6 Word Stories Pt. 28

If I’ve done nothing else this week, at least I’ll have put together this post. I’m still very tired- POTS is kicking my ass, as a few of the Stories imply. I’m trying to keep on schedule with friend and church and this blog, but I seem to be having poor luck. I miss my routine, but I can’t keep up with it right now, so I’m going to celebrate small victories like this!

Happy news, I registered for classes to pursue a Bachelor’s Degree. I’ve been out of school for more than 5 years, so I’m a little nervous, but very excited!

So here they are, 7 6 Word Stories:

  • Watched a season in one day.
  • I started today with negative spoons.
  • That feeling after finishing a project.
  • Running water never fails to soothe.
  • I’d rather hide than make decisions
  • I’m only tired when it’s inconvenient
  • My chronic illness is chronically exhausting

Hope you all have a nice weekend, St. Louis weather says it’ll either snow or be in the seventies, so wish us luck.

4 Reasons There’s No Post Today

I’ve been having a tough week, health-wise (see Monday’s missing post as an example), but I figured I could leave you with a short bit of dark humor

1. I think my head might explode: I have the headache from hell, and since it’s in my neck too, I’m having a hard time convincing my anxiety that it’s not meningitis. Also, my cat Spike is a mother hen when I don’t feel good. It’s sweet, except that he’s 18 pounds and he insists on constantly touching my face.

2. I keep falling asleep: And not just in inappropriate ways like when I’m laying down. Sitting up is fair game too. You know the warning they put on NyQuil about not operating heavy machinery? I need that on me.

3. The world is spinning: Since I started physical therapy a few weeks ago, my POTS has been in a consistent flare. It’s depressing that 7 minutes of laying down exercise can affect me this badly. I’m eating tons of salt, like the experts recommend, but my I can’t really feel my face anymore…

4. My hands are shaking: Another POTS symptom, it’s because my blood sugar is all over the place. My body goes into full-on trembling shaky sweaty rebellion if I don’t eat exactly every 3 hours. I never thought my pancreas could hold me hostage, but here we are. Who knows, maybe next week my spleen will demand $10000 in unmarked bills.

Thanks for stopping by, and I hope your bodies feel better than mine.

6 Word Stories pt. 27

So it’s been a while… And the worst part is, it’s not like I haven’t been writing my 6-word stories, it’s just that two weeks in a row, I bolted up out of a dead sleep at about 2am on Saturday morning realizing that I haven’t written a blog post. I then immediately fall back asleep, which is less than useful.

I’ve had a long couple of weeks. I started physical therapy, which makes my POTS flare, which means I’m ‘fall asleep sitting up’ exhausted. My heart rate is also in the 150s which makes me feel like I’ve had 5 shots of espresso one after the other. Luckily, I found a glut of gardening shows on Netflix, so I can just lie on the couch and stare at the TV when necessary.

So with the whole ‘skipping two weeks of posts’ thing, I’m going to leave you with The Best Of March’s Stories. Thanks for reading!

  • I started today with negative spoons.
  • Oh where has my ambition gone?
  • So tired. I blame Daylight Savings.
  • A thousand earplugs are not enough.
  • After too much socializing, it’s naptime.
  • Just for today, I’m not overthinking.
  • It’s hard to describe my feelings.

Well, there we go! My last few weeks in 42 words. Sorry for the missed week, but if you ever feel like you’re in 6 Word Story withdrawal, my Tumblr blog, 6 Word Autism is updated daily!

Hope you all have a great first week of Spring!

Hope

I’m back in Physical Therapy!

This is exciting, folks, because after a few more weeks of hip strengthening, I get to move on to the good stuff: Exercise Therapy!

As I think I’ve mentioned before, I have a neurological condition, a type of Dysautonomia call Postural Orthostatic Tachycardia Syndrome. I challenge you to say that three times fast. It’s impossible, which is why we tend to refer to it as POTS.

It’s a problem with my Autonomic Nervous System, which causes body functions like heart rate, digestion, and blood pressure to function incorrectly. My biggest issue is that my body doesn’t pump blood efficiently, and often times I end up with too much blood pooling in my legs and feet, and not enough blood in my heart and brain.

Do you know what happens when there’s not enough blood in your brain?

You faint. And in the case of people like me who have POTS, you faint a lot. I have trouble stand or walking for any period of time, because my heart rate skyrockets, I get incredibly dizzy, and if I don’t find a place to sit fast, you guessed it, I’m on the floor.

So what does this have to do with Physical Therapy?

Regular exercise is one of the best things for POTS, but it’s problematic because exercise raises your heart rate and raises your fainting risk, and no one wants you to faint on a treadmill.

I’ve tried to start exercising on my own before, with little success, which is why I’m so excited to start the Levine Exercise Protocol with my physical therapist.

The idea of it fills me with hope.

I’ve been severely disabled by POTS for years now, and if exercise therapy can get me healthier and keep me stable, there are so many things that I can do!

I was an active person. I was a running-jumping-climbing trees sort of kid, and as an adult, there have been so many things that I want to do- so many things that I want to try- if only POTS wasn’t holding me back.

Jess and I have been making a list, which includes but is not limited to: hiking, rock climbing, curling, ice skating, disk golf, longboarding, and gardening.

I’ve been vibrating with excitement. The whole idea of exercising freaks me out though, because raising my heart rate is so uncomfortable. But the idea of all the things that I could do is starting to smother that anxiety.

I’ve made a good life for myself that matches my abilities. I knit, I play board games, I read. And for the most part, I’m satisfied with all of these, although being so sedentary makes me sad sometimes. On nice days I so wish that I could be out in the sunshine, doing more than just sitting.

And now that there’s a light at the end of the tunnel, I’m letting myself hope. It won’t fix me, but even raising my physical abilities slightly opens so many doors.

I know from experience that this is going to be hard. I’m going to be utterly miserable in the beginning, and I won’t want to continue, which is partially why I’m putting my feelings out there for the whole internet to see. Hopefully coming back here and seeing my optimistic rantings can blast through the sucky parts so I can remember how excited past me was.

So. To crabby, exhausted, future me: remember the future that we want, and most importantly, have hope!

6 Word Story pt. 25

So I didn’t do a 6 Word Story roundup last week. In my defense, most of the stories would have gone something like ‘ouch, pain, naptime, where’s my ice?’, and that’s not exciting for anyone. What is exciting (at least for me!) is that I’m feeling a lot better. On Thursday, I didn’t use my cane for a whole day, which is a big deal considering I’ve been using it for almost 7 months. Fingers crossed, but it looks like this is one medical problem that will resolve itself!

No more surgeries, as far as I know, so stay tuned for business as usual!

 

  • Post surgery tradition is a stuffie.
  • Self, platonic, and romantic are all love.
  • Nothing distracts me from the pain.
  • Nap like you don’t even care.
  • Rain rain go away. No. Seriously.
  • Smelling books is a sensory experience.
  • Today I walked without my cane!!!

 

Adventures in Surgery

Waking up from surgery is weird.

Everything around you is beeping, you’re groggy, and if you wear contacts like me, you’re totally blind.

As you’re trying to figure out what hurts where, the doctor comes in to talk to you, and you’re trying as hard as you can focus, because surgery is unpredictable, and last time you had a post-surgery doctor talk, you found out that you unexpectedly lost an appendix.

Collateral damage, they called it.

As I sat there, waiting, I realized that I was expecting the worst. Which makes sense when you go into a procedure not sure what you’re going to find. This time, the worst case scenario would have been that the surgeon found nothing visibly wrong, and decided to do a nerve graft in hopes that it would give me some relief.

Nerve graft is a very neat and polite word for a violent procedure. It involves severing a nerve, burying the ends into the surrounding muscle fibers, and slapping some cadaver tissue on top so the nerves can’t re-grow.

This is what I was expecting when I woke up.

And I realize that this makes sense. As a person with chronic health issues, I’m programmed for everything to be difficult. To have to fight tooth and nails for answers that don’t exist. My medical experience is trying new things in hopes that they do something. Anything.

Nothing is ever straightforward. You’re experiencing X because of Y, and Z is what we’re going to do to fix it. No. This doesn’t happen. That’s not what it means to be a spoonie*.

In medical school, young doctors learn a saying ‘When you hear hoofbeats, think horses, not zebras’. It teaches them that 99.9% of the time, the most obvious and straightforward answer is the right one. The majority of people are horses.

I am a zebra.

So as I sat, as a zebra, in my hospital bed, I braced myself for the worst. Grey answers, no answers, only a guess to why I had been in pain for almost 9 months. No guarantee that any amount of surgery would every relieve my pain.

The surgeon started talking and oh man, was I surprised. There was a straightforward answer for my pain: a major sensory nerve was being compressed by a large tendon. There was an easy fix: they manipulated the nerve and got it out from under the tendon. Result: total pain relief (once the awkwardly placed incision healed).

Blew. My. Mind.

I didn’t realize how good it feels to have an answer. I can’t explain the feelings of validation when a doctor says “Yes, there was a good reason for your pain, there wasn’t much that you could do to manage it, and you did everything right.” I think vindicated might be an appropriate word.

My pain is vindicated.

I am vindicated.

And I am on the road to a full recovery.

*a word for someone who lives with chronic illness. See Spoon Theory 

For the Neurodivergent version, see reticulating splines

 

 

Plumbing

I often imagine my energy reserves a large basin that funnels my daily energy where it needs to go. In my mind, the energy looks shimmery and silver, glinting whenever it hits the light.

When my reserve is full, everything is good. I feel like the world is my oyster, and I can do anything and everything. This feeling is brief and fleeting, because from the moment my eyes open, the fluid starts getting sucked away, and I have little say in where it goes.

Each part of me requires its own set of tubes, and the older I get it seems, the more there are. The ones that draw most heavily are the tubes labeled Autism, POTS and, Mental Health.

As the energy shifts from shimmering silver to a matte purple, gravity pulls it down the mental health pipes. It pulls enough drops to make sure I take my meds, another few drops toward meeting my food exchanges and following my meal plan. Yet more drops into the well of self-care.

Already I am tired.

POTS rejects the pull of purple and makes a subtle change from iridescent silver, to gun-metal grey. This liquid leaks rather than drips, oozing down chutes that prevent me from fainting. The ironic thing about this is that in trying to give me energy, my body steals more than its share from my reserve.

The autism energy oozes, never staying color for more than a handful of seconds. It squeezes its way through narrow pipes, in an attempt to balance my sensory input, understand and imitate social behavior, and to do things like remember where my phone is (in my hand), how to make coffee (in my defense, the filters were in the wrong place), and figure out if I’m hungry or not (I am, I think?).

After all of this, there is a spoonful left in the bottom of the tank. Just enough to get myself to bed, and prepare for tomorrow.

I wish I knew how full the tank would be when I wake up. Some days there’s an excess, and I can take a walk, and some days I’m scraping the bottom before lunch, and I won’t be able to stand for the rest of the day.

My energy plumbing is a little broken, but it is mine. Some days I’d like to borrow yours, but I know in my heart that it wouldn’t be the same. My plumbing, with its tubes and its pipes, is as much a part of me as my soul. Both can be problematic, but hey, so am I.

 

Anti-Resolution 2018

Happy New Years! It’s 2018, the Year of the Dog and the year of the Winter Olympics in Pyeongchang South Korea! We all know that the New Year comes with the ball dropping, lots of sensory unfriendly fireworks, and the worst thing- New Years Resolutions.

I hate resolutions. Every year that I’ve tried to make resolutions, I’ve felt terrible pressure to always be working towards them, and terrible guilt when I fail. That’s a terrible way to start a new year, right?

In treatment, there’s a big focus on making goals, and as I’m sure you can guess, that’s didn’t go so well for me. I got lucky though, I work with an Occupational Therapist, and she suggested rather than put the focus on making goals, I should think about things I want in my life, but don’t have. Ways that I want life to be different. Then I could find ways to make those things a reality (which I know is just a different way of saying goals, but hey, it works for me.)

So instead of posting about my New Years Resolutions with you, I’m going to share what I want to be different in 2018

  1. I want to be more independent. I didn’t realize until recently that I don’t really do things by myself. I rarely leave the house alone, mostly because I’m worried about autism problems, like getting lost, becoming nonverbal, and having meltdowns. Going new places, and going places that trigger sensory overload (like grocery stores- why must your fluorescent lights be so bright and everything be so loud?) I feel like a need a buddy just in case something goes wrong, and it can be very limiting. So here’s hoping that 2018 is the year of independence!
  2. I want to be more involved in my community. I wasn’t diagnosed with Autism until 2016 when I was 28, and it wasn’t until almost a year later that I, with great joy, discovered the vibrant and brilliant autistic online community. I immediately knew that this was something that I wanted to be a part of, even though I rarely used social media in my “real” life. I’ve taken small steps, this blog being one of them, but I want more. I want to educate, I want to be an advocate, I want to lead.  I’m planning on continuing to do what I’m doing and to look for opportunities and contribute and connect.
  3. I want my health to be better. I’ve mentioned before that not only do I have a neurological condition called Dysautonomia (POTS is the specific syndrome), I’m also dealing with some hip/nerve issues that we haven’t really found an answer for yet. They’re both highly limiting. There’s not a lot that I can proactively do about my hip, but once it’s doing better, there’s a lot I can do for the POTS, it can’t be cured, but I can reduce the symptoms. Right now, I can stand for about 2 minutes, and walk for about 5, before I become at risk for fainting. There’s a physical therapy protocol that I’m going to try, so I can get back to doing things that I love, like hiking, longboarding, and rock climbing.
  4. I want to be more comfortable with my gender. Right now, I identify as Nonbinary, which is a word I love, because it gives me so many options. I spent so much time being frustrated because I knew that I wasn’t a girl, but I didn’t think that I was male enough to be transgender. I’m happily settled with the Nonbinary identifier, but one thing I haven’t figured out yet is pronouns. She/her/hers makes me uncomfortable, but they/them/theirs bothers the grammar nerd that still lives within me. Xe and Ey and everything else don’t seem to fit either, and I’m not sure that I’m boy enough to use he/his. So this year, I want to figure out my pronouns. This year I want to figure out what will be necessary to help me deal with dysphoria. This year, I want to be more comfortable with who I am.

I know sharing resolutions can be sort of stressful, but if you’ve got any that you’ve like to talk about or share, I’d love to hear them!

Torn By Caution

I think that I’ve mentioned here and there that I’ve got some medical issues. I’m dealing with two right now.

One is, I’m having a lot of pain and numbness and tingling in my left leg, all the way up to my hip and lower back. After 7 months of pain, 5 different doctors, 4 MRI’s, and 3 injections, we’re at the final option: surgery.

The second problem is chronic, and it’s called POTS. It’s a neurological condition that’s caused by dysfunction of the autonomic nervous system, and I’ve been dealing with it for almost a decade. I’ve done all the tests, I’ve tried all the meds, I’ve suffered through all of the therapies. Except one.

Fluid therapy. My neurologist isn’t really a fan of it, and he has some valid reason, but we’ve run out of things to try and improve my quality of life. This therapy involves getting a liter or two of IV saline a few days a week. Problem is, getting IVs put in that often is hell on your veins, and often results in blowing out a lot of useful veins. So we’ve decided to put in a port, and what does that mean? Surgery

I’ve been out of school for about 6 years, and this spring, I planned to take a class or two at my local community college. I was really excited because if these classes went well, I was going to start the process of getting a Bachelors.

But there’s an issue here, and I bet you’ve noticed it. I need to have two surgeries, and they’re both going to be during the first month of classes. So what do I do? I’m torn. I want to go back to school so badly. I’m ready to move forward with my life and this is the way I’m going to do it. But if I’m couch-bound for a week both times, my work will suffer. If I’m on pain medication and unable to think straight, my work will suffer. If one or both of the surgeries cause a POTS flare, my work will suffer.

So what do I do? Be cautious and realistic by dropping my classes? Or follow my heart and hope that it will work out? I just don’t know.