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
Thanks for writing this. It made a few of my own emotions make a bit more sense. I understand where you are coming from with this. Now just to make the people around me understand.
ReplyDeleteThanks for your comment. I'm glad the post helped you with understanding your emotions, and all the best with trying to help those around you to understand. It's really hard to communicate all of it sometimes!
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