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Ehlers Danlos Syndrome explained with muffins

Posted on: 2011-07-21

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!

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10 Responses to "Ehlers Danlos Syndrome explained with muffins"

Thanks, I have a few friends with EDS and now I understand it a little better 🙂

“the more I do, the worse I am”.

This!

“The more I do, the worse I am…”
Ooooooo…..living this in spades today. Been up since 4:30am and am so tired I’m shaking. Pretty sure I’ll be crashing into utter suckage tomorrow.
So happy to meet another Bendy Blogger!

I’ve been trying to explain “The more I do, the worse I get” to my lung consultant for 6 months now. There’s a lot of bits missing from my cutlery set too!

Hi There I loved your muffin story. I have EDS with the most chronic and constant pain everyday and now I am so very limited in what I can do. So I know what you are going through.But we go on It would just be nice if people would try to be a little more understanding and not to think that just because we may look well that there isent something very wrong and very painful going on in our everyday lifes. ..

“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?”

I love it! I sometimes have to cling to little blessings such as that as well 🙂 Cooking for my man and I is one of my favorite things….but you’re right, sometimes my culinary ambitions don’t always match up to what my hips, kness, back, stomach, and muscles are willing to endure. Great post.

4am in the morning and my old enemy EDS has been at it all night so cant sleep once again. All i did was try to go for a short walk yestrday. The more I do the wores it gets — We all know that one. off to cope on Wensday

I’m sorry. I know the feeling… you try to do something and pay for it later, usually it was something trivial that I tried to do and I end up going “hey, body, this isn’t fair!” If I drink lots of alcohol I sleep deeply enough to avoid the pain but that’s not really a good solution, is it?! If I don’t drink in the evening then I wake so often in pain and have a terrible night’s sleep, it’s like a punishment for being good! Can’t win. Hope you have a better day today.

I uesd to drink alcohol to try and stop the pain, but in the end I had to drink so much which was creating other problems. So I am back at the pain managment hospitol trying to get some more ides. What a crazy condition we live with.

Philip

Indeed. I do drink alcohol to help with the pain but since a close family member died of liver failure, I don’t like that solution…

So far everything that is prescribed either doesn’t work well enough or makes me a zombie, but I am still trying to find a solution.

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