Dysautonomia

Surviving School

I’m in the midst of my second week of school. A lot has changed: I moved into my first apartment (with roommates, which is new as well), and I’m now a junior. I’m getting into my major classes and enjoying them so far.

In the meantime, I’m still trying to manage my health. My joint pain has gotten worse (again), but I saw a rheumatologist who’s willing to do some tests for Sjogren’s, an autoimmune condition which I may or may not have. I’m taking a low dosage of Prednisone, which could potentially give me more energy if I were to have Sjogren’s.

My theory is that it would give me more energy regardless, since my POTS is probably autoimmune. In any event, it definitely gave me more energy last night. I never have energy in the evenings! I got home from a seven hour day and had energy to do homework! I edited a bit and read five chapters in a book! I didn’t change into pajamas until 9pm!

Me with energy.

Not surprisingly, I’m a little tired this morning. But at least I got things done last night.

I’m hopeful that this rheumatologist will be willing to treat my symptoms, regardless of whether or not I have Sjogren’s. I’m also hopeful that I’ll continue to have a bit more energy and that school continues to go well.

Wishing everyone many spoons!

I went to DC in a Scooter and Didn’t Die

I’m not going to lie: I wasn’t thrilled about going to DC in a scooter.

Not this kind of scooter. (Can you imagine me barreling through DC doing those tricks, though?)

I use a cane when going out. It helps me feel stable, and it gives me something to lean on if I get dizzy.  Mentally, I have no problem whatsoever using my cane, though it took me a little while to come to that conclusion. The only time I’ve ever needed a wheelchair was at Mayo Clinic, when the hallway was spinning and I felt like I couldn’t stand. I felt so helpless having to be pushed in a chair. Since I don’t own a wheelchair that I can push myself (nor have I practiced doing so), I didn’t want to borrow a wheelchair and be pushed in DC. (If you haven’t picked up on this already, I hate being out of control. So of course I get an unpredictable chronic illness, because that’s fun.)

Thankfully, my grandma had an extra scooter available at her house, since she uses one daily herself. At first, I was upset. I’m 19. I didn’t like the fact that I needed a scooter to get around. It is a mobility device, though. Just like my cane. Just like a wheelchair. And it was going to help me go where I needed to go.

So I went. I used the scooter, and survived. I didn’t hit any people (except I bumped into my mom once, but that doesn’t really count, okay?), just inanimate objects, but they should’ve gotten out of the way. 😉 We went to three museums on a warm day, and I know I’d only have been able to make it to one had I been walking.

There were, of course, approximately two million kids running around. I would jerk to a quick stop, or edge around crowds, hoping I didn’t run anyone over.

Don’t worry, the adults were just as bad. Even when they were on their phones or not paying attention to where they were walking, I still didn’t hit them. The scooter ended up saving me a lot of energy overall, and I was able to enjoy the museums which I hadn’t seen in years.

The point is, I survived. It wiped me out, but we all made it out alive and had a lot of fun overall. Also, I didn’t run over anyone’s toes!

 

Dysautonomia International Conference

This past weekend, I went to the Dysautonomia International Conference. I used all of my spoons (plus some) to make it, but I did!

I love getting to hear new research. It’s also wonderful to see doctors who genuinely care and are interested in patients’ views, especially after seeing so many indifferent or downright rude doctors.

The best part, though, is seeing other patients. Sitting on the floor, or taking pills, and exchanging diagnosis stories is normal. After explaining dozens of times what POTS is, it’s so refreshing to be around people who just get it.

I’m looking into several new exercises/exercise techniques, such as swimming and core exercises.These were both mentioned at the conference, and I’m hoping that they’ll help. Exercise is super hard, but definitely worth it.

This will be me.

Anyway, there are more things I have to talk about, but those will have to wait for later. In the meantime, I’ll be awkwardly dancing carrying on.

Carrying On

Okay, so I’m not really dying, but I would like my pain medication to do its job, if that’s not too much to ask. (Also, I have to use a Amy Poehler gif. every chance I get, because she’s awesome.)

While I feel like a pincushion and try yoga, stretching, a TENS unit, mediation, chopping my legs off, life carries on.

There are so many issues going on in my country (‘MURICA), some positive things and some negative. I’ve already discussed some of these issues in my last post. It’s a lot to process.

I’m enjoying my work (editing) and am looking forward to volunteering more with a local pediatric cancer nonprofit. I’m equal parts excited and terrified to start my junior year, because it means “the real world” is fast approaching.

Also, I feel like it should be said that chronic illness is a full-time job, people. Managing to exercise as much as possible, take medication, sort out how to change medication on your own, looking into new treatments, and coping with symptoms is not easy. It is a 24/7 job. It’s like having a kid who screams and yells all the time, and even when you give it what you think it wants, it throws the toy back in your face and continues screaming.

Chronic illness personified.

Things will work out. They always do. I have amazing people in my life who help me and listen. My grandma has lived with pain for years, and deals with it with grace, humor, and honesty; another relative also encourages me and lives with chronic pain. I so appreciate their empathy, and my family and friends’ kindness.

Here’s to a solution and a happy summer!

What are your best tricks when dealing with pain?

What Not to Say to Someone with a Chronic Illness

Let’s face it: chronic illness or not, we’ve all been told something that makes us roll our eyes. Talking to someone with a chronic illness can be difficult if it’s something you haven’t experienced before. While it’s different for every person, and you should talk to each individual person to see what they’re comfortable with discussing, there are a few things you should not say.

  • “You don’t look sick.” This is something that bothers a lot of people within the chronic illness community when said in a way that insinuates you’re not really sick just because you don’t look sick. Not all illnesses/disabilities are visible. If said as a genuine compliment, I think most people would agree that it’s not as bad. Still, I’d recommend saying something not about appearances and more about the person themselves.
  • “Are you sure you’re feeling bad enough to skip hanging out/this concert/skydiving?” When I say I can’t do something, a lot of the time, it’s because my body physically won’t let me. I feel bad when I have to say no to something, but most of the time, it’s because I know my limits. Every now and again, I’m fine with breaking entirely stepping over those limits, but even these times need to be planned.
  • “Have you tried standing on your head/taking this pill my brother’s girlfriend’s mom’s cousin tried/going vegan?” I know you probably mean well, but believe me when I say these suggestions are more often than not unhelpful. Besides, I’ve probably looked up whatever it is you’re suggesting, and have either tried it, or laughed at it knowing it was illegitimate.
  • “It must be nice getting to stay at home so much! I wish I could do that!” Well, just acquire a chronic illness, and all of this can be yours! Seriously. Don’t say this.

Basically, just think before you speak. Ask questions, and treat everyone with decency and respect.

Thanks for reading! Wishing you all many spoons and sending gentle hugs!

No Shame

Last summer, when I tried IV therapy for the first time, I thought the same thing: I’m not bad enough to need this. I felt like a fraud, as if some POTS fairy was going to show up and assess my level of wellness and tell me I wasn’t “bad” enough to need these things.

IV therapy didn’t end up working well enough for me to continue it. So, over this past school year, I ordered a cane. At first, I used a cane that had a chair attached to it, which was more clunky than helpful, even though the idea was cool. Then, I got a cane that was the right height for me, and it helped. I had something to lean on when I felt unbalanced, and I could stand a bit longer without feeling dizzy. Finding non-medicinal things that help me (exercise, fluids, salt, etc.) is a big deal, because it means not having to worry about side-effects.

Instead of worrying about side-effects, I worried about what other people would think of me. (Because of course my brain needs to be worrying about something at all times.) I used my cane at school for the first few times, and people treated me differently, keeping way out of my way, and staring a moment or two longer than normal. No one asked why I was using it, but I felt like people who had seen me before at the bus stop/in classes without a cane were wondering what I was doing with one now. There were a few days where I didn’t use it because of such embarrassment, and I later ended up wishing I had it. I don’t feel sick enough to use this.

Me feeling not “sick enough.”

Newsflash, self: THERE’S NO SUCH THING as “sick enough”/”bad enough”/etc. There is no POTS fairy who’s going to assess me. There is only me deciding what I need to do that’s most beneficial for my health. Screw being embarrassed if a cane helps me go outside and do things.

Another thing: people probably don’t care that much about the cane, because they’re too busy worrying about their own problems. Me and my cane, while an epic duo, aren’t at the center of everyone’s thoughts.

Also, I wear this IMG_1954[1] (Spicy Monkey Spirithood, which benefited the Ronan Thompson Foundation, which is awesome) all the time in public and am not embarrassed, because it’s comfortable, and represents a cause (pediatric cancer awareness) that I’m proud of, and yet I’m embarrassed to use a cane?

Moral of the story? Don’t be ashamed of doing something that helps you. Your health is more important, and, besides, it’s not about how “bad” you are, it’s about what helps you. So, yes, I use my cane. Maybe I’ll use it more next year, maybe I won’t. If my cane is the difference between going out and staying at home, then I’m going to use it.

Have you ever been worried about what others think? How did you get over it?

Hope and Plans

I know, I know: planning is dangerous with a chronic illness. It’s a lesson I’ve learned the hard way many times over. I mean, no one plans on a virus turning into a chronic illness at 16. But, life happens. And, here’s the thing: it sucks. Sometimes I get really mad. Getting mad is okay. It’s normal. I mean, there are a lot of things that have been put on hold.

This post isn’t about that, though. This post is about the things that I am doing. That’s right, I AM DOING THINGS. Right now, I’m what my mom and I would call, a “hype girl.” I am unreasonably excited.

YAY FOR DOING THINGS.

This summer, I’m working as a copy editor and copy writer for an online magazine of sorts. It’s a blessing that I’m able to do this from home, because, as most POTSies know, the summer is the worst for symptoms.

I’ve also started pitching personal essays to magazines. I’ve just started this, and though nothing has come of it yet, I’m really excited about the entire process.

I also am going to Dysautonomia International’s conference in D.C. this summer. I went last summer, and it was so amazing. I mean, we were at lunch, and everyone was taking pills at once, and sitting down, and it was just so lovely to feel understood by people my age. After the conference, I’m going to hopefully try and educate some people at my local hospital about dysautonomia with my mom.

“Harry, here’s some light reading on dysautonomia. Educate yourself.”

Additionally, I’m hopefully going to be volunteering for a pediatric cancer nonprofit. I’m a huge advocate of pediatric cancer awareness, and it’s my dream to work at an organization helping those affected. Of course, it’s my dream to not need to do these things at all, but, until there is a cure, I want to advocate for the kids and the families who have to learn in the worst possible way about the fragility of life.

The point is this: even with POTS, I am doing things. I may not be able to do things the same way as everyone else (hello, sitting while talking to people, using a cane to go out, and avoiding the heat), but I am doing things I love. I know, I’m probably a bright-eyed college student who’s overly optimistic, but I feel like that’s a place I should be in my life right now. I don’t want to be jaded because of my chronic illness.

So, fellow spoonies, please don’t give up. Please know that there are things you can do. Even if the things you do are done differently, even if you have to fight ten times harder than most people to do normal things, work towards a goal, find something you love, and do it.