The Pain Scale

“And can you rate your pain on a scale of 1-10?”

I don’t know about you, but for me, this scale is not useful AT ALL. I’ve gotta tell you that the yellow face looks more constipated than in pain, and the utter horrible face seems more like he’s upset that his flight got canceled and he’s going to have to eat at Chile’s.

I’ve been thinking about pain a lot recently, mostly because I’ve been experiencing varying amounts of it recently. Last year, my neurologist began to suspect that some of my symptoms (extra high heart rate, ringing in the ear, and postural headaches) might be caused by a spinal fluid leak. We took a bit of a gamble and decided to try a procedure called a blood patch that would fix the leak if there was one. And it worked! The procedure itself was painful, I was couchbound for a few days and it took a week or so to feel normal again, but it worked and it was worth it.

As I implied earlier, I’ve been in some pain. You may have even inferred that I had a new leak. This is all true, but it’s not the reason that I’ve been in so much pain- this time around, the blood patch wasn’t nearly as straightforward or worth it.

I won’t describe how a blood patch works (you can google it if you want) because it makes some people squeamish, but some degree of pain and discomfort is normal. I can handle normal. The first 48 hours after seemed pretty normal, but normal disappeared pretty fast after that.

At one point I rated my pain as an 8, which may not sound like a bit deal until you hear this fun fact about me. Several years ago, I was in the emergency room with GI pain. The lady at the desk saw how much pain I was in and got into triage almost immediately so they could get me admitted and on some pain medication.

I sat in a chair, and a nurse starts talking to me, and I pass out. I wake up almost immediately and then pass out again. I struggle to stay conscious the whole time I’m being interviewed, and at the end of it, the nurse asks me to rate my pain, and I rate it a 9. The nurse informs me that if you’re in so much pain that you can’t stay conscious, that is always a 10.

As I said, an 8 is a big deal for me. The 8 lasted 24 hours. The pain has been slowly drifting down the number line, but still, it’s been almost a month, and I’m tired of it.

I find it odd how I can tolerate chronic long term pain no problem. I dealt with an entrapped nerve for 10 months, I’ve had PCOS for more than a decade. But acute pain? Discomfort? I can’t handle even a little.

I’ve heard that this is an autism thing. Folks like me are either perceived as feeling too much, or not enough. But it’s so hard to tell because I can’t really describe the intricacies of my pain to you as much as you can describe yours to me. We all assume that our 5/10 pain is the same as someone else’s 5/10. Be we can be completely wrong! Mine could be burning and yours could be stinging, mine could aching and yours could be stabbing. It hurts my head, I swear.

I thought I’d leave you with my favorite pain scale, use it as you will

Waiting Waiting Waiting

*this is a vent in the purest sense of the word. I’m hoping that talking through how I’m feeling might grant me some insight*

Frustrated. Angry. Confused. Scared. Upset.

These are all “feelings” words that describe me today. Okay, not just today. Maybe its more like a few weeks. Or a decade. Or my whole life.

I’ve spent the last decade or so living with a chronic illness, and I like to think that by this point I’m pretty good at dealing with all things health-related. I’ve now realized that this is a lie. I’ve been lying to myself without knowing it.

There are, in my opinion, two major parts to being ill- the Physical and the Mental.

When it comes to POTS, I’ve got both of them down. I’m used to my heart rate jumping high, I’m used to being dizzy, and I’m used to my body being unpredictable (POTS affects your Autonomic Nervous System, which controls everything from how well your body digests food, to how efficiently it pumps blood through your body). And when it comes to the mental part, I can handle feeling useless, feeling frustrated that my doctor isn’t calling me back or that test results are taking forever. I’m even used to not getting to do things that I want (mostly things that involve a lot of standing).

The POTS stuff, as I’m sure you’ve realized is just background for what’s happening with me now.

About 6 months ago, I started to experience dyspnea, which is med-speak for ‘I can’t breathe when I lay down”. Thanks to POTS, I didn’t panic. I’m used to weird stuff happening to my body, remember? I figured that whatever it was transient and would disappear as soon as it began. This, my friends, was tragically optimistic of me.

I’m going to gloss over the first pulmonologist that I saw, the one who told me that I had Respiratory Muscle Weakness, a pretty severe case, and then refused to call me back. For a month! It sure feels like a kick to the gut when the person who’s supposed to be taking care of your health thinks that you’re too complicated and pawns you off on someone else.

*deep breath*

The doctor situation is better now. I’ve got smart specialists who communicate well. I’m so thankful for this, but I’m still frustrated and angry and confused and scared and upset. If I felt this awful when I was getting my POTS diagnosis, then I clearly must have blocked it out because it is damn near unbearable.

It’s the waiting that really gets to me. I’ve spent this past few weeks on the edge of my seat, waiting for test results to come in, and for doctors to call me back. And every time a test does come back negative, half of me is overjoyed that I don’t have Myasthenia Gravis or something like that, but the over half of my brain whispers to me that at least it would have been an answer.

So that’s all of my insight, every last piece. And what have I learned? I know that I don’t handle the unknown very well (this should not be a surprise to any of us though). I know that doctors who treat me like I’m a nuisance make me a tiny bit homicidal. Lastly (and this is the big one, I think) I realized that for the first time in the entirety of my adulthood, I’m really happy with my life, and the idea of some medical condition fucking it up is what’s making me frustrated and angry and confused and scared and upset.

So I’m going to keep my self grounded. Maybe do some self-care. I will not obsess about something I can’t change. And most importantly I’m going to keep my fingers crossed for an answer that’s straightforward and easy to treat. Something the exact opposite of POTS.

And until then, I’m going to BREATH

 

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.

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!!!

 

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 it’s 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