Where have I been?

It’s been a long time, and to be honest, I don’t know what to write or where to start. So much happened, and at the same time, nothing much happened at all. Just the usual.

Except that we celebrated Chanukkah.

We listened to the story of Judah Maccabee, we lit our candles, we ate latkes, played with our dreidels, shared presents and had a good time together.

Then there was this thing called Ehlers-Danlos.

At first I felt relieved, being diagnosed with EDS. I finally knew what was going on, and no, it wasn’t just in my head. I wasn’t being a sissy, and I wasn’t imagining things. The sleepless nights, the dizzy spells, the nausea, the pain, the fatigue, it finally all made sense. Heck, I didn’t even have to feel guilty about the condition of my teeth – which is rather piteous – because that too, is because of the EDS. Collagen is a funny thing. When it’s good, it’s good, but when it’s bad, strange things happen.

Now, don’t get me wrong: I’m still relieved. And I have fun sharing pictures and funny anecdotes with with my newly found EDS-friends. All the apparently strange things we can do with our bodies are perfectly normal to us.

Yes, we can tie our fingers in some sort of knot. And we’re perfectly comfortable sitting cross-legged, curled-up, or with our legs twisted around each other.

Most of us don’t like sitting in a chair the way our stiff friends do. You know, with our bums on the seat and our feet on the floor. Having to sit like “normal people” is pure torture. It hurts. I kid you not.

In fact, we don’t usually sit still for any prolonged amount of time. We’re fidgety. Because even sitting in the same pose for too long (like a couple of minutes!) makes our bodies ache. We shift our weight, we move our hands, feet, arms, legs. We fidget. A lot.

So there’s not just relieve. There’s also the realisation that this is forever. And it will get worse over time, rather than better. More pain. Even worse fatigue. I’ll probably have to get my teeth pulled. All of them, and frankly, I’m even looking forward to that. Because I’m so done with those horrid teeth of mine. Always something wrong with them, and I’ve often wondered, “Why still bother taking care of my teeth?” I might need yet another root canal tomorrow. Or next week. Or maybe yet another tooth will break.

There’s the hereditary part. Most EDS types are autosomal dominant. EDS hypermobility type, the type I’m diagnosed with, is no exception. This means that with every pregnancy there was a 50% probability that my child would inherit the EDS.

It seems I passed the EDS on to both my older and younger daughter. As for my second daughter, I cannot say, as she died when she was five, but suffice it to say she was severely disabled, and I wouldn’t be surprised at all if she inherited the EDS as well, and this was why her brain stem never fully developed. In which case the EDS killed her. But this is just my hypothesis, and I am no medical doctor. I guess we’ll never know now, as she’s been dead for almost eleven years already, so it’s really been too long.

Anyway, my girls will both have to see a medical geneticist to get diagnosed, and that will only just be the beginning. So I took DD-15 to our GP to get a referral.

DD-15 showed our GP some of her party tricks and freaked her out. That was fun!

Here’s the part that’s not so much fun: I’ve no idea how many doctors we’ll have to see, and what’s going to happen. There’s so much I don’t know yet. There still so much even the doctors don’t know yet.

So that’s where I’m at. I’ve got this diagnosis, and now I’ve got to figure out how to deal with all this EDS-stuff. Not just for myself, but also for my daughters. I got one answer, and a gazillion new questions. That’s the hardest part. The not knowing. I suck at that.

But here’s something I do know. I’m not going to let the EDS stop me from living my life and doing the things I want to do. I may have to find different ways to do things, but I can do that, and here’s proof: We finally emptied out that garage. Entirely.

Doesn’t that look wonderful?

We’re not paying to store STUFF we don’t even need anymore. I think that’s pretty cool, because now we can spend that money on something else. Something we do want or need. Something like the loft conversion, methinks.


About Liam

Poet, writer, aspiring minimalist
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4 Responses to Where have I been?

  1. Leah says:

    Thanks Susan! I would write you a nice, lengthy reply, but am far too tired right now. So let me just say that “Bermuda Triangle” sounds just about right to me. Hugs from me to you.


  2. Leah says:

    Thank you, Patricia.


  3. Susan says:

    Great post Leah. Your diagnosis has put you in a similar position to me and a lot of others: “I've got this thing, now I have to learn to live with it”. And it sounds as if you are succeeding, the garage clean out being firm evidence! Well done you. I so wish my DH would clean out our garage – I call it the Bermuda Triangle as anything that goes into the garage disappears forever! Good luck with getting all of your questions answered; I always have lots of questions for my doctor even 18 years after my diagnosis of Multiple Myeloma. But then I am very nosey and have to know everything. I cannot stand not knowing.


  4. This post was a beautiful description about coming to terms with living with EDS, have to say I loved it!


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