Monday, 19 September 2016

The worst of it

Often I'm very positive about my experience with glandular fever / chronic fatigue. So today, because I've had a crash into the glandjy-pit-of-doom again and I'm totally over it, here is a post about the worst of it. (WARNING: This post is about Doom, Gloom and Shitful Flueyness)

Some people describe the crashes of chronic fatigue as feeling like you've hit a brick wall, and then sometimes the bricks fall down on top of you too.

Except I wasn't going nearly fast enough to have hit a brick wall that hard.

I was just minding my own business, dawdling along, resting, carefully planning and limiting my activities, asking for help for things I couldn't do, and only gently trying to feel where my boundaries were, every now and then.

I didn't hit a brick wall, a f***ing brick wall came out of nowhere and slammed into me!

When I first got fatgiuey-sick this year (the 3rd time), and last year (the 2nd time), I spent a lot of time contradicting those who said they were sorry for me, assuring them that I didn't really mind having glandular fever. I actually kind of liked it. It was like a forced holiday in slowtown. A somewhat inconvenient holiday (I had heaps of plans that I had to abandon), but apart from a short period of feeling fluey, it was really not unpleasant. A time for reflection, sitting still, watching clouds change on the mountain, noticing small things, soaking up the sun, and being forced to be the opposite of what our cultures tells us to be. Unbusy.

But the first time and the second time I got fatiguey, I never doubted that it was just a holiday. Both illnesses were about 4 months each (between noticing something wasn't quite right, and then again able to charge about and ride my bike up the long, steep hill I live on without stopping). Neither time was I given cause to doubt that I wouldn't regain my energy, my health and my life.

This time, however, this 'holiday' has turned into more like long-term, down-and-out unemployment. And sometimes turfed out of my home and beaten-up to lie bruised and battered in a stinking ditch unemployment.

Not literally of course. I'm sitting in my nice house that I don't struggle to afford because of housemates, savings from summer and centrelink. I'm surrounded by a supportive community who bring me food and flowers. Two wonderful friends have even come to just sit, read their book and pat my head during this latest crash, to keep me company and abate my loneliness, even though I can't talk.

But the 'turfed in a ditch' metaphor explains how shitful the crashes can be. During a crash I can't talk to or even smile at housemates. I can't do basic human things like deal with standing upright and dealing with being in the presence of more than one person at a time. I become a subhuman zombie, slumping along to the kitchen repeating “food, water, tea. Food, water, tea” to myself, so I can remember why I got out of bed. Its not that unusual Everybody gets the flu, and that's what its like. Except I haven't felt healthy since March, and during that 6 months I've had three major 1-2 week fluey descents into the pit of doom, and countless minor ones. I'm really really over it.

Between crashes I meander on alright for a bit. Perhaps I start to save up a bit of energy. Feel okay. Enjoy myself sitting in the sun and feel grateful for the opportunity of slow time. Maybe one day, I even start to feel a lightness and spring in my step, and begin to feel hopeful. Then bam, a brick wall comes out of nowhere and slams me back in a stinking oozing pit, robs me of all my carefully saved energy, and kicks me in the chest for good measure. I can't fight it. There's nothing to do except lie there, and wait until it passes. Wait until the shit drains away. Wonder how long it will be. Wonder if I'll ever get my health back. Wonder how many times I'll get slammed down again. Wonder if this time I have been stripped back to my core enough. Is this the rock-bottom from where I'll make my recovery? Is this the flare-up of sickness that will stimulate my immune system to actually do its thing and get me healthy again? Or will I just get weaker, with each further crash, fall deeper in the hole and lose my strength and capacity for recovery.

Chronic fatigue isn't the worst possible thing ever. It doesn't kill you, and I don't have the worst version of it. Be assured that, whether it is helpful or not, I have read far more horrendous tales on other peoples' blogs!

But it is really shitty, losing your health and not knowing if or when it will come back.

I am starting to feel like I'm on the other side of this latest crash (I'm able to type on a computer today). But..... I just don't trust my body any more. I am feeling hopeful about tomorrow and crawling out of this ditch. But I know that in order to avoid being disappointed, I need to let that go, and just feel grateful that today is okay.

Today is okay. Today is okay. F*** chronic fatigue, but today is okay. 

(NB. I haven't drawn a picture for this one yet, and googling "lying a ditch" turned up some pretty ugly results. Much uglier than chronic fatigue. However googling "shitty ditch" did come up with this website, if contemplating people worse off than you helps [I tend to think it doesn't, but anyhow]. Here's some of the shittiest jobs in the world!  

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