Just a little poison

Sometimes it’s really hard to write about other people’s happy times when it reminds me of when I was strong and thought I could do almost anything.

Sometimes it’s an escape, but sometimes it’s just a really rough reminder of how hard I’m struggling right now.

The true answer to “How are you” behind the cut. It ain’t pretty.

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Why having the EDS diagnosis matters

Why does diagnosis matter?

When I was 4 years old, I got a flu that made it hurt to walk. And a couple months later it hurt to walk again and my mother told me I was making it up for the attention.

When I was 7 years old, I failed English because of instead of copying a sentence over and putting correction in the new sentence, I just put the punctuation in where it belonged on the typed sentence because writing hurt my hands. I flat out refused to do busywork because a) it was boring and unnecessary and b) it hurt.

When I was 8, my handwriting was still terrible, and handwriting hurt, so when we took a trip across country, camping, for a month, every day my mother made me practice my handwriting for half an hour or more a day. It kind of fixated my hatred of handwriting and the quality of it at about a third grade level. She was trying to help. If we’d known that the problem was underlying hand instability, maybe we could have done something to make it easier. Diagnosis matters. My son will never, ever have people accusing him of laziness

I could never run fast. I was always the slowest one. They’d tell me to run faster, and I’d twist my ankle and have to stop, and they’d say I did it to get out of running. I was labeled “lazy” and “clumsy”. I learned to fear running. This despite the fact that I loved climbing trees and swimming and was quite good at both of those things. If they’d wrapped my ankles and knees and had someone teach me how to run correctly, maybe my ankles would not have gotten so bad.

I took ballet from kindergarten through the sixth grade. My wobbly joints made it hard to do things steadily. And my mother wouldn’t let me go en pointe because i couldn’t hold my stomach flat. In retrospect, I got off easy, though I was angry about it at the time. I look at the damage dancers experience (and hypermobility is a selection criteria for top dancers) and I shudder.

We had yoga classes sometimes in school. I was “very good” at yoga. I will never do yoga again. In our family, “But have you tried yoga?” is a catchphrase we use to label assvice from clueless people about how to deal with chronic pain issues. I’m a goddamned pretzel, I don’t need more flexibility in my life.

My skin was extraordinarily sensitive from a very young age. I could not tolerate anything close to the front of my throat, it made me gag. I woudln’t let my mother zip up my coats all the way, starting from age 3, because they “glecked my neck”. Tags in clothes. Scratchy seams. Elastics. Lace. Pilly poly/cotton. Acrylic. I would have physical shuddering reactions to touching most of those things. Underwear HAD to have covered elastics. We learned to cut the edges from tags that had been melted to stop fraying. “I don’t like that, it’s itchy” probably drove Mom up the wall but she stopped trying to force me to wear things after a while. I was given a clothing budget and allowed to shop for my own clothes at a surprisingly young age because she was so over it. Don’t blame her a bit. Knowing how sensitive skin can be maddening, my kids lead a relatively cushy life in that respect.

Sudafed knocked me out and made me sleep. Scared my dad to death because I was sleeping so hard I didn’t answer the phone when he called to check on me one sick day. He came flying home from work to make sure I wasn’t dead. It’s not supposed to make people sleepy. On the other hand, drugs like Demerol and such that are supposed to make people forget about pain absolutely never worked. They would lie to me and tell me I wouldn’t remember and I totally would. I had an appendectomy at 14 and my mother had to push her way into the recovery room and snap at me to stop pulling off my dressings because I was so combative coming out from under general and had so much breakthrough pain that I was clawing the bandages off.

I never understood solarcaine, because it stopped working for me as soon as it dried. Dentists put unbelievable amounts of novocaine in and it would still wear off before they were done. They blamed it on my red hair, long after my hair went brown. They’re not wrong, but EDS also explains it. We won’t talk about how badly the epidural failed with my last baby.

After one sprain, I discovered that things felt better if I wrapped both ankles. Several people said I was attention seeking, so I stopped. I joined swim team so as never to have to deal with the track again. Still had to run during the presidential whatsis. And twisted my ankle.

In high school, it took so much effort to keep my hand stable enough to write that I could not take notes. I couldn’t listen, write and learn at the same time. Could not. People were pissed off that I would learn material without notes. I had to. Notes were too hard. I got docked in some classes for not taking them. I graduated with a 3.87. Probably would have been closer to a 3.92 if I’d been able to take notes. When I took a college class in my 30’s with a laptop, I was able to type the lecture verbatim while learning and listening. It’s hard to write if you have to fight your fingers bending backwards all the damned time. Essay tests were the actual worst. I started typing my papers on a computer before most people had access to home computers.

My handwriting is still awful. But now I use a special pen that doesn’t hurt so much, ask to type the responses to long forms, and flat out refuse to write long things and ask for someone to write for me if I can’t type out the responses.

I got pregnant when I was 20. The nausea and stretch marks were insane. My pelvic floor and belly would never be the same. My breasts headed south. People talked about “bouncing back” from having a baby”, I just found a new normal, one in which I had giant breasts and stretch marks over 90% of my body. I almost passed out a number of times… pregnancy makes you more stretchy, and while I don’t always have POTS, I surely did when I was pregnant. Ended up having unnecessary tests done because we were worried it was another embolism. Nope. Just my flaky body being flaky again.

I developed a series of food allergies. So did my kid. The list of things I’m allergic to is exhausting, and i often forget things until they’re in front of me.

At 23, the world wide web happened and a few years after that I met someone online with severe EDS. Some of it rang bells but I’d never knowingly dislocated things, so I shrugged it off because my skin wasn’t stretchy “enough” and my joints didn’t dislocate. I wasn’t as bad off as her so that couldn’t be it.

My hair started falling out in my mid twenties and I put on a lot of weight. It would take another 8 years to get a hashimotos diagnosis. People said “diet and exercise.” Every time I exercised, 2 weeks in I would get sick or twist my ankle. I tried yoga.

By the time I was 32, I did manage to get close to my pre-baby weight and kept it off until another pregnancy. And a miscarriage and another pregnancy after that happened and my thyroid failed and I put on 80 pounds in about 5 years. The pregnancy was particularly damaging to my pelvis as my child had craniosynostosis and macrocephaly and I pushed her out vaginally and destroyed my pelvic stability. I didn’t sleep for 2 months after she was born, struggling with feeding issues. She was 4 1/2-5 months old before walking didn’t hurt.

Parenting a special needs child and caretaking a mother in law with dementia crashed my adrenals when I went on thyroid meds. My thyroid was only diagnosed because it was one of the things they tested for when I said, “I keep falling” after it took six months to recover from a sprain only for me to fall again.

It was a very difficult time. I was diagnosed with IBS and fibro and sleep apnea and sleep timing disorder and had another pulmonary embolism (I have a clotting disorder as the cherry on top). I went from doing 14 hours a day of hard labor remodeling our house to barely able to function. And yet people sighed heavily when I said I needed help, because I must be exaggerating. Or because they’d been helping so much they were exhausted.

I was put into physical therapy to help me get back some function. That was helpful. I had another baby. That wasn’t. By that point, I figured out that pregnancy was destructive and I had my uterus out when he was 11 1/2 months old. While they did it, they repaired the cystocele and rectocele and open tear that was left from my first baby. The repairs failed within a year. I won’t have them redone.

Someone asked, “Have you considered your problem might be psychological?”

I didn’t speak to him again for a long time. We will never be as good friends as we used to be.

More falls, more pain, more PT, another embolism. I kept thinking, “How can it be possible for one person to have this many diagnoses?”

I began to wonder if maybe I was a hypochondriac. Then I started reading about EDS, and the lightbulb went off. And suddenly it all made sense, and I stopped feeling so crazy and started feeling really angry at the people who pushed me and bullied me and didn’t listen and made me feel like asking for help was a failure and that I didn’t deserve help.

I didn’t deserve to be treated that way. I would be less disabled now if I’d had more support then. I’d have done better in school from an earlier age. I probably wouldn’t have crashed and burned in college so hard. Maybe other things would have been harder or worse knowing, but not knowing did actually create problems. I don’t actually blame people for not knowing, they just didn’t know. They couldn’t know. But part of me wishes I could go back in time and say, “Knock it off. This is why.”

Here’s the thing. I get hurt when I push myself. I pushed myself hard for many years.   At heart, who I am, is someone who wants to help people. I want to fix things. I want to make things better. I want to learn. I want to do. I want to live.

I hate bedrest. I intensely dislike going to the doctor. It takes an enormous amount for me to go through the process of making an appointment, and going to the ER is literally the last thing I want to except for dying. So I don’t go unless I’m scared to death. I don’t scare easy.

I put up with things for YEARS rather than ask for help with them because I hate asking for help. I hate being needy. I hate not being the person who can make it better. I don’t like saying no.

When I can, I do. Sometimes I do even when I shouldn’t. And the price is high. One day of overdoing can cost me a week of function. One injury or illness can cost me months of muscle mass. If I seem wary, it’s because of experience, not timidity.

So what do I deserve? I deserve what we all deserve. We deserve doctors who listen and are curious enough to figure out underlying causes. We deserve to be treated with respect and have our conditions treated and pain relieved. We deserve a good quality of life. We deserve supports to make the most out of what we have.

We don’t deserve to be labeled “Drug seekers.”
We don’t deserve to be labeled “Hypochondriacs.”
We’re not lazy.
We’re not attention seeking.
We’re probably a hell of a lot more tired of the laundry list of diagnoses than anyone else in our lives.
And it is reasonable for us to want to understand our bodies and why they do the things they do.

A diagnosis, while stressful, can remove huge stressors, especially that internal voice that says, “Am I crazy? Am I making it up? Are they right about me?”

It can be the difference between finding the right help and being more damaged when we “try yoga.”

Ehlers-Danlos syndrome

I find myself going through a lot of stages with grappling with this diagnosis. Most of them involve anger, rage, even… Not at the syndrome, but at how I was treated as a child. I keep flashing to things… like having pronounced leg pain and not wanting to walk, and being told I was “making it up for the attention”. I was four.  Being the slowest runner in any class… and being told I was just lazy and that I needed to “try harder”. I’d try harder…and my ankles would go out, and I would fall, and then I’d be told I had done it to get out of running, and that I was making it up.

“You’re so flexible.” Yeah. Great for party tricks when you’re a kid… as an adult, showing off that flexibility hurts every time. I guard everything, and become paradoxically stiff because I’m putting so much energy into holding myself together. It did not dawn on me, oddly enough, until I was in my 40’s, that this is different from how most people experience the world.

IBS… gut is made of collagen. Mine is wrong. IBS is common in EDS.

Allergies (see gut is made of collagen and mine is wrong…)

The stretch marks that riddle my body. The weird texture at the bottom of them.

My fingers… handwriting always terrible, told I wasn’t trying hard enough, wasn’t concentrating enough.  “You’re holding the pencil wrong”. I fix my grip, my finger stays for a moment and then bends backwards. I adjust to something that sort of works. I’m told my handwriting is terrible and I’m holding the pencil wrong. Typing is a godsend. Typing is easy. When I can type my notes, I can actually take notes because I’m not pouring every single ounce of attention I have into holding the damn pencil.

Fibromyalgia… except that unlike most people with fibro, I don’t have constant pain. But every other symptom. Oh, right, those are all co-located with EDS, which explains more than the fibro.

You know solarcaine? Yeah, that shit never worked on me much. Nor does Lidocaine, or novocaine… The doses they’d use to get something approximating enough numbness to do dental work were terrifying. The epidural would have been funny in its ineffectiveness if I hadn’t been in so much pain. It worked…for about 15 minutes. Then not. Oh look… EDS involves aytpical responses to medications. Huh. Funny, that. It’s not just being a redhead.

Going to physical therapy feels like whack-a-mole… we get everything aligned and something else pops out. Much of my time there is spent with the PT pushing my joints back into the socket properly. They’re not VERY far out of alignment… but enough to cause excruciating pain. And people wonder why I don’t want to move.

“Your cervix is very friable” says one doctor… it bleeds every time they do a pap smear. “It’s very sensitive” says another doctor… every touch causes contractions. I spent most of my periods as a teenager curled up in a miserable ball. “You have PID” says a nurse midwife doing a pelvic exam that causes me pain. No tests come back positive for anything, but I wouldn’t hurt if I wasn’t a “bad girl”. They give me antibiotics and birth control pills. The pills nearly kill me. They help the cramps, though.

“Your skin is so pretty,” gushes a drunk woman as I stand, age 17, waiting to float down the river for an event. I don’t know what to say. “It’s like velvet she says” and starts to reach towards me, the woman with her pulls her away. I am nonplussed. My “pretty” skin is also highly prone to rashes, scars a little funny, and I’ve had keratosis pilaris since I could remember. All those things are common in people with EDS.

“Your cervix was so fragile,” said the doctor, “That I couldn’t keep a clamp on it. Your uterus was falling apart as I took it out. I’ve never seen anything like it, and neither had my assistant.” Later, she says, “Oh, I see the problem. The stitch was tearing your skin.” I suspect that if she’d known the diagnosis at the time she would have stitched me very differently.

“Are you sure it’s not a psychological problem,” asks a well-meaning family friend who is chronically short on tact.  I stop spending time with him. I stop spending time with a lot of people.

“You should just go to bed earlier.” I wish. My body’s fucked up sleep cycle thinks that if I sleep before 1-2 am, I must be napping, and wakes me up after a couple hours. Interestingly if I lie down for a nap at 10 or 11 in the morning, it is easy to sleep for four to six hours. Sleeping hurts though… if I get enough sleep my body hurts more from lying in bed that long.  My goal is 2 am. But brain fog sets in and it is hard, hard to get up to bed sooner than 3 or 4. If allowed I can easily sleep for 8 solid hours if I start at about 3:30 am and am not disturbed. I have small children. Hah. “But if you just had more self-discipline….” And then I read “sleep disturbances are common in EDS.”

I spend my energy constantly in holding myself together. If I get distracted, I get hurt. If I am happy, I get hurt. If I exercise and am not scrupulously careful not to overdo it, I am toast for days.

The human body is 80% collagen. And mine? My collagen is all a little bit wrong. Welcome to the grand unifying theory of what the hell is wrong with me.