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ME/CFS Blue Ribbon Awareness Day/Week

As many as 180,000 Australians directly affected. Around 1 million Americans. Possibly 17 million worldwide. Classified by the World Health Organisation as a neurological disorder. Significant enough that the Red Cross won’t accept blood donations from sufferers. Recently reported in TIME magazine, recently acknowledged by Obama. Recently linked to a retrovirus (XMRV). Can be as debilitating as M.S. or late stage aids. And there is no cure and limited treatment available.

It is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome awareness day (and whole week, actually).

So we already know the facts and the confusing and often conflicting treatments that are available, and we know that the name chronic fatigue syndrome should have been long tossed out the window given that fact that chronic fatigue is a symptom of pretty much every ailment that exists, while ME/CFS is a specific illness that meets a strict criteria.

So rather than rehash all those facts even further, what does this all look like? In reality, in real life?

It means hitting the pause button on life. Indefinitely. And then fading into the background.

Living with someone who suffers from severe ME/CFS, it is easy to lose sight of what’s normal. You forget that it’s not normal for her to collapse on a weekly basis. That it’s not normal for her to be thrilled when she can manage a walk all the way to the letterbox and back. That it’s not normal to see her in constant pain, 24/7. That it’s not normal to have to plan an outing weeks in advance to make sure she will have the strength; and even then, no promises. It’s not normal to see her robbed of things that are normally taken for granted – like ability to eat most foods, socialise, do the things she loves.

When someone else close to me first got the illness, of course I didn’t realise. We didn’t even know what it was. The flu. Of course. She would be better soon. Just 16. Never mind that she could barely eat, and just…didn’t..get..better. And now 11 years later, the flu is still there. But worse. “Just chugging along,” she said, living daily with the aches and fevers and exhaustion, waiting for a long promised treatment that is yet to materialise, yet to bring hope. Life on pause. In limbo.

The courage of these sufferers astounds me. Neither of these people I love complain. Ever. Not even like me, even though they have much more of a right to do so having been robbed of so much; the little everyday things that people take for granted. Like popping down to the shops – just for fun, and without it causing aching legs and a throbbing head and sending your heart rate over 150. Like working full time. Like popping around to see friends for coffee.

As much as I try to ignore what this illness has done to my family and those I love simply because sometimes it’s easier to choose not to see, when I stop and reflect…this illness is real, it’s impacts are hugely significant not just on the sufferer but on their whole family, it is isolating, and most sadly, it is hidden.

So today I am wearing blue. For awareness day. To stop myself from continually ignoring CFS/ME and avoiding questions about why my mother is so ill because it’s simply so hard to explain. In the hopes that finally some real research will be done regarding these recent serious developments that have emerged in the field. That finally the whole ‘yuppy flu’ sterotype can be put behind us and GP’s can realise the reality of this disease, and the thousands who go undiagnosed can find sanity.

If you want to know more, I recommend ME/CFS Association of Australia. Or you can read my previous posts on this issue.

And on a lighter note, this Sunday, I am going to hear someone called Dr Butt speak on Faecal Microbiology in Patients with ME/CFS. Now that, is pretty funny.

Semuc Champey

Isn’t it wonderful when you stumble across something that triggers a sweet memory…(especially wonderful when it enables you to procrastinate from writing that assignment for just a few more minutes!)…well this morning, Semuc Champey found it’s way through a newsletter into my inbox. Care to wander down memory lane with me for a minute?

Semuc Champey. 14 beautiful natural pools where somehow the wild rushing river has decided to take a break and run underground, leaving above these natural limestone pieces of heaven providing a true gem hidden in the tropical mountains of Guatemala.

Semuc Champey. August 2009. The day beforehand was a crazy day where tour buses hadn’t arrived where and when they were supposed to, and then broke down several times along the journey, oh and also left me stranded in a town in a middle of a protest…so I took my life into my hands and hitchhiked. (yes. I know. never again. it was exceptional circumstances.)

But on this day…things ran smoothly. Rudy, our guide, was absolutely beautiful….just one of those people who radiates happiness and kindness, I’ve never forgotten him. Maybe that’s cos he was constantly complimenting my shocking spanish. Hm. Anyway.

The bus rocked up on time. We piled in. We drove and drove and drove but at last after several hours we arrived.

Arrived at this beautiful little hut secluded in the jungle, where we made ourselves comfortable while our guides prepared our vehicle for the next part of the journey….we would need to 4WD this part!

Aah…but how will 12 people fit in a 5 seater 4WD? That’s ok…stick the Brits and the Aussie in the boot…and the guide on spare tyre out the back! Yes, there was much laughter.

But our cramped journey didn’t last long. The 4WD decided it didn’t like carrying 11 people and died about 500m up the road. Rather than stand around and wait while they tinkered and toyed with it, we decided to get a head start on foot. And wow…totally worth it. Fields of maize blended in with the jungle as we hiked up and down these beautiful hills; for some reason, we decided that the Sound of Music would provide a perfect soundtrack for our journey so…sing it we did (not sure the spaniards with us appreciated this as much!).

We came around another bend and down a steep hill and there was the beautiful, spectacular river. We’d finally arrived at the entrance of the park. We took a break at another hut, snacking on those bags of rich fresh fruit that Guatemalan vendors make so wonderfully (yes I know, massive parasite risk! but they are so good..), being stared at by a creepy one eyed dog.

Time to hike some more! Rudy complimented me on my spanish again. Yay. We swapped words…”how do you say celoso in English?” and “Como se dice steep en espaƱol?” as we made our way into the jungle.

Semuc Champey. There it was. Beautiful, bright turquoise, deep in the forest; aside from the path and one change room, relatively unmarked by humankind. We took our turns getting changed in the pitch black change room (drop toilet anyone? never mind we’ll just hold it.) and then marched out onto the limestone ledges, ready to plunge into the pools below. Rudy made me jump first. Must be because my spanish was so good. Ha.

So we jumped. And we swam to the edge, then jumped down to the next one. And swam again. And I remember floating there, looking up at the forest canopy above and around at the turquoise water around me and just feeling overwhelmed with the serenity and immense beauty of this place. It felt so safe.

Safe, that is, until Rudy told us it was time to climb down a waterfall. He took a room and looped it around a rock, then threw it over the fall. You just climb down, then back up, he said. I had a good look, for about a second, before politely declining. I didn’t feel like dying that day (maybe when I actually have upper body strength I will go back and climb the water fall).

And that was Semuc Champey. More hiking (Rudy offered to carry me when I got tired. But pretty sure I was taller than him so kept at it), a tropical downfall that left us drenched (just after we dried off from the swimming), some mystical caves (thousands of bats. no kidding. pretty amazing), and a long drive later, we were safely and exhaustedly settled back into our hammocks in Coban.

If you’re in Guatemala, definitely worth the trip to Semuc Champey. And be sure to ask for Rudy and compliment his english.