Guinea Pig to World, “Shit happens”

I haven’t been sleeping well, or at all it feels like, for the past couple of months.  Pain still wakes me up occasionally, but it’s not the problem it used to be since I have a guy who takes care of that now.  I’m awake until 4 or 5 am most mornings, exhausted way before then, but my brain won’t let my body sleep.  When I finally do sleep, I wake up shortly after in a state of panic and I’m completely disoriented, like I had a vivid nightmare, but I don’t remember dreaming at all.  I’ll do this about three times before I get up to start my day, usually around 8 am, giving me a grand total of 3 hours of seriously interrupted sleep.  Sometimes I can sneak a nap in later in the day, but the same thing happens.  It’s weird, but I guess shit happens.

I’m not sure at what point “shit happens” became my philosophy on life, though I have a sneaking suspicion that it happened some time after my disease was given its first name. When I was inducted into the wild world of neurological disorders, the hows and whys were and still are elusive. There are plenty of theories, but nothing solid. So, again, “shit happens”.

The more I learn about the nervous system, the more unlikely it seems that anything can actually be done (I forgot where I read “If there’s one doctor you definitely don’t want to receive a diagnosis from, it’s a neurologist”, totally true) , other than managing the symptoms and trying to make modifications around the house so I don’t kill myself. My primary care doctor has taken charge of symptom management,  yet I’m still asked to see my neurologist.  I’ve emailed him, I’ve had tests done, but haven’t had an actual appointment since summer, despite being told to schedule an appointment at least a half dozen times since then.

The new version of dysphagia started a new chapter,  in what has to be the worst Choose Your Own Adventure book ever written. And, of course there’s something else. Uncontrollable crying. I’m not talking about being sad, angry, frustrated, and then crying uncontrollably. I start crying when I feel perfectly content, with no trigger, no warning, and for absolutely no reason.

Today I was playing Devilian (think Diablo 3 meets Tera online), and just like a switch had been flipped, I started crying like someone had killed my puppy. The first time it happened was at the grocery store before NYE. I was standing by the yogurt and bam!, my eyes were flooding and my face was spazing. About the only thing I could say was, what the fuck? I told my husband I was fine, made a b-line for the b-room, and after less than 5 minutes it was over. I felt fine, although majorly confused. Crying in public is more embarrassing than passing out in public. But hey, shit happens.

I made a query about this with super doctor, since he’s the only one who won’t say “you’re crying, so you’re obviously depressed”, and he told me there’s this condition called pseudobulbar affect, or pathological crying, and to talk to my neurologist who will say “you’re crying,  so you’re obviously depressed.”

I just updated my symptoms list not too long ago, then my diagnoses to date.  You know what was thinking?  Im-fucking-possible.  There’s no way one person can have this many diseases.  I should’ve bought a powerball ticket, the odds of winning were about the same as the odds of being diagnosed with a billion unrelated things.

8 thoughts on “Guinea Pig to World, “Shit happens”

  1. I’m reminded of a scene in the movie Broadcast News (1987) (great movie), where Holly Hunter spends five minutes every morning on one thing: crying. She makes herself cry at the beginning of every day and gets it all out of her system. Cry therapy — maybe you should try it. 🙂

    Crying is seen as a sad thing, although plenty of people cry when they’re overjoyed. I guess it’s seen as embarrassing because, as adults, it’s something we should’ve outgrown. Babies can cry all they want, but adults, not so much. We’re supposed to control our emotions, so we lock them away or only experience them when we’re alone. Not really the healthy way to go.

    Crying is natural (just like sex). It’s a release mechanism (also just like sex). Believing that people who cry are weak is society’s law, not mine. On the contrary, I think people who allow themselves to cry, whenever they feel like crying, are the ones with courage. It’s not a crime to cry (at least not yet), so I say, let the tears flow. Let it out. Don’t hold back. Just because you can’t see a specific reason for your body’s need for release, doesn’t mean it’s not valid. It doesn’t mean these feelings don’t count.

    Yes, it’s embarrassing to cry in public. It’s also embarrassing to fart or burp in public, but some things cannot be controlled. As long as I’m not naked, there’s not toilet paper stuck to my shoe, and no boogers in my nose, I will do what I want in public, including crying. 🙂

    I’m not trying to say that crying episodes aren’t concerning, but I’d say it was more about grief than adding another illness or symptom to your list. Of course, it could also be a side effect of one or all of your medications. If that’s the case, then you’ll have to decide if the benefits of the medication outweigh these kinds of side effects.

    Dr. House has spoken. 🙂

    Liked by 1 person

    • Crying does feel good, and normally I can feel the build up and know it’s time to listen to some sad-sap music to make it an epic, soul cleansing experience.

      Farting in public can be fun, particularly when you lurk one aisle over from the stink bomb. It’s only a matter of time before someone asks “what died in here?”. But yes, I do get what you’re saying, and it is a bit obnoxious that crying is viewed as something we shouldn’t allow ourselves to do outside of privacy.

      I need to take a closer look at cimzia, because a lot of this started right around the time I started it, now that I think about it. I probably fell asleep before I got through the first half of the side effects list. I’ll just blame that. And probably follow-up with neuro to make everyone happy….it’s only one day out of my life. Shipooie.

      Liked by 1 person

  2. My favorite doc (a neurosurgeon, even scarier to get a referral for) says his first rule in tackling any patient’s condition is making sure they are sleeping enough.

    From reading your posts, I prescribe for you to get comfy ready for bed, lie down with your headphones on, go to RelicRadio.com and look at the home page, take your pick (I recommend Strange Tales for you), shut your eyes and listen … with your particular kind of wit I am almost sure you will enjoy it and be able to relax your mind enough to sleep great.

    works great for me every night! Writing in haste just to get you the info for tonight you poor sleep forced kid!
    Vivia

    Liked by 1 person

      • Lack of sleep is definitely knocking some screws loose. I worked the sleep hygiene angle, tried trazodone, gabapentin, then the doctor at the sleep clinic basically said “she’s in pain, you idiots, treat that shit.”, and once they did, sleep was decent for the most part. This’ll pass eventually, I hope. It’s just a matter of remembering which end is up for the time being. 🙂

        I’m at relic radio now, holy wow, this is frickin awesome! Thank you, thank you, thank you for the introduction!

        Like

  3. So glad! If you tell me what genres you prefer I can give you titles for the esp good stuff. SUSPENSE (1942-62) is a great program to start with, with some very famous episodes. Full orchestra, sound effects wizards, and the best directors and actors in the business make for sublime theater of the imagination.

    The great part for sleep is you just about get through one or two half hour shows before succumbing to the sandman. (Many of the shows tell you to turn the lights out and shut your eyes.)

    Don’t worry, I can steer you away from the genre that includes scary insects!

    Check out archive.org sometime, imo the best place on the web for … everything. no kidding.

    Like

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