“1 hour upright. 1 hour laying down. 1 hour productive. 2 hours laying down. Up, down. Kind of alive, then mostly dead. Back and forth. All day. Every day, lately. And the pain never stops. It varies in intensity, but it never goes away.”

The last couple years, my health has declined severely, and these last few weeks, things have been really bad. I can’t be upright and functional for more than two hours at a time without severe pain. Most days, my heart and blood pressure are so unstable that I spend all day laying down, only getting up when I can’t hold my bowels or bladder any longer. On those days, even eating is rare because it tends to make my heart flip the fuck out for some reason. It could be gastroparesis, where food doesn’t empty from my stomach like it should, and there’s pressure on my heart or arteries. It could be that there’s something in the way – scar tissue, intestines in the wrong spot, swelling or aneurysm in my aorta – or even some kind of organ rupture or herniation. If I actually have vascular EDS (and maybe even if it’s not vascular?), I guess it could be that there’s some sort of adhesion between organs. I don’t know, and I have yet to find doctors who know enough to be helpful. I just know that I can’t eat more than a fistful of anything at a time without needing to lay down for at least half an hour afterwards, and I definitely can’t eat meat or more than a few bites of cheese without horrible intestinal pain for the next three or four days until it finally leaves my body. I can eat fish and eggs. I can handle about a piece and a half of pizza sometimes, but usually it’s too dense and makes me sick. Really, it’s rare for me to not feel sick in some way after eating, no matter what it is. Sometimes it’s a tearing, searing, stabbing sort of sensation, along with a pounding, irregular heartbeat, dizziness, nausea, heightened migraine (my migraine is 24/7 now, at a baseline pain score of 3/10), chest tightness, restricted breathing, and sort of a crampy, stabbing pain in the center and the left side of my chest, sometimes shooting up into my armpit. Sometimes, I just get a sour stomach and indigestion. And whenever my stomach and upper body are done throwing their tantrums, it moves into my gut, where it turns to a gurgle symphony with cramping that keeps me hunched over or at least unable to stand up without feeling like I’m being ripped apart from the inside. Usually, within half an hour to an hour after eating, I run to the toilet and assplode, and things calm down. If I’ve eaten something too dense, I put up with a mosh pit of spike-covered rocks in my gut for a few days, followed by a tearful delivery of something almost as dark red as it is brown, bending and leaning in all directions to coax the bastard pate out of there. And it’s not even what I’d call solid! That’s the kicker – I turn around to check how healthy-looking it is, and it’s still not much firmer than lumpy mashed potatoes.

Grossness aside, regardless of what my digestive tract is doing, every day is a struggle with my heart, head, spine, and blood pressure. Like I said, my migraine will not go away. Probably 50% of the time, it hovers around a 3 on the pain scale. It takes very little to knock it up to at least a 6, and my migraine medicine does little more than take the edge off. Bending, smells, coughing or sneezing, blood pressure changes, neck pain, laying with my head in the wrong position (I can’t hardly lay on my back facing up without head pain or pressure, even though I have to do so for my neck pain – definitely a ‘lesser evil’ trade-off there) – all these things can shut me down via brain pain within just a few minutes. Even swallowing sometimes can make my head hurt more. I have trouble swallowing, too, aspirating easily and struggling to get things to actually go into and then down my throat, like there’s a fist tucked into my head-neck junction, starting just at the lower half of my ears. But of course, because my MRIs don’t show an explanation, my doctors keep writing me off as a psych case. There is a positional MRI that would scan with me sitting up, and I’m working toward finding a doctor who’ll order one for me. It’s what’s needed to see if cervicocranial instability (CCI) is the cause for all this, but awareness and the ability to set egos aside are rare among medical professionals, so it’s a time-consuming and infuriating process.

My heart and blood pressure are completely unstable. I have to sit up and stand up slowly to avoid blacking out. I have all kinds of POTS symptoms, but my cardiologist wrote me off as an attention seeker last year and doesn’t listen to me any more, so I need to find a new one, but my PCP has chosen to do the same so I also need a new one of those before I can get a referral to any new specialist. Bending, laughing, coughing, eating too much, intestinal upset, heat, walking, reaching above my head, sitting in the wrong position, eating the wrong foods (soy, MSG, anything artificial, etc.), anything that triggers anxiety (which is a lot of things for me), lifting – these are all things that can trigger a fast, irregular, pounding heartbeat and dizziness, blurred vision, migraine exacerbation, seeing stars or blind spots, pressure in my head and neck, nausea, and feeling like my limbs are so heavy they want to glue me to the ground. The scariest part of all this is that if it’s not some kind of dysautonomia, it could all be symptoms of vascular EDS (vEDS). In fact, I have the majority of vEDS symptoms. I see a geneticist in September for testing to try and determine exactly which type I have.

Regardless of what my head, heart and gut are doing, my spine is in constant turmoil. It’s gotten to where I struggle to hold myself upright because it just hurts too much. I really can’t sit or stand for more than an hour or so before feeling like I need to lay down and decompress my spine. It pops all the time without me doing anything to it. Just breathing deeply will make it pop up higher, and a simple stretch or even change in position will make it pop anywhere below my shoulder blades. It subluxates (partially dislocates) easily, and I’ve even paralyzed myself from the waste down before just by arching my back too far. There’s a permanent feeling of pressure along about a 4-5 inch section of my back, and the skin over that section is mostly numb. My husband says you can see an obvious displacement in the vertebrae, and I’ve felt the pain of it since the ER trip I took last July where they wrote me off as a drug-seeker and refused to even examine me. Since then, I’ve not been taken seriously by any of my doctors, and no one has done a thorough examination of my spine. I’m hoping my new physiatrist – the one who actually diagnosed the EDS – will do that at my appointment tomorrow. The more active I try to be, the worse the pain gets, and I regularly have to lie down with strategically-placed pillows to let my spine decompress. Yoga used to be helpful, but it really doesn’t do much any more. My neck and mid-back have a baseline pain score of about 4/10, and they often jump up to 8/9 with simple movements.

So, with all that (and more), I have had to adjust to a new normal way of being. I used to be a hard worker. I’d be the fastest, most efficient employee, no matter what I was doing. I was loved by bosses because I always exceeded performance expectations. Then my body started failing, and I started getting in trouble for missing too much work. I kept thinking if I could just find the right team of doctors and figure out the right treatment for everything (this was before the EDS diagnosis, where my chart listed things like fibromyalgia, migraines, syncope, IBS, scoliosis, hip dysplasia, and a dozen or so other conditions), that I would start getting better and eventually return to my ‘normal’ way of functioning. I switched to part-time work when I got married and had my husband for financial support, and for a while, I was again a star employee… until I started missing too much work again because my body just couldn’t keep up any more.

Now, I get excited when I’m able to wash dishes, which only happens every couple days and sometimes only once a week. I’m proud of myself when I’m able to wash and put away two or three loads of laundry. If I can sweep the floors or scoop the litterbox or dust, it’s a great day! I spend most days on the couch in my PJs, trying to summon the energy to shower and get dressed, or to catch up on daily housekeeping. Going out for anything is a big deal. I can’t get groceries without help because I can’t push the cart very well, and it takes so much out of me that I usually wind up feeling like I might pass out before we’re 2/3 of the way through the store. I have to stretch and change positions so much that dinner out or a movie date leaves me feeling embarrassed, awkward, and in immense pain because I can’t just take a break and lay down like I would at home. I’ll never walk without a cane again because the potential complications from the surgery to fix my hip are too dangerous. I’m a fast walker who can’t walk fast without my heart throwing a fit or my hip dislocating.My ribs don’t stay where they’re supposed to, and it’s getting harder and harder for me to hold on to things because my wrists, hands and fingers keep trying harder to dislocate.

My normal is dead, and there’s nothing I can do to revive it. There’s no surgery or pill I can tolerate. I tried pain meds, and my body is so fucked up that everything has more negative side effects for me than helpful effects. If I do have CCI, there’s a surgery for that, but it’s high-risk, and recovery will be grueling, and there’s no guarantee it would alleviate current symptoms. Many with EDS find help with chiropractic adjustments, but my syringeomyelia and spinal subluxations make the risks too great to be worth trying for me. Marijuana has proven helpful for some of my issues in the past, but it’s illegal where I live. What can I do? I can wear different braces to help me hold my body together. That’s really the only low-risk option I have that might offer some relief.

So, here I am, struggling to accept my new normal. I need lots of rest. I need my activities to be very low-impact. I need help keeping my house clean and running errands. I need to write everything down so I don’t forget as much. I need to keep moving and stretching, but I also need to do so in a very slow, calm way. I need easy access to a bathroom at all times because I’m becoming more and more incontinent. I need lots of pillows everywhere, all the time. I need to eat like an 80-year-old woman. I need friends and family to understand that spending time with them is something I wish I could do more and that sometimes I just can’t, no matter how much I want to. I need to take lots of long, hot baths, something I never did until the last year or so. I’ve swallowed a giant chunk of pride having to admit to myself that I am no longer a strong, high performance machine. I am now a disabled person. I have a disability. I have limits. I can’t run through life, balls to the wall, anymore. I have to be careful. I have to be gentle with myself and cherish the times when I can do things other people do without a single thought as to how much their body invests in those activities.

Can I do it? Can I adapt who I am and how I live? Of course I can. I’m a fucking badass. I’ve survived worse, so I know full well that I can get through this bullshit and come out the other side with a goddamn victorious roar. Right now, I’m in the trenches, and there are days I wish I could just give up or that I could just stop living. I fucking hate it. I wouldn’t wish this shit on anyone. I know I’ll get there, though, to that place where it all fits together and runs smoothly. I’ll find my way to acceptance of the new normal this life has in store for me, and I’ll get back to kicking ass and taking names eventually. I’ll just have to find different weapons to use on the way there.

 

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