“The Blue File” – CFS

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This is for Sarah‘s friend.

She’s having what they call a “Blue file” patch. I’ve had a few of them too – those times when things get turned upside down in such a dramatic hurry that your brain shuts down – you cannot process all the information that comes streaming toward you in an endless torrent, but at the same time you know that at some point you are going to have to process it all in order to survive in this new world you find yourself in.

My first baby was one of those experiences. So was retiring from swimming. Breaking my neck five weeks out from the Barcelona Olympic Games trials was another, but the first “Blue File” episode I recall crept up on me over the course of nine months and then flattened me with a king hit. I was 15, fat and desperate:

***

I went to another doctor, had another blood test – negative to all anomalies.

Two more doctors, more tests – negative, negative, negative to everything.

“You’re fit and healthy. There’s nothing wrong with you.” But the bass drum and axe in my head suggested otherwise. Perhaps I had a tumour.

“It’s all in your mind. Maybe it’s time you snapped out of it.” But I knew how much I wanted out and clicking my ruby heels was not working.

“It’s just teenage stuff, you know, puberty blues. Do you have a boyfriend?” No! Because I’m too damned fat and too damned angry!

“Maybe she needs to see a psychiatrist.  She really could do with some help for her depression. There are drugs that could pep her up a bit.” The doctors stopped speaking to me directly. I was incapable of comprehending their wisdom. Maybe they were right. All in my head – imagining exhaustion, pretending to ache, creating head spins, manufacturing migraines… Maybe I was completely mad.

But my parents wanted their daughter back.

New doctor. New tests. Positive to Epstein Barr Virus.

“Nadine, these tests tell us that you had glandular fever. Probably about nine months ago. That’s why it’s been so hard to detect. You don’t have it now, but because you kept training when you were sick, your body has broken down completely. According to these tests your… liver doesn’t work properly. Your metabolism is shot. And given the symptoms you’ve described I’d say you’re suffering adrenal exhaustion. Do you find it hard to sleep?… mhmm… Your serotonin levels are probably, well, not good, which will throw your melatonin levels out, too.  Your immune system is completely hypersensitive and hyperactive. It’s attacking itself every time you’re under any kind of stress and, well, basically it all adds up to Chronic Fatigue Syndrome.” The doctor paused for a response.

Blank.

“It’s otherwise known as ME.”

Blank.

“Yuppie flu?” he tried.

“And the depression, the mood swings, the big fat air-head bitch that I am?” I finally asked.

“Is all part of it. You’re not making it up. It’s a very real condition, but it’s relatively new on the scene so it’s not really well understood.”

The word ‘chronic’ in conjunction with ‘fatigue’ sounded like an accurate description of how I felt. I was strangely relieved. It was something physical, an actual disease.

“So it can be fixed, yes.” I was seeing a glimmer of hope for the first time in ages.

“Well… we can try vitamins… ah… we can try some new, experimental treatments like Chelation Therapy – it’s very good for the removal of heavy metals from the system and we’ve had some success with people suffering similar illnesses…” his voice trailed off and he started shuffling papers in my file.

“What do you mean?”

“Ah, what we really know about Chronic Fatigue is that you need a lot of rest. It’s still not well understood, so…”

“Rest?”

“Yes. If you want to get some semblance of a normal life back, rest is crucial and it’s important to learn how to manage your illness.”

“What do you mean ‘a normal life’? ‘Manage my illness’?”

“Nadine, you won’t be able to swim like you used to. It would be unrealistic to think your body could cope with that, but you’re pretty fit, so you might be one of the lucky ones. You might see some improvement in three, six months, but you know, most people struggle to get out of the worst of it for years. The research indicates that once you’ve got it, it’s there for good, but people have found ways of managing it with things like meditation, vitamin treatments, you know?”

No. I didn’t know. Too much talking. No swimming? No water? Struggle for years?

“We can help you with all of that, to try to get you back to school, able to concentrate for most of the day, get those mood swings under control. But it’s going to take time. And loads of rest.”

Time.

“We can help you with all that.” He could see the glimmer of hope fading from my eyes.

I didn’t want his fucking help! I either wanted my old life or no life at all!

(from Wobbles – An Olympic Story by Yours Truly, plug-plug!)

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