That Sinking Feeling

Wednesday it happened twice.

The first incident was in the pre-dawn darkness, when my alarm went off.  I keep it on the dresser across the room, so I just don’t keep hitting it in my sleep. I got out of bed and walked a few steps and then felt my knees gently give way. For a second I thought, “I’m going down,” but I had no choice. My hands met the carpet and then I found myself completely flat face down on the floor. Still motivated to hit the beeping alarm, I crawled a few steps and pulled myself up the front the of the dresser. Then I turned and stumbled back to bed. No witnesses, no injury, but not a good way to start the day.

Ben was already up making coffee. After lying down for few minutes, I decided to try to face the world. It crossed my mind that the stairs were dangerous, but I held on tight, took it slow, and made it. I came into the kitchen and said good morning. I wanted to tell him about the thing but also didn’t want to make a fuss. Ben is impossible to alarm, but still I downplayed it. This hasn’t happened for a long time, and its recurrence is depressing.

“I sort of fell upstairs this morning,” I said quietly.

He said, “I didn’t hear anything.”

I said, “Well, it was more of a crumpling. I didn’t fall over like a tree. And I was not hurt at all.”

“Can I help you?” he asked. I asked him to help me to the couch and get me some salt and water. I’m a salt connoisseur (-euse?) and so I added, “Try to find some of that Hawaiian  red salt.” I sat and ate the dark, crunchy salt and drank the water. Then I had some coffee and revived enough to wake up the kids and start the day. Wednesday is skiing day and usually I drop the kids off, go for a walk (or lately, I’ve been cross country skiing a little bit!), eat a post-fitness brunch at home and do the NYT crossword puzzle. (My Wednesday times are down around 12 minutes!) Then I do a grocery inventory, drive back to school, load the car with misc. kids, drive to skiing, drop off kids there, drive through the snowy Cuyahoga Valley to a rather obscure semi-organic grocery store, shop, drive back and get the kids, drive home, unpack groceries, and go on with the evening.

On this day I edited. Ben took the kids to school while I stayed on the couch. I didn’t go out and walk or ski, just tried to eat salt, drink water, elevate my feet and take it easy. I went to school around noon to get the kids and go to skiing, but I skipped the groceries. I just came home and lay back down, tried to rest. After an hour or so on the couch I had to go get the kids from skiing, where of course it was difficult to get them off the slopes. I walked around a bit and took some footage of Elias, skiing like a pro already. After a while I persuaded them to come home, drove back through the valley, and went back to my horizontal, safe position on my trusty couch.

I just felt unbalanced and weak, not dizzy in the sense of spinning around or motion sick– both of which can also happen on my bad days. Just limp and weak and skeptical of my body’s ability to maintain an upright position. Let’s face it: upright bipedalism is a ridiculous way to move through the world.

Ben got the groceries for me and I began to try to scrub some mussels I had been soaking in the fridge. But I needed a bigger bowl. I bent down to find one in a lower cupboard and then just sort of kept going down. It wasn’t a black out– it was a gray out. I tried to stand up and could see that was never going to work and then went down to one knee and then, when it was clear that I would pass out completely if I attempted to move, I just lay down on my side on the kitchen floor. This is what I like to call a choice. I like to tell myself that I’m just choosing to lie down on the kitchen floor of my own free will, when it’s really not optional at all. Ben’s feet appeared beside me.

“What can I do to help?” he asked. He had been sitting there reading something on his computer while I cooked, then noticed I was folding onto the floor.

“Will you get that bowl from the top shelf? The brown one?” I said from my horizontal fetal position. He got the bowl down for me. “Now put the mussels in it and fill it with water and see if they need scrubbing.” I heard water running and mussels rattling as he did this.

“Anything else?”

“Well, put some salt in the water and just let them soak, I guess, for a bit, while I get it together here.”

I kept lying on the floor, thinking about my view of the grunge under the cupboards. The baseboards need scrubbing, I thought. A couple weeks ago I was out for a walk with Ben and grayed out and had to lie on a park bench and look at the trees and sky. It was really a pretty view and I took a picture of it. This view was a lot less attractive, plus the added element of it sort of mocking me and my many shortcomings.

After a while I asked Ben to help me up, a perilous process. Then he supported me while I made my arduous journey to the couch. He got me water and salt and tried to keep everything as calm and ordinary as possible. I revived. Eventually I got hungry and it was getting late so I got up and cooked mussels in saffron cream, with a gluten free baguette. Ben and I didn’t talk about the incident, and I don’t think the kids even knew it had happened. Just as well. What’s the point in worrying them? We just went on with the evening as if nothing untoward was going on. We had homework and bedtime and after the kids were asleep I tried to take stock.

This is just my reality. Since this started in 2009, I’ve been to many doctors and had many tests. I’ve seen cardiologists and neurologists and audiologists. I’ve been to the vestibular and balance center. I’ve been to ENTs. I’ve been to a holistic integrated wellness doctor. I’ve had 18 months of vestibular therapy and a year of cardiac rehab. I’ve changed my diet radically, again and again. I’ve tried eliminating gluten, dairy, sugar, legumes, MSG, alcohol, all processed foods, caffeine, and tried many combinations of adding some or all back in. I’ve worn support stockings. I’ve guzzled coconut water with salt. I’ve had two endoscopies and two barium swallows. I’ve eaten radioactive eggs and been x-rayed. I’ve had endometriosis surgery, ovarian cysts removed, and a uterine ablation. I’ve been treated for acute anemia. I’ve nearly passed out the tilt table. I’ve been spun around in a dark capsule with goggles on. I’ve been put in a harness that was suspended from the ceiling and tried to balance as the walls and floor moved around me. I’ve had my autonomic nervous system tested. I’ve had a radioactive isotope sent around my circulatory system. I’ve had my blood sent to the Mayo Clinic. I’ve had warm and cold water shot into my ears. I’ve ridden the recumbent bike, the regular bike, walked on a treadmill, walked outside, and recently, skied. I’ve been to the Syncope Clinic many times. I’ve had a stress test, in which my blood pressure dropped by 50 points and I nearly fainted. I’ve worn a heart monitor for a month. I’ve had a stress echocardiogram. I’ve had an ultrasound of the aorta. I’ve adjusted my dosages. I’ve taken vitamins. I’ve eaten kale.

Over the last five years, I’ve changed the percentages of good to bad days. It used to be always, everyday, all the time. And now it’s just once in a while, and the rest of time I can be fairly normal. It’s the definition of chronic. It’s a chronic illness. It goes away, and then for reasons I can’t understand– the weather, hormones, dehydration, fatigue, a passing cloud, a bad dream– it comes back.

 

 

 

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3 Responses to That Sinking Feeling

  1. Emily CB says:

    Oh Catherine….:( So sorry. I hate relapses.

  2. Nicole says:

    I’m so sorry, I know how you feel..I have POTs, dizziness since age 8, and was recently diagnosed with MTHFR..Are you still taking methylfolate and B12?

    • Catherine says:

      Hi Nicole, sorry to be slow to reply. I do still have injected methylfolate and B12, which is made up special at my dr.s request at a compounding pharmacy. They adjusted the formula so it no longer includes B6, which I take orally. This was something to do with a change in federal regulations and compounding pharmacies, which I didn’t quite follow. But I have to say I am extremely happy with the change because the B6 element hurt like HELLLLLL! I would have to ice my leg long before and long after the shot. Now it’s just boom, done, no ice, no problems. Sometimes I do it wrong and end up with a bruise, but it doesn’t hurt, that’s the main thing.

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