Oh hi 2016.

LifeME/CFS

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2016 is here. On New Years Eve I fell asleep at 10.30pm, and only half-woke to the sounds of the family dogs rhythmically barking at fireworks at midnight that were inaudible to me, but clearly not to them.

After a couple of weeks of doing not-very-much at home over the holidays, I’m back at work. I spent the few days between Albury and work trying to organise my wardrobe, which I had been meaning to do since before getting sick. It was really slow going, but it came with a quiet satisfaction that I would be starting the year with tidy organised shelves at least, and there was some sort of cleansing feeling from purging several grocery bags of clothes to charity bins, and several others to the bin (…mostly black leggings with thigh holes!).

I worked a half-week on my first week back, which was a good idea. I still felt human-ish by that weekend, and replanted all my herbs that I had killed through neglect last winter when I was cold, achey and frankly very depressed about my illness dragging on. Hoping I can keep them alive this time, a small goal for the year. But by the next weekend, a full week of (part-time) work, a quick clean of the bathroom and some vacuuming, and it was crash time. Didn’t even make it to February without a big fatigue crash. Three days in bed.

New year, same problems.

It’s kind of hard to start a year when you can’t really pinpoint things to look forward to, or even feel that there is much of a possibility of good things arising. At the beginning of last year, I thought I would only be sick for a little while and still thought that maybe I would get to do the travel I had planned and so on. I had things I was looking forward to, even though I missed out on many of them.

At the beginning of this year, I’m starting to feel like I am going to be sick for a long time. Maybe indefinitely. I don’t know, and nobody can tell me anything. Because I don’t know anything, I can’t plan anything. Or I can only try to plan things for sick-me, which is not the life I want.

In some ways this should be getting easier after nearly 18 months of being chronically ill. I should have it all figured out. But I still don’t feel like I have.

I learn things that I can’t do anymore all the time. Dance around a bit (dizzyness). Go to Ikea (extreme fatigue even during a quick visit–the store is full of chairs and sofas to take breaks on, yet it was still absolutely exhausting). Tolerate noisy places and crowds (makes me exhausted and somewhat nervy even though I used to thrive on noise and crowds). Go to the local swimming pool and move around a bit (fatigue crash, shaking hands and bad arm pain). Sit in the sun for too long (rash and dizziness).

It feels like I am continually learning things that I have to exclude or limit, but am still at a loss about what I can actually do. Hopefully those things will start to make themselves clearer this year. Or hopefully it just goes away.

 

IKEA: nice to have in Canberra now, but a lot of exhaustion for a Raskog trolley and some meatballs.

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