regaining some control over my life and regaining hope that I can do all the things I used to do.

There’s no grand moral to this story. It’s my first Medium post, so I thought I’d used it to bring you up to date on my story so far. Here’s hoping the next instalment brings news of a breakthrough!


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