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Neuro-Spicy with a side of EDS

Photographs are a funny thing these days with filters and AI; you never know what’s real and what’s fake.

I often post pictures and get a lot of comments on how young I look. It happens a lot. I admit to playing around with AI with a couple of pictures a while ago, and I’ve also done some cute pictures of our dogs…just for fun.

But other than that, the pictures of me are unfiltered pictures of me. Yes, I know I look young for my age, but it’s truly not all it’s cracked up to be.

My youthful appearance comes from a genetic condition called Ehlers-Danlos Syndrome.

I’ll tell you all about it, but first, I have to back up to 2023 to give you the real picture. Bear with me, and I’ll get you there with the whole story.

First off, menopause is a bitch. I’m not talking about hot flashes (I wish that were all this is about); I’m talking about the hormonal changes that hit your body and cause havoc. Sometimes, these hormone changes have such a big impact in your body that they bring other issues to light. That’s what happened to me.

I was instructing yoga at the time. I’ve been a practising yogi for much of my adult life and thoroughly enjoyed the stretch and the mental clarity of each session.

My yoga sessions that have always relaxed me and made me feel great, but now suddenly were the cause of headaches and major joint pain. It started slowly, so slowly that I didn’t even know what was happening until I was smack dab in the middle of it. My relaxation tool was suddenly hurting me instead of helping me heal.

I also noticed that my balance was off; I was fine when I was moving or walking, but when I tried to stand still — doing tree pose, for example — instead of being that tall and strong tree, I was wibbeldy wobbeldy, and I didn’t know why.

Geoff also noticed my unsteadiness at Costco, of all places. We all know it’s a fine place to run into people you haven’t seen in dogs’ ages; a quick chin wag in the aisles, a hug and then you’re off again. Only as I was standing still, I was off balance.

Geoff noticed the odd way I was standing. I didn’t even realize it, but I spent all my chat sessions either leaning on him or a nearby display. Or if nothing was leanable, I adopted a tripod stance — trying to stabilize myself and balance with my feet. I began to notice that I did this a lot.

About that same time, I realized that my hand strength was gone. I used to be the girl who could open any jar. I had a grip like a trucker. Suddenly, not only could I not open those jars, but fiddly little things were no longer friendly to my hands. Pop tops and pull tabs became my enemy (noting here that I’m very thankful for Geoff and his help and support!).

I knew something was happening but couldn’t figure out what was wrong. My body was failing me, and it didn’t make any sense. I was scared but was not saying anything to anyone. I got really quiet.

On a seemingly unrelated parallel, I was watching a popular TV show in which a character who was known for being chronically late and disorganized was told to “get your ADHD under control!”

I worked in a hospital for years and, luckily, wasn’t one to self-diagnose based on other people’s symptoms, but this one struck close to home. Knowing I was chronically late and disorganized, this resonated with me in a big way. I set in to research and was astounded that I was quite possibly a person with undiagnosed ADHD.

It shook me. I immediately made an appointment with my GP to discuss this. Anyone who knows me well knows I’m a research fiend. By the time my appointment came around, I was going to be well versed in all things ADHD so I could thoroughly discuss and understand.

I stumbled upon the connection by accident. Do you have ADHD and are very bendy and stretchy? Quite possibly, and yes, definitely. Do you have youthful and soft skin? Yes, I do. Are you double-jointed? Yes. Do you feel fatigued? Most definitely. Do you often have joint dislocations? Yes.

The more I read, the more it made sense: Ehlers-Danlos Syndrome. I fit the description to a tee.

Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder where your body produces faulty collagen. It’s an inherited disorder that affects the “glue” that holds our bodies together. Symptoms include being overly flexible or having stretchy or youthful/fragile skin that often doesn’t heal well.

Connective tissue in most people works like elastic bands; when you bend a joint, it stretches, and then when you bend your limb back, it automatically snaps back into where it’s supposed to be. With EDS, your ligaments are more like Gumby; they stretch beyond what’s normal and never quite seem to go back to their original shape. This makes the joints hypermobile.

Because your joints are hypermobile, the muscles have to work extra hard to keep you upright, and it’s utterly exhausting.

There are 13 types of Ehler-Danlos syndromes (EDS), with hypermobility being the most common. It affects the skin, joints, ligaments, and blood vessels. There are theories that beacuse we produce faulty collageniin our body, we also produce  faulty proteins in the brain, which would most likely explain the co-morbidity (or connection) to ADHD.

Time passes, and by the time my doctor’s appointment arrives, I’m armed with a battalion of questions, and I’ve listed off my symptoms and relevant background information. I’m prepared. We discuss.

She explains that oftentimes, the hormonal change with menopause wreaks havoc with our bodies, and that seems to be the case here. The EDS that has been with me my whole life suddenly has become problematic because of the hormonal shift. It’s also driven my (yet to be officially diagnosed) ADHD symptoms on bust.

She also explained that there are many late-diagnosed women with ADHD. The medical world had been focusing on the hyperactive boys who acted out, and they totally missed the girls who were daydreamers. The girls who spent their whole lives walking into a room and carefully watched those already there. Then, they took on the role of how they thought they should be to ‘fit in.’ These are high-functioning and masking women.

She sets me up with the necessary testing and sends me off on my merry way.

The diagnosis took time, but luckily, the extra time helped me process it. My ADHD was confirmed and is highly likely to be AuDHD. Yes, Autism. They are quite confident that I am autistic.

It was a lot to digest and it threw me for a loop. I felt as though I was flawed, in body and mind. In particular, the autistic part of the diagnosis bothered me.

My new diagnosis brought to light every single conversation that had ever gone awry over the years and, with it, dozens of mean girls saying, “I knew there was something wrong with her.” I grieved who I thought I was. I mourned the loss of who I could have been if I was diagnosed earlier. So many opportunities lost, so many struggles that didn’t have to happen.

It wasn’t until I googled famous autistic people (Albert Einstein, Charles Darwin, Emily Dickinson, Bobby Fischer, Bill Gates, Sir Isaac Newton, Nikola Tesla and Elon Musk, to name a few) that I realized I was in fine company. I realized that if it weren’t for autistic people and their very creative minds, many of the inventions we enjoy today would not exist. Autism doesn’t mean stupid or flawed. It means different.

Now, I look at it with grace and acceptance. I realize that my brain is indeed smart and also happens to be wired very differently than most. It’s a troubleshooter’s brain, a creative brain. I am a progressive thinker.

The takeaway?

Yes, I have youthful skin. It comes with a side of weird and awkward.
Yes, I’m exhausted.
Yes, I hurt all over, every day.
Yes, I’ve spent my whole life masking to fit in.

I’m still not comfortable in crowds.
I know that many of you don’t like me and don’t even know why (hint: it’s the Autism).
I know that my mind works differently, and that’s okay.

.

Now I finally know why. It’s time to take off the mask and be me

7 thoughts on “Neuro-Spicy with a side of EDS”

  1. Holy smokes girl that’s a lot to process! I think you’re amazing and kick ass and love the result of all the components that make you ????

  2. Bobbi, awesome they have the diagnostic tools to enable you and others to understand their neuro-diversity and be able to embrace and accommodate it. You are remarkable in so many ways and much admired by me and many others. If I did a quarter of what you achieved in the run if a day I would be fatigued all the time. You keep going sister and I do hope you get relief from the terrible joint pain. The autism spectrum is a grand place to be!

  3. Amazing story by an amazing lady! Very well explained. Sorry that it’s so painful and takes up so much of your energy.

  4. Lovely to see you today, if only for such a short chat. Then I get home and read this. Well now! Ain’t that something! That’s a whole lot of processing for you, and Geoff. I think there are many, many, many, undiagnosed cases of ADHD, Autism, and many more things. The diagnosis may or may not be helpful to you. The understanding and acceptance are probably the most beneficial. Hang in there!

  5. Cherlyn (Sheri) Slaney

    What an absolutely incredible story and you are one incredible and classy lady. You keep doing ‘you’ and we will keep appreciating you. BTW, your new cookbook is fabulous.

  6. And how WONDERFULLY DIFFERENT you are!
    You and I have never met, formerly, but we were acquainted at AANL art exhibit many moons ago. I have been an admirer of your work all this time.
    Given all of your recent medical revelations I am so happy that you have the support you need. Coming forward and sharing your health journey tells me you are a very brave and strong woman. I wish you all the best in the future. Go be you, Bobbi Pike!!❤️
    God bless.

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