The highs and the crushing lows

CanberraME/CFS

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I haven’t written on here for ages. Christmas was low key and relaxed – it was good to spend time with my family, read some books and dress the dogs in costumes. But I also really struggled with feeling depressed around new year – another new year’s eve at home by myself not doing anything, another new year being ill without any progress, nothing fun planned for the year ahead because I’m broke.

Dog photography = highly challenging!

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Once I got back to work though it was almost immediately insanely busy, which is always a good way to avoid ruminating on things. We hold our biggest conference of the year in mid-February, and every year it gets bigger, and my involvement becomes more and more. I’ve been working on weekends, working a lot, but with a pile of work for ‘after the conference’ that just keeps getting bigger as well.

The conference itself went well as usual, and I even presented this year and won in our ‘three minute aid pitch’ competition, which was fun. But it’s so hard. I’m always trying to not physically overexert, then wondering if people are looking at me like I am just fat and lazy for doing things like using the lift instead of running up and down stairs a hundred times. I did something to my back so was in heaps of pain the whole time. And I was just physically exhausted. It felt like my body was burning. I would have to sneak in lie-downs in seminar rooms, sometimes falling asleep and getting marks on my face from the tough low-pile industrial carpet favoured by offices and universities everywhere. I would straighten my hair and try to look nice, but look like a frazzled trainwreck approximately 10 minutes in to the day because of running around to try to fix some crisis or another. The whole time I was also trying to work – to get media, to set things up, to run social media, to answer emails, to answer questions, to try to help people, to coordinate volunteers, to be chirpy and friendly, to ‘network’, to take photos, to make everyone feel welcome. I barely saw a handful of presentations at the actual conference. In the days leading up, I was trying to lead by example while doing crappy conference prep things like making lanyards and folders, repetitive tasks which left me in pain, because others seemed cranky about having to help. All of these things take a lot of energy. It’s my third conference trying to cover up my chronic fatigue, and it becomes harder and harder every time.

Have almost survived our annual conference but look at those dark circles! Napping on a seminar room floor! #mecfs

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By the end, I was dead and could barely walk. My sister had come to help for the conference, which I was so grateful for, and was staying for the weekend, but was thankfully as always understanding of my energy-crashing and it was nice to have her staying with me. We managed to do brunch, and go to the multicultural festival for a short while, but by the time I got back to work on Monday I was still exhausted and sick.

Everyone in our family LOVES FOOD.

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So happy to not be in the office this weekend hahaha.

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I kept pushing because I have a ton of work to do, but crashed big time today – perhaps not helped by getting a massage yesterday. It helped my aching back a huge deal, but seemed to push me over the big-time-fatigue-crash ledge.

So today I’ve been in bed all day, barely able to get out, and feeling miserable. When your body throws its hands up and says ‘I can’t do this’, it’s hard for your brain not to follow suit. And it’s hard not to worry and ruminate. If I can’t manage this, how can I manage other things? How can I recover from this properly when I have so many things to do and people chasing me down for things at work and outside work? How can I take a proper break when I am so broke and in debt and now my car is on its last legs and needs to be replaced? How will I ever achieve any of the things I want, in my career and personal life, when a two-day conference leaves me crippled? How will I ever be a proper grown-ass independent competent adult woman when this illness keeps kicking me in the balls, over and over again, no matter how hard I try?

I’m just really starting to wonder if it is worth pushing on things, when the come-down is so hard. But then what do I do? Be mediocre, lonely and bored? Go bankrupt?

Just so over it and wishing I could have my pre-CFS energy levels back. At the moment all these doctors are pushing me about my weight again and I’m feeling under all this pressure on that as well and feeling judged, but my biggest regret is the diet and exercise regime that caused me to get sick in the first place. Being several clothes sizes smaller for six months was not worth this. I just want my life and energy back.

2 Responses to " The highs and the crushing lows "

  1. M says:

    Always wanted to leave a comment but wondering why i never did. Anyway here I am… I’ve been reading your blog since your journalist days in Jakarta and am truly sorry with your health condition. What did your doctor say in the latest check up? Is there any improvement with the medicines he/she prescribes you? Not sure if are already but you may want to try plant-based diet? Or some yoga could perhaps help. I am sorry if this comes across as ignorant. I am sure you have tried lots of things to get better. I pray for you and hope you know there are still people out there who care and root for you. Big hugsss…

    • Ashlee says:

      Hi M, thanks for your kind comment. Unfortunately for ME/CFS there aren’t many treatment options at all. I’ve been to lots of doctors but there’s not much they can do. Hoping there’s more science soon that can help. Thanks again for your comment, and for being a long-term reader x