Two years and then some

ME/CFS

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At the beginning of November, my two year mark of living with ME/CFS ticked over. At the time, I considered writing something down (similar to the piece I wrote at the one-year mark). Some sort of profound musing on what two years of chronic illness has taught me.

But you know what? I was too tired. That week, I was really exhausted, bloated and ill. The expensive integrative GP had prescribed me some kind of pancreatic enzyme that ended up making me progressively sicker and more tired for the two weeks I tried them, and then caused gut problems for more than a month afterwards.

And then Donald Trump won the US election which was just so anger-making.

So I just didn’t write anything.

Me, two years in with #mecfs this week. It’s still hard. I still struggle with the missing-outs, the bouts of extended loneliness and isolation when I’m too sick to do things. The boredom of being too tired to be entertained while just staring at the stucco ceiling in my bedroom. I still have days where I cry about it or feel mad. But I’m also proud of some of the things I have managed to do despite it. Sometimes I feel like I’m doing a great job of covering it up, sometimes I have to lift the lid and ask for help, sometimes it is etched in the dark circles under my eyes or the way I walk and isn’t an #invisibleillness at all. I wish it hadn’t made me gain so much weight, because I feel gross and it makes it harder to be taken seriously by some doctors, and that I had enough energy to be more social and have hobbies outside of work. Two years in though and I’m really starting to wonder if it is going to go anywhere – if I hit year 3, or year 4, it might be time to start planning a whole life with this. The support of my friends and colleagues, and especially my family, has been a life raft during those times when I’m really struggling. So thank you xxx #cfs #chronicillness #spoonies

A photo posted by Ashlee Betteridge (@ashbetteridge) on

Then I went through a bad patch on the ‘dealing with it’ front – was feeling anxious some days, not sleeping well with stressful dreams, and feeling really down on others, so down I just wanted to sink into the ground and disappear. So when that was happening, I couldn’t summon the strength to concentrate or string sentences together. So I just didn’t write anything.

Now, because things have been a bit more social in the past couple of weeks as the year winds down, I haven’t felt like writing either even though I am feeling less blue (though still plagued by stressy nightmares), because I’ve been busy, and then too tired from being busy.

Today though, I am writing because I am completely physically knackered after two Xmas celebrations two days in a row (which were both very nice and enjoyable, but standing a lot and talking a lot and preparing food and so on exhausts me). Then today I have been trying to clear out my cupboard of clothes that don’t fit anymore thanks to CFS-related weight gain, which is physically and emotionally tiring. I’ve only gotten halfway through but now my back, shoulders and arms are hurting a lot, so I’ve had to stop. So I am writing, though my fingers are already starting to ache a bit from typing. But I’m looking around wanting to finish the closet clean out, wanting to start packing to go away for Xmas and to tidy instead.

So I guess the profound realisation after two years is: you can only do what you can do. There’s so often curveballs that derail the best intentions. But on most days (if not every day) I still always want to do more, and that is often one of the hardest parts. This illness is definitely never ever one that is about a lack of will or desire.

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