all the logic and language and loss

I was hoping to start feeling better again before I wrote anything, but this downturn is lasting longer than I thought it would. It’s not horrific. I’m not confined to the bed or couch, but, I’m not walking in the garden or doing my stretches ~ my two forms of activity. I’m basically just shuffling around the house, very Tin Man. Easter was the beginning of the slump, with symptoms aggravated by a teeth cleaning last week. I had been putting it off for a few months, thinking it was not a smart expenditure of energy, but, when I was having my good week, I made an appointment.

I looked online beforehand, but I couldn’t find any firsthand accounts of the ramifications of teeth cleanings on people with ME. Unfortunately, I can’t really give an accurate account because I compounded the effects by ~ I know, I’m an idiot ~ driving myself downtown to the appointment and chatting way too much to the hygienist because I wanted to fill her in on my situation (I’ve been going to the same dental clinic for over a decade).

I thought the drive would be straightforward and I didn’t want to ask my husband to take the day off work. Big mistake. Again. The problems started while I was walking from the elevators to the dental office. My heart rate was over 120 bpm and I had to stop walking repeatedly. This was a short hallway and I felt ridiculous stopping every two steps to wait for my heart to calm down. I wasn’t nervous about the appointment, so I think it was because I was carrying my purse… That’s my theory. The cleaning itself was fine. I asked her to be very gentle and skip the floss. The worst part was coming back upright after being tipped fully head-down in the chair for so long. But I recovered quickly from the momentary vertigo and went home.

That night I was curled in a ball on the kitchen floor, crying, feeling like I was dying, dogs swarming around me, wondering what was wrong. I told my husband, “Never let me drive downtown again, no matter how strong I say I’m feeling.” I tried to figure out the reason: Was it because I drove too far again? Or because my heart was running full steam? Or because I talked too much? Or the after-effects of the position I was in ~ akin to a tilt-table test? Or the actual cleaning ~ the release of bacteria, the micro-abrasions? I’m always trying to tease apart cause and effect, but there are too many confounding variables and logic doesn’t lend itself to this disease. Logically, with more rest and more sleep, with a better diet and fewer toxins, with less stress and more mindful awareness, I should be feeling better than I ever have. But my temperance is obviously outweighed by the marauding lifestyle of my viral invaders and the intemperate rage of my immune system.

Happily, my hygienist said she thought it would be fine to push my next cleaning out a year since I am taking such good care of my teeth. There is nothing like a chronic illness to get you to floss every day and never go without your mouth guard ~ I don’t want any preventable problems complicating my current situation.

I didn’t feel as bad the next day, but then my period came. This is now my fourth almost-painless period since coming off the pill in December and, believe you me, I am rejoicing every minute of fearless, crampless menstruation. I spent SO many years dreading the monthly… planning my life around it… so, this positive change in my body does not go unnoticed. However, the ME/CFS symptoms definitely flare up each month ~ the usual uterine pain has just walked around to my lower back. And my coccyx: the absolute southern-most point of my spine is killing me. That baffles me.

Since getting my period, I have had a headache. I haven’t had a headache in so long ~ especially one that goes to sleep with me and is still there when I wake. I’m not happy with this bedfellow ~ I was hoping, since the husband and dogs have been relegated to different beds, I would only be sleeping with the dust mites that could survive my weekly washing ~ so, again, I’m trying to analyse the cause: Is the headache from my period? The new Seriphos supplement? The new licorice tea? Pollen allergies? Neck tension? Bad sleep? But, all other symptoms have increased, too: I’ve had more of the usual inflamed, painful, stiff muscles. The hot/cold issues. Feeling like I’m coming down with something… sore throat … you all know the deal. And I had two nights of slight night sweats. This struck the fear of god into me. Besides the muscle issues and heavy dragging exhaustion, these are symptoms that had left me. Yesterday, I started begging aloud: Please don’t let it come back, PLEASEPLEASEPLEASE...

For a few months I have been watching the texture of my skin change. It’s bumpy ~ different than anything I’ve experienced in 40 years. I was convinced it was my extremely high-fat diet, so I ignored it. Who cares? I have bigger fish to fry. But it’s getting steadily more alarming and during these last few weeks of hormonal fluctuations, it has bloomed into an acne-braille mash-up that, when coupled with the lack of muscle tone, weight gain, sleep-deprived eyes, thin hair showing a year’s worth of grown out roots (with so much grey!), has me recoiling from mirrors. I told my doctor that I felt like that scene in The Exorcist where the skin on the girl’s stomach spells out “help me“. It was like the needle slid across the record… The Good Doctor and her trainee internist looked at me with heads cocked and eyebrows furrowed and I could hear the clock’s second hand ticking around… “Oh, nevermind,” I said. “I just mean my body is trying to tell me something.” My point was, there has to be a logical explanation. My body is pushing  from the inside out into every pore and I should be able to read its message. I should, after all these years, know its language.

So creepy... So sorry.

So creepy… So sorry.

A few happy notes to help get that image out of your head: our Cherry Blossom tree is in full bloom, raining salubrious pink petals all over the garden. My sleep is ever so slightly better. I’m starting Chinese herbs next week and will probably add back legumes to my diet after that. I managed to organise all of our finances for tax time. My husband’s sleep apnea is nothing to worry about. A bird just hopped by my window with a tuft of what was obviously my dog’s golden hair held in its beak and I’m thrilled to think, after how much he has terrorised them, that his fur will do a little community service in a nest somewhere. My friend Z. and her beautiful baby girl came to visit yesterday. My family is healthy. And Game of Thrones has started.

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9 thoughts on “all the logic and language and loss

  1. Anna says:

    If you EVER need a ride anywhere, whether D is available or not, please let me know. It’s no problem if I need to leave work for a bit. I am more than happy and willing. xo

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  2. Stacie says:

    I think your headache might be from your dental visit, just keeping your mouth open that long. That was my experience anyway…jaw open too long, muscle spasms and horrible horrible headache for a few days.

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  3. Stacie says:

    As for your bumpy skin, I’ve read other people say they have noticed their “chicken skin” and I never knew what they meant until my skin started changing too! So, it’s not just you!

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    • E. Milo says:

      No way! I would think chicken skin would just mean that you are getting old or maybe muscle deconditioning made it flappy (I have those things, too, by the way ;)), but maybe other people experience this braille thing? Maybe it is lack of movement and lack of fresh air and sunshine and lack of lymph drainage… who knows? Maybe just hormonal changes… I’m probably going to walk right into menopause and then have a whole new set of issues!

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  4. Curiosity says:

    My skin is yelling at me too. Haven’t figure out why either.

    Be kind to yourself as you trial and error through the process of learning to balance activity levels. It’s not easy. And you will learn over time what you can try on a good day and what is too much even then. …And then eventually, I hear people even stop foolishly trying to do that stuff regardless. …So I hear. From other people. Who have managed that.

    I have issues with dental appointments too, but I’m pretty sure for me it’s the talking and the noise.

    Sorry you’ve had a downturn. Take good care of yourself.

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  5. I’m so sorry you’re struggling in a slump. I hope you start to pick up really soon. It’s so up and down this illness isn’t it? I had a real slump after a dental appointment a few months ago. You can read about my experience in this post on my blog: http://myjourneythrume.wordpress.com/?s=dentist&submit=Search
    I had really bad myalgia pain, horrible headache (that went to sleep with me and woke up with me as you describe yours) and increased fatigue after the dental visit. I spoke to my specialist about it and he said that dentist visits often trigger adverse reactions in ME / CFS and slumps. He said it’s part of the overactive stress response. That although like you say, I wasn’t knowingly overly anxious about the appointment, but it’s the subconscious stress that causes the problem. So don’t beat yourself up about driving etc,I imagine a lot of your symptoms are related to the dentist clean itself. Well that’s what I think from the experience I had. Regardless of the cause, I really hope you start to pick up soon.

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  6. […] visit; saw second sleep doctor; had the 4 best days between September, 2012 and now. April: Got teeth cleaned; started seeing wonderful physical therapist; started the awful process of getting an oral […]

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