Flash Says…

Posts Tagged ‘spoonie

It’s been an odd three months, since my dad died. I’ve been wearing painkiller patches which have turned me into something of a zombie, making me sleep 14 hours a day. Last week I ripped off the patches and for the last few days I’ve woken naturally at 11am – a great improvement! I’m getting my life back on track. That includes resolving to blog here more often, too! So…

Now I’m almost back to my usual everyday state, I thought that I’d demonstrate what the “everyday state” for someone with Ehlers-Danlos Syndrome can be like. It’s a condition that people know I have, but unless you’re also affected it’s hard to fully understand. Let me explain by making muffins.

It’s 4pm. I think it would be nice to make strawberry and chocolate muffins, a treat for both me and my husband. I find a simple “foolproof” recipe and pop to the corner shop to pick up some fresh flour.

Of course, I need a sit down after walking to the shop (a distance of about 30 metres), a little rest for my knees and hips. At about 430pm I gather myself and go to the kitchen. I put out the ingredients and begin chopping the chocolate and strawberries. The chopping takes me 15 minutes, and I get backache after standing for more than 5, so I’m hurting and sit down for a rest against a specialist supportive chair.

This is a good point to introduce the concept of “being a spoonie”. Christine Miserandino’s magnificent Spoon Theory describes the concept of spoons representing energy. You might keep a spoon in your back pocket, or borrow from tomorrow’s allocation, but you always have a limited capacity and whatever you do will have a physical payoff. Or as I always used to say before I had a diagnosis, “the more I do, the worse I am”.

After some painkillers and half an hour’s rest I felt able to go and blend the ingredients. It sounded simple, until I had to add melted butter. Hang on, where did the recipe mention melting? Now I had to find a pan! However, all went well until it came to stirring the final mixture. The recipe suggested it should be done by hand, to leave small lumps. My wrist didn’t feel strong enough to stir such a stiff mix and I had to wear a wrist brace to finish the job.

At last I could drop the mixture into cases and pop it in the oven (using two hands in case a wrist wobbled). I had a lovely 25 minute sit down which I needed to recover from 12 minutes mixing! And then, as 6pm approached, a wonderful hot chocolate and strawberry muffin to enjoy!

My husband arrives home and asks “What’s for dinner?” At this point I realise I’m exhausted. I’ve used all my spoons making the muffins, and don’t even have the strength to cook pasta. My back hurts from standing. My wrists ache from stirring. So, guess what we both ate that night?

That’s what happens when you’ve got Ehlers-Danlos Syndrome! It’s a genetic collagen disorder, meaning the collagen in my skin, ligaments, tendons, every tissue in my body, is too floppy. My joints bend in ways they shouldn’t and sometimes dislocate. My gut misbehaves. Everything aches, and some bits of me stab in pain. But hey, there’s no part of my back I can’t reach (to scratch) so that’s alright, eh?

A few days later I made these double chocolate muffins “to use up the ingredients”, and they were perfect. To anyone who has the spoons to cook, I recommend them. After all, when it’s a choice between muffins or dinner, you want the tastiest recipe!


Flash Says – a regular blog by Flash Bristow

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