I’m a Caregiver – and I have a Chronic Illness

I am taking off my invisibility cloak – I have EDS (Ehlers-Danlos Syndrome)!

So, what does it look like to be a caregiver AND someone with a chronic illness?

I’ve always known that I was hypermobile. However, my symptoms have really flared up over the past 3 years (which just so happens to coincide with the timeframe of the start of Soraya’s decline...)

It first started with a massive increase in grinding my teeth at night, to the point where I would have constant TMJ pain, headaches, and limited ability to chew. Then came the jaw dislocations. To cope with my pain and help with the function of my jaw, I’ve had two jaw surgeries, Botox injections, several months of PT, massage therapy, and acupuncture over the last few years.

Recently, I also started having joint and hand pain from carrying, lifting, and caring for Soraya, and typing when charting for my patients (a big part of my day as a physician!) began to flare up my fingers.

I used to push through all of this. I felt like I had no choice. After all, who has time to go to therapy and doctor’s appointments when I am taking Soraya to her appointments???

But after my first surgery, I realized that if I got to the point where I can’t function, I actually wouldn’t be able to care for Soraya. She was and is my driving force in needing to care for myself and be proactive about my health.

So now, I do weights and cardio to help my joints. I keep up with therapy appointments (as much as I can). I even got a sleep study after being told I snore! Come to find out, those with EDS are more likely to have obstructive sleep apnea. I am PROUD to say I have a CPAP machine and sleep SO MUCH BETTER because of it. I grind my jaw less and now can eat food that is not smoothies!

Needless to say, I use vibrant adaptive equipment like my hand splint to share all of the above.

What barriers stand in your way of caring for yourself? How do you overcome them?

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Palliative Care: The Big Picture

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Sibling Spotlight: Dealing with Assumptions