Of course, it’s EDS Awareness Month, and this has been a difficult month for me to write. I recently found and started following Christina Doherty both on Facebook and on Youtube, and right at the start of May, she posted about her #edsawaregiveaway. I’ve wanted to get a post written about the impact of EDS on my life since then and just haven’t had the brainpower to do so. Today, stuck at home while Hubby and his mom are an hour south at Costco, I’ll be using my *NEW LAPTOP HUBBY GOT ME FOR MY BIRTHDAY!!!* to share what I can in honor of EDS Awareness Month.
Now, where to start…
So, Ehlers Danlos Syndrome is a genetic defect in collagen, the glue that holds everything together. Because the “building blocks” of ALL my tissues – tendons, muscles, organ tissue, vascular tissue, cartilage, bones – are faulty, EVERYTHING is weak and fragile. Basically all of my joints – fingers, wrists, elbows, shoulders, jaw, spine, hips, knees, ankles, toes, and even the tissue within my hands and feet – will randomly subluxate or dislocate, many of them shifting several times a day. This not only causes pain when it happens just for the trauma to tissue, but it creates inflammation and pressure on nerves and veins, creating a snowball effect that makes a shift painful for days or weeks and with different levels of pain. It happens enough that I often don’t even notice anymore.
My cervical and thoracic spine are so unstable that I can’t hold myself upright for more than about an hour straight on good days, and I wear a back and neck brace whenever I leave the house or try to do any housework. It seems to give me about 50% more time upright than without it, though I’ve learned it can actually lift my skull up off my spine if I’m not paying attention when I bend, and that will incapacitate me for a day or so. Because of this spinal instability, I have a syrinx in my thoracic spine and an Acquired Chiari Malformation or Brain Slump. This means pressure on my brain stem, which causes autonomic dysfunction – tachycardia, arrhythmia, trouble breathing, swallowing difficulties, digestive immotility, blood pressure drops and spikes. And then there’s sporadic partial paralysis from the waist down and incontinence, on top of incessant nerve pain over my entire body. Some areas have distorted sensation, too, meaning even running my shower pouf over my skin feels like sandpaper or steel wool.
Because of my chemical sensitivities, I can’t take any of the prescription painkillers that have been offered to me. I take long, hot magnesium baths where I do my best to massage joints and myofascial trigger points to release spasming muscles so stuff can slip back into place. If I were able to drive, I’d be seeing a Physical Therapist to do this kind of thing for me, but I can’t so I do my best on my own. Mindfulness, meditation, and a bit of yoga (adapted for my limits) help, too. I also take around two dozen pills a day of just supplements to deal with my body’s inability to properly process and absorb nutrients. Migraines are common, as are random adrenaline surges, and I have prescriptions for those, though my tolerance builds quickly so I can’t take anything too often or it quits helping. Nothing really does anything for the constant pressure in my head, so it’s just something I deal with by popping my ears constantly. Cannabis has proven very helpful for my pain, nausea, energy, lost appetite, and other symptoms, but it’s not legal where I live, so I am currently unable to treat any of my pain effectively.
Long story short, I can’t drive myself safely more than about five minutes from home and only on really good days. I can’t be upright for more than usually about 45 minutes before needing to lay down. I spend most of my time laying down or sitting in a recliner with a pillow behind me. My eyes often fail me so reading and even watching shows becomes challenging and painful. I walk with a cane and actually should be in a wheelchair sometimes, though I’ve not given in to it yet. I can’t keep up with housework. I can only shower every three or four days. I can’t cook much because I can’t stand long enough or hold pans without my hands, wrists, or fingers giving out. (I’ve broken a lot of dishes by dropping them.) I’m constantly popping my ears to relieve pressure so I can hear and think better. My cognitive and sensory processing keep me from being able to interact appropriately with others a lot. My pain level never drops below a 3 on the 1-10 scale, and most days, I fluctuate between 5 and 7.
I used to be that supergirl who could go go go until I dropped. I was the best kind of over-achieving employee except for randomly missing a lot of work. I was the spazz who made everything fun. Now, I’m totally dependent on others for help with even the most mundane of things, and I’m in pain 24/7. I can’t do the things I love – camping, hiking, driving like I stole it, going out with friends. It’s a bitter and lonely existence I’ve found through EDS and its complications.
Thankfully, although I’ve lost a lot of function and even family and friends on this journey, I’ve had an amazing Hubby by my side for the worst of it, and I’ve developed some wonderful friendships with more compassionate and caring people along the way. I dunno what I’d do without the internet and the information and personal connections it has provided. Much love to all my zebra tribe and bloggie friends ❤