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 times 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 appropriate 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.

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’s 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!!!

 

6 Word Stories pt. 18

Well, at the beginning of the week I had zero upcoming surgeries, and now I have two. Both of them are good, one is the start of a therapy that should make a huge difference for my POTS, and the second should finally resolve the hip pain I’ve been having, but boy, after months of nothing happening, it’s all coming together! I also had a lovely birthday, and I think I’m handling being old (aka, 30, really well).

  • Doctors need to stop touching me
  • I guess being old isn’t awful
  • Other cane users smile at me
  • Everything I wrapped looks like potatoes
  • My health keeps me from life
  • Pet a puppy, best day ever!
  • Do your cats just…stare sometimes?

I hope everyone has a nice holiday, whatever it is that you do or don’t celebrate!

Faint Haiku’s

I have a neurological disorder called Dysautonomia, specifically a type called Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia means Autonomic Nervous System Dysfunction, and POTS means that when I go from sitting to standing, my heart rate jumps, causing me to become dizzy, and eventually faint. I developed Dysautonomia in my early 20’s, and its had a serious impact on my life

 

A Collection of Faint Haiku’s 

 

My feet on the floor

Heart pounds, head spins. Dizziness.

Be careful not to fall

 

Tachycardia

Heart rate rises, sit down now

No one likes to faint

 

How to stop a flair?

Compression socks and saline

Tons of sodium

 

Help, I’m going down

A grey out, black out, pass out

I’m on the floor now

 

The room starts to spin

Not enough blood in my brain

Profound nerve damage