A Perfect Storm : Life with Ehlers-Danlos Syndrome

Sometimes I get pretty smug about how well I live my life with a connective tissue disorder, Ehlers-Danlos Syndrome. See my post: Swim and Ehlers-Danlos Syndrome for an example. I am pretty proud of myself for regaining my health after a long six or seven years spent disabled by the condition.. it took a lot of research, and then a lot of grief, and then a lot of work and commitment to get to the place I’m in now, which is mainly healthy and pretty active. But every now and then I’m humbled by the power of this condition to take complete control of my life when I least expect it.

No matter how hard I try to remain healthy, now and again I get sidelined. Most usually it is stress, or a simple virus, that knocks me down and puts me out of the game of life for a while. I recently wrote about stress and how I manage it, after what was an incredibly emotionally exhausting saga in my life. I know how important it is to manage stress because this isn’t my first rodeo. I knew at the time I wrote that post that I would be paying for that stressful experience, and I was trying to be proactive to minimize the damage. And still, here I am, in severe pain, contemplating a long recovery from what began as a common cold.

As I feared might happen, extreme stress likely led to susceptibility to infection, and a simple annoying cold caused the perfect storm. I caught cold a week ago and it has been pretty nasty. I ended up laying around for several days (bad, bad, bad when you have EDS.) I violently sneezed a lot, which caused me to dislocate my shoulder and aggravate an old back injury. And so on top of a wicked cold all of the muscles in my shoulder and upper back are spasming. There are hot knives in my back and neck now, and it’s hard to sit, hard to stand, hard to sleep, hard to move. I know from experience that I should move anyway, but there’s nothing like severe pain to discourage that nonsense! If I don’t move, my recovery will be longer. If I do move, it’s agonizing and slow. I know from experience that I will not likely feel 100% again for days if not weeks. It’s frustrating.

Another complication of the common cold for me is a flare-up of my dysautonomia symptoms. Dysautonomia is the malfunction of the autonomic nervous system- which controls your “automatic” body functions like blood pressure, heart rate, digestion and temperature control. I nearly faint every time I stand, I’m freezing and my arms and legs are ice blocks. My heart races and palpitates. I can’t think clearly, I forget words and sometimes even slur. I’ve been “lucky” to find much relief from this common comorbidity of EDS through swim. But I haven’t been swimming lately, and for whatever reason these problematic symptoms always comes back with a vengeance when I get sick.

So here I am still sick with the remnants of a cold, hot knives in my back and neck- dizzy, cold and exhausted, wondering how long this flare-up is going to last. In the meantime I’m darned near useless as a human being and there’s nothing I hate more than doing nothing. Productivity is very important to me. If nothing else, when I’m down I like to knit- but looking down at my work is impossible when my neck is spasming… and so I read and watch Netflix, taking frequent breaks to stretch- and work hard at being nice to myself. Patience is what I must practice, in times like these.

One thing I have learned is that I will recover, even if it takes a while- I will wake up pain-free once more, I will be back in the pool in time, and I will be smug about my good health again. And then, when I least expect it, EDS will strike again.




Today’s Project: Family history research on Ancestry.com

Today’s Soundtrack: Coloring Book by Chance the Rapper

I’m Reading: The Stand by Stephen King. For the third time. It’s been a while.

Leave a Reply