“No, my heart will not yet despair. Gandalf fell and has returned and is with us. We may stand, if only on one leg, or at least be left still upon our knees.”
~ Pippin, J. R. R. Tolkien’s The Return of the King
This marks Day 3 of my Journey Through Middle-earth, a revisiting of the “Éowyn Challenge”. To learn more and how YOU can join my fellowship, check out my main challenge page here.
#JourneyThroughMiddleEarth Day 3
Entering Tookland
Miles 5-9: The Gym
Current Location: Tookland
May is Ehlers-Danlos Awareness Month! It’s drawing to a close, but I wanted to share with you my recent introduction to my life-long condition.
Part of why I’m doing this journey is as a health challenge. In 2017, I had a health crisis after years of worsening issues. Just about every joint in my body felt oddly unstable; I was in constant pain, and my ever-present fatigue seemed worse than normal. At one point, I started getting lightheaded and almost fainting just from standing still; this was the final push to go see a doctor.
Earlier that same year, my youngest sister was diagnosed with Ehlers-Danlos Syndrome.
The doctor ran a huge variety of tests and determined that I had hypothyroidism; this would help explain my stubborn weight gain in recent years, and was either the primary cause of my symptoms or exacerbating another cause. After a few months of balancing thyroid medication to find the right dose, many of the problems still persisted, although much more manageably.
The type of EDS I have is Hypermobile EDS. This is characterized first and foremost by laxity and instability in the joints, which can range from non-problematic all the way to largely disabling. I also have two conditions that seem to be related and are often found in h-EDS patients – Mast Cell Activation Syndrome (MCAS), which is an immunological issue where my mast cells misfire and/or fire in excess, so my body seems to almost randomly start acting like it’s having an allergic reaction, and Postural Orthostatic Tachycardia Syndrome (POTS), which is a dysautonomic issue where my body doesn’t always do a good job managing blood flow to my brain when I’m upright and my heart speeds up to compensate. A combination of the MCAD and POTS was what was causing my near-fainting (presyncope) and disorientation.
I am lucky. My symptoms (after getting the thyroid figured out) are still quite manageable, though they will likely worsen as I age. Because of my sister’s diagnosis, I didn’t have to jump through the years of hurdles she faced trying to get things explained. While most types of EDS have known genetic markers they can test for, h-EDS does not. EDS is considered underdiagnosed by experts because many of the issues mimic other conditions – arthritis, allergies, food sensitivities, etc – that are much more common.
There’s a famous saying for doctors – “when you hear hoofbeats, think of horses not zebras.” It means to look for the most common explanations for symptoms rather than think about the rare possibilities. EDS has a zebra as its mascot because, while not the most likely reason for many of these issues, it still exists, just like zebras still exist.
On to the journey!
As I said before, despite dealing with the EDS, MCAS and POTS, I consider myself lucky that my health isn’t worse. I’d like to keep it that way! Step 1: Lose weight. After years of hypothyroidism and two kids, I’ve gained quite a bit of weight. I’m currently around 200lbs at 5’9″, which is a far cry from where I’d like to be. To help keep me accountable, I’m going to be adding a weekly weigh-in to my personal challenge.
Week 0 weigh-in: 200.4 lbs at 5’9″ (starting weight)
My joints have stabilized enough that I can return to the gym (yay!), but because of how lightheaded I can still get when standing or even just sitting sometimes I have to be careful. I want to get back to doing yoga, but I fell and broke my arm last month so a lot of it is a no-go (sad face).
My machine of choice, then, has been the recumbent bike – I can set it to adjust to my heart rate to make sure it stays reasonable, and if I do start to get fuzzy-headed I’m sitting down in a way where I won’t topple.
I’m really hoping this will condition my body more to exertion and I’ll feel able to take on something else soon!
For now, another 5 miles logged, taking us into Tookland:
Bonus picture: due to my mast cells going nuts when I exercise, my face stays alarmingly red for way longer than it should. This is after cooling down, going to the locker room to collect my stuff, and then sitting down for a little while:
Super sexy, no? Totally #WorthIt, though.
Are you interested in a fun, nerdy fitness challenge? I’m looking forward to pressing onward and hope you’ll consider joining my fellowship!
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Wow. I didn’t even know about EDS. The symptoms are so broad that I could totally see it being something that could be mistaken as something else. Lovin that you’re still kickin butt!
Definitely! If it weren’t for my sister, I don’t think I or my doctors would have suspected it. Now that I know what’s going on, I’m able to manage my issues and flare ups way better!
I have never heard of EDS. Best of luck on your journey to your goal. This is a great post. I shared it 🙂
Thanks for helping spread awareness! 🙂 It’s still a little-known condition, so getting the word out is important so those who might be affected (or have children who might be affected) can ask their doctors about the possibility. It’s one of those things where the earlier you know about it, the more you can do about it!
I just learned of EDS last year when my then 3 year old went in for a heart murmur. The Cardiologist recognized it right away and told me that since my dad has connective tissue disease and she passed the tests in office they are saying she has probable, when we go next year I need to show him a video or picture of my brother doing the test for flexibility and then it will be official. Thank you for spreading awareness.
Best wishes for you and your family! I’m watching my kids like crazy now, and my 5 year old has been having joint soreness from hyperextending already. When I was little it was passed off as growing pains, so I’m glad I learned about it in time to properly help him. It can be tricky to diagnose clinically with kids because they’re naturally so flexible when they’re young – hopefully you can get the support you and your daughter need!
I had never heard of EDS until now. I have Trigeminal Neuralgia – among other things. I had never heard of it either, until…. I really admire everything you are doing. Things like this can lay you down and make you want to give up sometimes. Always remember that you are not alone! You have the Awesome attitude to kick it to the curb! Praying, Friends, and Family are big helps too. Don’t forget to let them!
Chronic conditions and hidden disabilities are more prevalent than a lot of people know, I think. Thanks for all the positive vibes! Sending many back your way, with gentle hugs 🙂