We’ve had a very trying weekend and things came to an explosive head on Saturday evening.
The Teenager: WHY are you so tired just now? WHY’S your face all red? WHY are you hugging the fan? Oi, WAKE UP! Mum, mum, mum, mum, mum, mum, muuuuuuuuuuuuuuuuuum. Can I have a Dominos?
Me: I’m awake. You’ve just had dinner so you can’t be hungry. And we’ve talked about this before. Sweetie.
Teenager: Yeah, you get…..tired…..and hot….and grumpy……and, I mean, like, I get tired and hot too. My X-box gets hot. The cat gets hot. And it’s summer, like d’uh. And I’m hungry all the time coz I’m growing. So ner.
Slammed door. Me, in pieces on the sofa.
How can I explain to him? I wrack my heat-addled brain, jot down a few points then fall asleep.
Later that evening, he thumps downstairs and I swiftly intercept him on his way to the fridge. We sit on the sofas. He slumps, like, whatever, working his way through two Müller Corners, a croissant and the lollipop he gave me earlier (the one I was keeping for later).
Anyway, here goes. Keep it simple. Ok. Heat intolerance – imagine you’re in a sauna and the door is locked. An hour later, exhausted and gasping for breath, unable to think clearly, you have to put the oven on and cook dinner. (at this point, The Teenager plays his trump card – ‘you could have called Dominos, dur’). Smug grin. I calmly continue; then you have to make a few phone calls, reply to some emails, do the laundry, feed the cat and water the plants. All the time you’re feeling hotter and hotter. The bits in your brain start to melt in the heat and send out the wrong messages and your body just doesn’t do what it wants to.
The Teenager: Oh. I get like that when I’m on the rugby pitch, for like, hours.
Me: Exactly! Imagine they won’t let you off the pitch to have some water. They’re pushing you to keep on going. You’re boiling.
The Teenager: Oh. ‘K. So why are you so tired. Tired, tired, tired, all the time. S’not fair. All the other mums don’t get tired. S’not fair, s’not.
Right. It’s not really tiredness like you know. It’s kind of the same as when I get hot. My brain (Teenager sniggers) gets tired out from working extra hard to keep sending the right signals so it gets tired more quickly than, say, your brain (snigger). That’s why I have to sleep a bit more, to rest it a little.
The Teenager: Uh, ok. Can I go now? Got friends waiting for me – X-box party. Paaaaaaaartaaaaaay! See ya!
Did I get the message through? I wander through the house, fretting. Until I come across my lovely, neat desk. Everything in it’s place. Except, under my goldfish paperweight there’s a takeaway pizza menu, topping choices thoughtfully highlighted by The Teenager.
Hi, another good blog, hope your feeling better. I know how you feel, I tried explaining Vicki’s MS and the effects that it had on her to my son when he was mid 30s. You could almost see it go over and through him, by the time he left the house he’s forgot. My daughter understood more even then she couldn’t quite grasp how serious it was.
It really is so difficult. Especially as to some people they don’t seem like symptoms at all!
Have you ever acted out the spoon theory with him? Give him some spoons and talk through his day, taking a spoon away whenever you feel you would lose one?
It’s a very effective visual representation of chronic illness, I find.
I hadn’t thought of that, great idea! Perhaps a more visual thing like you say might help describe it better. Thank you!