Okay – my attempt to put The Misses Pots answers to our questions we posted on featuring others living with Dysautonomia went a little quirky. Below is her answers and check out their great blog at The Misses Pots.
From Mik’s Mom: I really appreciate Teddy from The Misses Pots answering the questions we posted recently. So many good, insightful responses to the below questions that I have a hard time picking my favorite. However, if I did, it has to pick one, it would be her answer to #21 – if she could be “normal” for a day. Breaks my heart at the simple sweetness of wanting a LONG fun day with family. With the motivation and determination of the parents watching our kids live with this frustrating illness, there WILL be a cure one day!!
1. The illness I live with is:
Postural Orthostatic Tachycardia Syndrome (POTS)
2. I was diagnosed with it:
I was seventeen and diagnosed at the Mayo Clinic in Rochester.
3. I first noticed my symptoms when :
16, I got out of the bathtub one day and the next thing I know I’m on the ground, naked and shivering, trying not to pass out. I didn’t know I was lightheaded or sick. It just felt like my mind was floating a good two inches above my heavy head.
4. The biggest adjustment I’ve had to make is:
Hah, asking for help. I’m bullheaded to the extreme and there are some days I pretend to be strong and able to carry a heavy package or go down a flight of stairs. It doesn’t usually work, and my good friends have learned to intercept my stupidity.
5. Most people assume:
That I have a phobia of stairs and love high, flamboyant socks.
6. The hardest part about “not so good” days are:
Feeling like I am a burden on everyone. That I haven’t accomplished anything and the day was a waste.
7. Prior to me getting sick, I liked to:
Play tennis. I was the team captain and number one girl player in high school. Last time I tried to play I ended up in bed for two weeks it made me so ill.
8. A gadget I couldn’t live without is:
My laptop. I named him Giles from Buffy the Vampire Slayer. He’s incredibly useful for the days I can’t move and need something to do.
9. The hardest parts about the nights are:
Needing to go to bed at around 9:00. In college, no one goes to sleep until about 1 in the morning and I always feel like I’m missing something.
10. Each day I take approximately __ pills & vitamins.
11. Regarding alternative treatments I include:
Massage, weird muscle building exercises my dad comes up with, anti-embolism stockings, and a high sodium diet with lots of water.
12. If I had to choose between an invisible illness or visible illness I would choose:
It depends on the day. When I feel truly sick and someone walks by and tells me how great I look I tend to get a bit snarky and wish they could see what I was really dealing with. In some ways, I’m glad that it’s invisible. It means I can fly under the radar and can choose whom I tell. Then again, I’ve been lucky. When I’ve chosen to confide in people I trust, no one has ever doubted it’s a legitimate problem and I’m not just being lazy. Having an invisible illness is the best and worst thing about POTS.
13. Regarding school, I am homebound/homeschooled/attend at school and I find this:
Frustrating. Being too sick to have a full class schedule makes me feel upset and anxious that my brain is going to mush. I’m taking two classes from the community college now and it’s getting a little better.
14. People would be surprised to know:
I really hate cucumbers and watching on-screen kissing. It just grosses me out.
15. The hardest thing to accept about my new reality has been:
Feeling out of control. I had to really look at myself and realize that just because I couldn’t do something it didn’t mean I had failed.
16. Something I never thought I could do with my illness that I did was:
Blog. My sister and I have a blog called “The Misses POTS” (http://themissespots.wordpress.com/) I never anticipated the blessing that it turned out to be. Every single time someone liked, or commented on a post saying “I feel the same way” was this incredible validation that all our struggles and work meant something.
17. I feel that the general awareness about my condition is:
Getting increasingly better. I’ve met people like nurse practitioners at my school who were completely aware what my condition entailed and were incredibly sympathetic. That, plus there’s been this huge surge of bloggers in the past few years that are really optimistic and informative. We started out being one of the only blogs that tried to explain our condition as well as embrace our lives. Now, there’s a ton. My blog roll gets longer by the day.
18. Something I really miss doing since I became ill is:
Tennis. My whole family plays all the time and I really miss that competitive camaraderie.
19. It was really hard to have to give up:
Cheese and chocolate. POTS gave me a stomach problem that meant I have to be really careful with my diet.
20. A new hobby / goal I have taken up since my diagnosis is:
Cooking. It takes me a bit longer since I have to rest in the middle of recipes, but I love it. It gives this incredible sense of accomplishment.
21. If I could have one day of feeling normal again I would:
Get up early to go to church, and then make an elaborate brunch with my family and friends. A huge game of Ultimate Frisbee with my friends from university would follow that would last for hours. Later that afternoon I would read a really great book. That night I’d play a great game of RISK/Settlers of Catan/other take over the world game with my brothers, sisters, and cousins. Then, I’d go and get a midnight burrito at the base of my university.
22. My illness has taught me:
How little control we actually have over our lives. And how much of a blessing it is when we do get to succeed in a small aspect of it.
23. Want to know a secret? One thing people say that gets under my skin is:
“You look great! Are you a lot better now?”
24. But I love it when people:
A family friend said the other day “You have done a wonderful job of making yourself look well.” She gave me a hug and it was so flattering that she realized what an effort it is to look pretty.
25. My favorite motto, scripture, quote that gets me through tough times is:
“People are often unreasonable, irrational, and self centered. Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives. Be kind anyways.
If you are honest and sincere, people may deceive you. Be honest and sincere anyways.
What you spend years creating, others could destroy overnight. Create anyways.
If you find security and happiness, some may be jealous. Be happy anyways.
The good you do today will often be forgotten. Do good anyways.
Give the best you have, and it will never be enough. Give your best anyways.
In the final analysis, it is between you and God. It was never between you and them anyways.”
26. When someone is diagnosed I’d like to tell them:
The first year of being sick is not indicative how the rest of your life is going to be. I promise. The friends you will lose due to misunderstanding, you will gain back. All those things you have to give up, some of them you will eventually learn how to incorporate back into your life. Not all of them, but some. And you will realize things you love you would have never known about if you were as active as you once were. Make sure you realize we are not entitled to health or happiness. Every clear thought, every happy moment, every day you can do some exercises, is a blessing. Treat it as such. They’re small victories. And every time you are stuck in bed for days on end, or have to cancel a Skype date or meeting with a friend? They’re not failures. They’re not your fault. You are not to blame. Be open with the people around you. Shutting out the world will just make you hurt all the more inside.
27. Something that has surprised me about living with an illness is:
You can’t just “get through it” or pretend like your body and feelings don’t matter. You have to tell people how you feel and respect your body.
28. The nicest thing someone did for me when I wasn’t feeling well was:
There have been so many, it’s impossible to pick one. When I got seriously ill this fall and had to go home for surgery, I had this outpouring of love. The kids I taught Sunday School made home made cards, my best friends at school helped my mom pack up my dorm room for me and made a poster with little notes, jokes, Bible verses, and conversations all over it. I definitely cried when I saw it. I’ve never felt so loved by people outside my family before.
29. The person(s) who has been there for me and I could not do without is:
My mother. She can read my face like a book, and if I’m the least bit pale she rushes off and gets me something to drink like a Gatorade. Plus, she’s endlessly supportive and has sat in every waiting room with me. My family in general is incredible. My dad constantly has a new idea to add to my exercise regimen, my sister Pie never lets me drive when I feel a little sick, and my other brothers and sister are just really supportive and loving. I’m so grateful I’ve never had to try and prove I’m sick. They just believe me, without question. Also, I have a group of friends who text me every single day, and Skype me every week. I love them all so much.
30. The fact that you read this list makes me feel:
Hopeful that someone can remember we don’t stop being who we are just because we’re sick. We don’t stop being important or part of God’s plan.