Let’s talk about Sx, baby.

Let's talk about you and me.

Let’s talk about you and me.

Symptoms. I’ve got another new small list to add to the ever-growing list that my neurologist has (which still doesn’t seem to cover it,  but I don’t want to be viewed as a hypochondriac when knowing a just anxiety can easily be viewed as such). Truly I cannot keep up with them well anymore. I’ve tried keeping track on Patients Like Me but now there are so many lapses in the maintenance of my online “chart” that I feel a despair in going back.

Don’t let that be an advertisement against the site; I am going back there shortly to look at comments on D3 in the forum. I’ve been taking 50,000iu daily for the last few months and I want to ensure I’m not overdoing it… but really the side effects of too much are so close to side effects I get now from other medications (and having MS) that I wonder. I know that I didn’t get sick once this winter, despite being around plenty of flu cases and small children — I’m betting the megadose of D3 helped there. And now that I’m taking Gilenya I’ll need to be just as — if not even more — stewardly of my immune system.

But back to symptoms. Let’s be honest — each one deserves its own biography posted here, and I imagine for many of you that is also true. I am not bragging when I admit it possible to list symptoms from brain to feet that deserve their own blog post. I am doing this because I am tired of feeling ashamed that most of my experiences are easier to live with than they are to explain.

  • Sometime in the years between 14 and 15, the attacks of nerve pain and paralysis through my pelvis began. They stopped over time but had already become part of my “normal” when a doctor called them simply “night terrors.” I did not start my period until I was 20. In all honesty, my pelvis should have a book and biopic. As a fully grown (I think) person it’s no surprise that I threw myself into things like sexual health education. And porn. Oops, the porn. Don’t get excited, it was graphic design.

    I once had professional reason to turn this Caucasian model into an Asian model. #notpoud

    I once had professional reason to turn this Caucasian model into an Asian model. #notpoud

  • In 2003 an exacerbation left me wondering for years if maybe I hadn’t died during it, because real life has not seemed the same since. This is not the dramatic in me — I genuinely spent years not believing I wasn’t dead. I am dizzy all the time and still cannot look up without perchancing a fall. The sensations of angling my skull on its spine are horrible, but they are my “normal” and I am not not living my life because I can’t throw my head back when I laugh. When I go grocery shopping sometimes I will put a bottle of wine in my cart just to sell the idea that I’m a drunk lady instead of a disabled one.
  • In 2003 the diplopia started and gradually worsened to include constant eyeball seizing. I take a lot of Neurontin. Eye pain and headaches are daily.
  • Fatigue hits daily like a bear and I know now to shut up and wait for the plateau to drop; it always does. I’m learning how not to confuse it with a serious glucose drop.
  • Copious, trucker-impressing belching. Ask my family and friends if it isn’t a disgustingly impressive thing.
  • “Cog Fog.” Like a motha. Like my brain lives inside the soft palate of a cottonmouth snake. I don’t even know for how many years it’s been getting worse. 
  • New for my doctor? Extreme confusion, swallowing and drooling. Classy.
Betcha look twice now!

Betcha look twice now!

These are my main “normals.” You might see me in public and not need or want to look twice; knowing this helps me be kinder to strangers. Invisible illnesses are the ultimate in glass houses — maybe an openness in as simple a place as the internet might help the rocks from getting thrown. It can at least make me feel better. Do you have completely invisible symptoms that make you constantly feel like a liar?

    • Rachelle
    • March 28th, 2013

    You have my sympathy, and probably more empathy than you know. I know the symptoms I’m sharing with you are temporary (pregnancy, unlike MS has a known cause, is always temporary, and delivery pretty much cures it, so I know it’s not the same as having MS), but I can relate to having weird symptoms that make me feel like people think I’m just being dramatic.

    Due to separation of the pubic symphysis in preparation for delivery, I feel like a badly strung marionnette whose legs have been removed, put back on the wrong sides, and then been kicked vigorously in the crotch a few times. Hard and painful to walk.

    Dizziness and fatigue are no stranger to me. I want to go around screaming, “I’m not lazy!” but I don’t have the energy for that.

    The heartburn… the relaxin in my system has turned that flap in my epiglottis into something like an unhinged doggie door. If I eat food, I spend the next six hours swallowing it back down with lots of burning bile. If I don’t eat, I feel like someone’s in my throat trying to weld that doggie door of an epiglottal flap back on with a blowtorch. And there’s a lot of burping (not particularly loud, but definitely persistent and pervasive) going on involuntarily and almost continuously. Mmm… I had a banana and tuna melt for lunch. Remind me not to try that combination again. Seven hours later, it’s still rather unpleasant to re-swallow. I throw up in my mouth so often, I might as well be at a Republican convention.

    I sweat (like dripping off the ends of my hair sweating) anytime I’m vertical. Especially in public. Even in 40-50 degree weather.

    I drool extensively. I should send you the account of my experience with a rather brusque male hygienist trying to get me fitted for an onlay which reads like a sadomasochistic scene from “Saw XVIII 1/2” as he berated me in his slavic accent not to drool so much with a disgusted sneer.

    I also smell like pussy. Nice, healthy pussy, but still… my bits are gearing up for childbirth, so they’re always engorged and lubricated, and I smell like sex. If I shower in the morning, I have to change panties and shower again by noon if I plan to leave the house. Even though Aleks insists nobody else can smell me, I still find that he’s all over me a lot more than usual (and I know it’s not my body with it’s current 47-47-47 measurements, constant grunting when I move, belching and drooling) and even strange men hit on me in public. So, pheromones must be exuded somewhere. And I waddle too slowly to escape unwanted attention these days.

    Not to hijack your post, but to commiserate with you. I did this to myself, and it’s temporary, so it’s not the same as your brain disease… but I can absolutely relate to bizarre, debilitating, and confounding (and often embarrassing) symptoms that are beyond your control and are mostly invisible to others.

    Big hugs. I love you. If you want to get together sometime to whine about symptoms, celebrate small victories people without invisible ailments might not understand, or just grab some pregnancy-and-disease-safe beverage, drop me a line.

    • Rachelle
    • March 28th, 2013

    Oh, and mental fugue? Totally got that, too. See… even forgot to mention it. xo

    • eve
    • April 23rd, 2013

    Yes, at times I feel like my invisible symptoms make me feel like a liar. If we could pick our disease(we wouldn’t choose to be sick) I think I would choose a more visible one. Stupid Disease.

    • Amen, Eve! Nobody wants to be faced with the moral dilemma of judging illnesses against one another like they’re in some kind of terrible Miss America pageant… but by gum I hate feeling like something, anything needs to be there to back up my otherwise ridiculous claims.

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