Forgetting You're Sick



Me and Rebecca having High Tea
(photo taken by our other lovely friend Andrea)

My lovely friend Rebecca from In My Body and I were talking on Facebook chat the other day (at 2am – neither of us could sleep) and this is part of the conversation we were having:

Me: Do you ever feel like sometimes you are so busy being sick, and managing living being sick, that it's almost like you forget you're sick until there is something... (usually something quite small) that you're irritated about not being able to do. And when you're sitting there being irritated about not being able to do it, you suddenly remember all the other things you can't do and it's like you're "remembering" that you're sick?

This was something that I felt very odd about saying. It sounds so stupid to say that I forget that I'm sick when it's a constant and ever present factor in my life. There was a part of me that wondered if Rebecca was going to come back with a comment like "Uh, no. Not really." But this was her reply:

Rebecca: I hear you! I sometimes also get this thing were I have been sitting still and I'm not in much pain and there is energy (or maybe it's motivation) in me to get up and do something and so I get up and go to do something and it's really hard to do and I'm like 'What's wrong with me? I'm so unless at this' and then I remember I'm sick.

It was such a relief to realize that someone else felt the same way I did. We went on to talk about the fact that we both have dreams where we are not sick, but are still experiencing pain. Our dreaming brains have invented monsters, attackers, insects and (really unprofessional) surgeries to explain the sensation of pain without having to admit to ourselves that we’re living with chronic illness and disability. Similarly, I often wake up in the morning and panic because I can’t move. My brain strays to thoughts of strokes or paralysis before I finally remember that this happens every morning. My joints are just stiff, not paralyzed, and will eventually start moving again once I calm down. 

But yet, it’s still so easy to forget it all in the in-between moments. We’re forever healthy people trapped inside sick people’s bodies.

Sometimes I think living with a chronic illness is like a prolonged grieving process. You lose the ability to do something or develop a new symptom, grieve about it for a while, learn to adapt find and that life is not so bad, forget about it for a while, then remember it and start the process again.

While of course I would never wish for anyone else to be in pain or experience the frustration of forgetting/grieving about it, it was almost exciting to realize that Rebecca felt the same. And that’s why I'm sharing this here. If you’re busy swinging around on the roundabout of repeatedly “forgetting” and “remembering” that you’re sick, try and also remember that you’re not alone. There’s a least two of us that feel exactly the same.

Thanks for reading
Little Miss Autoimmune

Sick-Cycle Carousel

You go through many cycles with chronic illness. Flares. Remissions. Good days, bad days, round and round and round.

I knew posting about things being good was a bit of a risk. There’s always part of me that thinks The Universe is going to go “Oh, you thought things were going to stay good? Haha, nope! Here’s a flare.” And that did kind of happen a little bit after I posted about how well things were going.

A couple of days after writing this post, I had my monthly blood test and my labs were out. Considering my labs are usually normal even when I’m badly flaring, it was a bit worrying. Since then, most of the things that had got better stayed better (Yay!)... but some other new symptoms popped up*. And so the cycle goes round and round and round.

Another cycle that will be familiar to many others with chronic illness is the grief cycle.

I’ve been struggling quite a bit with dropping things lately. I’m not entirely sure what’s causing it – my guess would be a combination of pins and needles, tremors and raynaud’s. Whatever it is, I’m decidedly more fumbly that I used to be. And my poor dishes have not been faring particularly well! Last count, 1 glass, 2 bowls, 1 mug, 1 dinner plate and 1 side plate have fallen victim to my hands. Plus a few other things are now either chipped, or have learned to bounce. Even when the crockery itself doesn’t break, just having the contents go everywhere can be annoying enough. I really wasn’t sure whether to laugh or cry when I dropped an entire glass of almond milk into an open drawer. Don’t be fooled by the almond part – after a couple of days, it smells just as bad as normal milk!  

So, after being upset about this for a while, I got this pretty awesome drink bottle (or three of these drink bottles to be more accurate.) And on the day I bought these, I was really happy, as I now had a solution to this problem. But then I had to grieve for a while, because finding a solution made me think again about the fact that there was a problem in the first place.

Similarly, I’ve been avoiding ordering drinks in cafes, or having anything other than water out of my bottle at other people’s houses, due to not wanting to make a mess or break other people’s stuff. I was thinking about this today, and I realised I could easily ask café staff or friends to put drinks in a mug or paper takeaway cup. I might get a few awkward questions as to why, but with Molly-Stick around I get awkward questions anyway.  It’s not a perfect solution, as even with the handle I do sometimes drop mugs, and takeaway cups are hardly environmentally friendly, but it’s a solution none the less. And so again, I had to grieve about the fact that I had a problem that needed a solution.

Remembering that it is a cycle does help. Bad days suck, but good days are part of the cycle too. And the cycle of grief, it is a bit of an emotional rollercoaster to be upset by both the problem, and the solution to the problem, but I’m kind of an emotional person. If I wasn’t getting upset about that, I’d probably be crying watching Shortland Street, or something equally ridiculous (by the way, totally cried watching Shortland Street last night.)

There’ll be good days, and there’ll be bad days, and I’ll cry about stupid things. But sometimes I’ll laugh about stupid things too. With the almond milk, I settled on laughing.

Thanks for reading

Little Miss Autoimmune

*I will post properly about this at some point, but still a bit too close to it to talk properly about it yet.