I’m borrowing liberally from Charles Dickens’ A Christmas Carol for this post. This December 2014 I’m thrilled to find myself ever so slowly climbing back out of the hole I fell in when a metaphorical “bomb” went off in my life three years ago and I succumbed to my Ehlers-Danlos Syndrome onset cascade in early 2012 leaving me wheelchair bound most of that year. (A thankfully rare experience, even in the EDS community. I’m finally down to the last 3″ of papers to file from the two businesses I was running at the time too, phew! We won’t mention the foot and a half of medical and insurance records that have come in since then.)
I’m thrilled to be walking again, albeit with one Lofstrand (forearm) crutch still, much like Tiny Tim, though not too far yet, sigh. (Do NOT call me Tiny Tim however, or expect a paper cut from one of my many files!) I so wanted to turn it into a cane by this Christmas at least, but I’m just not stable enough on inclines and stairs yet to pull it off. I can actually walk freehand and even dance a little in slippery (leather) soled shoes on smooth hard wood floors (where my scuffing feet don’t trip me), and come close on other level surfaces like flat carpeting. But I’m betrayed as soon as there is any change in the surface, or an incline or step of any kind. So close! Maybe, just maybe I’ll get down to a cane by my 49th birthday next year. I’m sure not going to stop trying. (I do regular water therapy and bike a lot to that end, along with juicing these days.)
In other news, I’ve been slowly catching up with old and new friends thanks to Facebooks’ stalkery nature, where friends of friends can see what you post, especially if you’re tagged in a photo. Happily this has netted me some great new friends and renewed some old acquaintances for the better. Needless to say, I’ve had some ‘splainin’ to do Lucy, as folks either have no idea what happened to me, or that any thing has happened at all, since I don’t complain much on my status anymore now that the dust is starting to settle again. (It’s boring, truly! Same song, different day, so let’s post something interesting instead, shall we?) But all this catching up has forced me to find creative ways to nutshell my condition quickly and lightly for people, so they are neither bored, nor overwhelmed, nor depressed by it. Especially since folks who meet me sitting or biking have no idea anything is wrong until I go to move, smile. And, since I also don’t go out when I’m down (read: can’t). So they only see me when I’m “up”, literally, and energetically. (Oh if you could only see the furious paddling ‘neath the surface! But please don’t stop asking me out – it’s always worth it for me, trust me.)
Anyway, because I’m not looking for pity, nor sympathy even, but just some understanding and comprehension, I’ve been chewing on some analogies to explain how my condition feels to the unafflicted toward that end. Much as Christine Miserandino did when she hatched her brilliant and wildly popular Spoon Theory of energy conservation for those with chronic illness for one of her friends a few years ago. One of the more useful ones I’ve come up with on the fly recently included saying that on a good day I feel like a healthy well-trained marathon runner does – after the marathon. (I feel like a weaker/less healthy marathon runner post-race on a bad day, smile). Yes, every single day. Yes, I feel that much pain/fatigue and in most of the same places, as they are experiencing a similiar amount of wear and tear of their healthy tissues as an EDS patient can just trying to stand up or walk (if able) to the bathroom and back depending on their condition. Yes, this is slowly, glacially improving for me with time, therapy and continued high-dose Vitamin C and magnesium supplementation. But it remains true, and I still come apart ridiculously easily, so it’s easily reversed on a dime with one wrong move. At least I can usually sleep without injuring much now. That was not the case in 2012-13 when I had to hold my body in a “safe” position with extra pillows and blankets all around. I know too many who still require this extra bedding support unfortunately. (I just can’t sleep on my side without taking my ribs out still, darn it.)
Another analogy that works for my mast cell reactions includes explaining that I feel like most do when they have the flu, just minus the high grade fever and vomiting usually. Unfortunately I still have constant GI pain and discomfort on a par with the flu, minus the diarrhea and vomiting. Thankfully I’m not prone to more severe reactions requiring epi-pen injections like many of my cohorts, especially since going allergy and trigger-free at home, plus supplementing with quercetin (a known natural mast cell stabilizer). Mine now mostly result in massive headaches and sensory issues from hydrocephalus, and feeling “rhino-darted” like the animals Jim Fowler used to tag on Mutual of Omaha’s Wild Kingdom, for those old enough to remember that wonderful show, smile. Occasionally I break out itching in hives that have interfered with my sleep and more recently my love life, sigh. This can also change on a dime however if I eat the wrong food, or too many triggers in a row, which leaves me worshipping the porcelain again. I’ve blessedly cleared up my esophageal spasms since starting to eat so clean at least. (Thankfully there’s something to show for all my time in the kitchen preparing whole unprocessed organic foods!)
My latest inspired analogy however comes once again from Charles Dickens. I’ve been trying hard to come up with a way to help my healthy friends and doctors to understand my condition at 48, when they run circles around me in their 60’s, 70’s and even 80’s in some cases. And I realized, I could be considered the “Ghost of Christmas Future” for most of them, anyway. Not that I wish pain and hardship on anyone! But, as the Buddhists teach us, no one is exempt from birth, old age, sickness and ultimately death. And barring early death, I realized even my enviably healthy middle-aged doctor might finally enjoy a taste of my experience after he ages a good bit and becomes infirm (don’t hold yer breath – he’s a vegetarian yoga practitioner, smile.) Maybe ;). (He may go out like Jack LaLanne fit to the very end knowing my luck). For everyone’s collagen ultimately gives out as they age – wrinkly, see-through skin, aching and sagging bodies, anyone? Less robust digestion? I don’t know any elderly folks without some droopy signs and aches and pains. So everyone will enjoy some degree of the EDS experience with old age if they’re lucky enough to get there.
We just get to enjoy it “early” and more, unfortunately, which is why we’re so hard to recognize – except for our pinched faces (from pain) and bad gaits, we otherwise look quite “good” on the outside to the untrained eye in or out of our wheelchairs. (Sadly quite young in some cases.) But just watch me move – like a much older person. 🙂 I’ll make your day – you can feel better about how well you get up the aisle or up and down stairs in two shakes. And take heed of all my assistive devices (walker, canes, bath bench, blanket booster, wheelchairs etc.) and techniques… you too will benefit from them all one day. (I’m practicing my “Get off my lawn!” shout while shaking my stick as we speak. It’s really satisfying. 😉
But lest you think I’m feeling sorry for myself this Christmas, far from it – compared to three years ago, I feel incredibly blessed to have the insight, means and time to properly care for myself (and my sweet Peanut) despite this lousy condition and all its attendant complications. And I hope to shed the latter analogy by the time I’m 50 if I can help it ;). Let’s see what new analogies 2015 brings. (Yes, the rising Phoenix has crossed my mind a couple of times).
Meanwhile, I’d love to hear some of your favorite personal descriptions and analogies you’ve come up with while trying to describe this almost indescribable condition to your friends and family. Please share in the comments below!
Happy Holidays everyone,
PB and Jandroid 2014