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

Hungry, Hungry Hippos

I think most of my generation in New Zealand grew up watching repeats of Friends and The Simpsons every weeknight. In most situations you can make a reference to either show, and everyone in the room will have seen the episode so many times themselves they instantly get what you mean. Personally every time I hear an oven timer go off, I feel the urge to yell: “My Fajitas!” and when my hair gets particularly curly: “It’s the humidity!” And I know every time one of my friends mentions Hungry, Hungry Hippos that what they’re really playing is the waiting game.

It’s possible another diagnosis may be on the horizon for me. Nothing confirmed yet; it could turn out to be absolutely nothing. I wasn’t going to post about this, until I knew for sure either way but then I realised “the waiting game” is a big part of living with chronic illness. Whether it’s test results, approval for new medications, treatments to start working, or answers to the cause of new symptoms, it feels like we’re always waiting for something.

I went to see my GP to get some forms filled in last Monday, and in the course of the appointment, I asked her to check my blood pressure. I was pretty sure it was low. I’ve been having more and more dizzy spells and headaches lately, especially upon standing up from sitting or lying, and I’ve had a couple of unexplained falls as well. It was, as I suspected, low but we were a little surprised by how low. At the time it was taken, I was feeling fine which suggests it may be dipping even further when I’m having dizzy spells. My GP suggested I should start drinking coffee to raise it, and when I mentioned I’d found drinking water with added electrolytes helped, she checked my blood test results and found my electrolytes levels are also low. I think there are probably a lot of reasons this can happen, but the one that my doctor thinks it could be is Addison’s disease. I don’t know too much about it, and I’m resisting to urge to google anymore because the Wikipedia page freaked me out. From what I have read, I do have all the symptoms, but given that they are all fairly non-specific symptoms and could be attributed to any one of the other conditions I already have, that doesn’t really mean much.

Autoimmune disorders tend to run in packs, so after you’ve been diagnosed with a few it’s not really all that much of a surprise when another one is added. Even so, I have to admit the possibility of this one has unsettled me a little, especially as I hadn’t even considered anything new might be wrong, before my doctor brought it up. My GP said it’s quite hard to diagnose, and she’s on leave for the next month, so for now it’s just extra blood tests, self-monitoring of my blood pressure... and playing the waiting game.

Whenever you’re waiting on something the advice everyone gives is don’t think about it, but as we all know that’s like trying not to think about elephant when someone tells you not to think about elephants. Still, I’m doing my best not to worry about it at least.   

The waiting game sucks. I really need to get Hungry, Hungry Hippos.

Thanks for reading 
Little Miss Autoimmune