Invisible Chronic Illness Awareness Week Meme

Headache1It’s just about the end of National Invisible Chronic Illness Awareness Week (September 14-20) and since I have one, I thought I should participate. I found this kind of interesting meme on a migraine site and it seemed an appropriate and kind of fun way of posting about my headache without getting all depressed about it (especially since this past week has been particularly hard in that respect).

1. My illness list includes but is not limited to: a headache that I can best describe as being sort of like a migraine but not quite that I’ve had every minute of every day for over ten years now (ten years and twenty-four days, actually).

2. I was diagnosed with: New Daily Persistent Headache

3. But I had symptoms since: It started pretty definitely on August 26, 1999, although now I think that I might have had auras as a kid and never had it diagnosed because I just thought everybody saw things like that.

4. The biggest adjustment I’ve had to make is: Learning to slow down and deal not being able to do everything I want to sometimes

5. Most people assume: “It’s just a headache.” I’ve come to hate the word “just” with a burning passion.

6. The hardest part about mornings are: Every morning there’s a moment when I first wake up when I realize that the pain is still there and even after ten years it’s still incredibly disappointing every time.

7. My favorite medical TV show is: I don’t really like medical TV shows. Not for any particular reason, I just tend to find them boring. The everyday workings of hospitals and the love lives of the people who work there just aren’t that interesting to me. I think there was a medical show with Dick Van Dyke at one point (Diagnosis Murder maybe?) that was a mystery show and I remember enjoying that, but it’s not on anymore as far as I know.

8. A gadget I couldn’t live without is: I don’t know. I’m not actually big on gadgets. Maybe my computer, if that counts as a “gadget”?

9. The hardest part about nights are: Falling asleep in the first place. I’m terrible at that. I can lay awake thinking about things forever. I’m totally a night owl!

10. Each day I take: two medications at bedtime and sometimes extras if the pain is bad.

11. Regarding alternative treatments: I haven’t had a ton of luck with alternative treatments, but I have found things that help a little (and, like most headache sufferers, I’m willing to try most things). Yoga (structured around and to help the headache) can help a little, but only if it’s already pretty good, the smell of peppermint takes the edge off the pain when it’s really bad and often makes it bearable until the medicine can kick in, head massages can reduce the frequency of the bad spikes, but are expensive. Nothing else has made a big difference for me.

12. If I had to choose between an invisible illness or visible I would choose: Well, I’d rather neither. That’s hard to say and I’m not sure I actually can choose here. I think they both suck equally for different reasons.

13. Regarding working and career: My headache has definitely changed how I went about following what I want for my career, but I’m still hoping to get there eventually. It also made working really, really challenging, both while being at work some days and in trying to justify sick days when I didn’t seem sick to the managers. And fainting in front of customers is generally a bad idea, but not something I could avoid at times. So it’s absolutely affected my work and jobs. It affected where and how I worked too, but that’s an even bigger mess.

14. People would be surprised to know: I can see some uses for some of the effects of my headache and I’m thinking about writing a story with that in mind.

15. The hardest thing to accept about my new reality is: having to realize that I have to slow down and pace myself all the time, that I have to think about everything – what I put on in the morning, what I choose to eat, where I sit in a room, etc. because it all affects what happens to my headache and the headache affects it.

16. Something I never thought I could do with my illness that I did was: Work up to a leadership position in my previous job. Given how hard it was just to work full time and how much I frustrated the managers by having to go home “sick” with a headache sometimes (and being sick longer than anyone else when I did get a cold because my body is also always fighting off a headache), I never thought they’d trust me as a lead, but they did. And, even better, I was good at it.

17. The commercials about my illness: Technically, there aren’t any, but the commercials about headaches and migraine are dreadful and I hate them a lot. I’m sure some of them will be featured on An Ad a Day at some point.

18. Something I really miss doing since I was diagnosed is: Crying without feeling bad the whole time that I was making my headache worse by crying (or by trying not to – it’s pretty much a lose-lose).

19. It was really hard to have to give up: Reading late into the night. I loved being able to do that. Loved, loved, loved it. Not that I wanted to do it every night, I’d outgrown the need to do that, but I loved that I could do it sometimes. It was a wonderful luxury that I’m not sure I ever really appreciated fully. Now I really can’t do that because if I do, I’m going to be in a ton of extra pain the next day that I didn’t need to be in, so I really don’t do it. I read a little late sometimes, but never like I used to.

20. A new hobby I have taken up since my diagnosis is: I’m not sure that I have a new hobby, just more nuanced relationships with old ones. I game in new and different ways than I used to. I’ve started drawing and sewing more seriously, but both were things I did before. I’m sure there must be one (it’s been ten years), I just don’t know of it in particular at this moment. Sorry.

21. If I could have one day of feeling normal again I would: Throw a party (and probably spend the day second guessing it).

22. My illness has taught me: That I’m a lot stronger than I thought I was and that It’s important to slow down and pay attention to yourself. And that the world is full of weird smells.

23. One thing people say that gets under my skin is: “I couldn’t do that.” Yes, you could. When you don’t have a choice, you can do it. Trust me. And saying you couldn’t doesn’t make me feel better, it just makes me wish you thought more of yourself.

24. But I love it when people: manage to respond to my needs or help me without making me feel like an invalid or a freak or a china doll that will break as soon as you look at it.

25. My favorite motto, scripture, quote that gets me through tough times is: “Tomorrow is another day”

26. When someone is diagnosed I like to tell them: Remember that it’s not just in your head, and it’s going to be ok.

27. Something that has surprised me about living with an illness is: how much it affects not only every element of my life, but every element of my husband’s life as well.

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband brought home flowers for me one day when he knew I was hurting a lot. They were just grocery store flowers he’d grabbed when he was there getting other things, but they meant a lot and made me feel so loved and happy. They weren’t the most important thing or the thing that made the most impact on my life, but they were a simple thing and it’s those simple things that make getting through day-to-day bearable.

29. I’m involved with Invisible Illness Week because: Being invisible sucks. People think that just because they can’t see something it must not exist (with the exception of God, who for some reason gets to not have to follow this rule even in people who otherwise live by it). But you can’t always see things, even when they are real and so those of us who can “see” them should talk about them to give them more credibility. Headaches aren’t “in our heads” or minor or “a women’s problem” or anything else. An enormous percentage of the population suffers from them, so it’s incredibly stupid that they get so little respect and have so little research done on them. They matter and those of us who suffer from them, whether we talk about it or suffer in silence, matter too.

30. The fact that you read this list makes me feel: hopeful and happy. Thank you.

Katie Zenke, Headache Sufferer

Meme: Questions from Trudy White

It’s quiz time! Trudy White posed five questions over at Seven Impossible Things Before Breakfast and there have been some awesome answers so far. I love the questions, so I’m going to play too!

1. How would someone find you in a crowd?

With difficulty. I’m tiny (5 foot nothing) and tend to disappear among all the tall people. That said, you could always look for the hole among the heads, I’m probably there! Or you could listen for me. I’m often talking animatedly about something. But in a crowd that’s probably less reliable than one would like.

2. If your house had a secret room, what would be in there?

Books! And more books! And maybe a place to sit and some light. And a bowl of peppermint candies. And the air pressure and temperature would be regulated. And there would be pillows perfectly propped up so when I was sitting I could rest my head and neck comfortably and still be able to read. But mostly there’d be books.

3. Where do you like to walk from your house?

Nowhere. Not that I don’t like to walk, I do. I just prefer to walk with no destination in mind. I like going on walks and just enjoying the walk itself. If I need to get somewhere, I usually just want to be there already unless it’s really really nice out.

4. How will you change as you grow up?

Um… I have no idea? I think not knowing is part of the fun of growing up. Hopefully I’ll get more organized, but I somehow doubt it. Ideally my headache will stop.

5. What sort of animal would you like to be?

Something little and cute. Maybe a puppy or a tiny lapdog who isn’t yappy, just cute and fluffy. I don’t know. It would be fun to be able to fly too, but I don’t think I’d make a very good bird.

Meme: Harry Potter Mania!

Ravenclaw CrestThis meme was posted over at Big A little a and Kelly invited anyone who was interested to participate. Since it’s a rather amusing meme, I thought I’d steal it and join in!

1. Butterbeer or pumpkin juice?

Well, I’m not a big fan of anything I can think of butterbeer tasting like, but I am a juice fiend, so I’d have to go with pumpkin juice (even though I’ve never tried it).

2. What house would you most likely (or want to) be in in Hogwarts?

I’d almost certainly be in Ravenclaw. I’m a total nerd, not particularly ambitious and not notably brave. Everything about me screams Ravenclaw. Which is cool. I like Ravenclaw.

3. If you were an animagus, what animal would you turn into?

Hmm… tough one. Probably something small. Maybe a songbird of some type, but I don’t know nearly enough about birds to have any idea what type. I’m talkative and like the sensation of weightlessness and flying (heights definitely don’t scare me either), so songbird seems a good choice.

4. What character to you empathize with or resemble best?

Of the main characters, definitely Herminone – again with the nerd thing. I have a soft spot for Luna too, thoughW. She has such interesting ideas, but no one ever listens to her. I totally understand that feeling sometimes.

5. What position do you play at Quidditch?

Well, assuming I’m allowed to play (I have very little athletic ability), I’d go with keeper. I’m not fast or agile, my throwing and catching suck, and I’m not terribly strong, so that pretty much rules out beater or chaser. My eyesight sucks, so I’d be a horrible seeker. I’ve got a very good sense of how to tend goal, though, so I think if I had to play I’d be keeper. I wouldn’t be very good, but I’d be better at it than I would doing anything else on the field.

6. Which teacher is your favorite?

I like Professor McGonnegall. She’s tough but fair and she’s got a flair for the dramatic at times. Besides, she’s interesting. I’d love to hear her story someday.

7. Any Harry Potter 7 predictions?

I’m running an HP book club at work and the kids usually have way better ideas than I could ever come up with, so my predictions change frequently. Currently I think that Harry’s likely a horcrux, which explains the prophecy and complicates things nicely from a storytelling perspective. It just makes so much sense. I totally didn’t come up with that, by the way. I also think Hermione isn’t going to die (she’s the token girl, so she’s safe). Beyond that, I currently have real theories I’m backing. There are lots of interesting ones I’ve thought about, though (the magical world ending and Mr. Weasley running Hogwarts as a school for wizards learning to join the muggle world was one of my favorites for sheer amusement factor and cleverness, but I don’t think it’s likely at all).

That’s it! If you want to join this meme, please do! I’d love to see what more people think!

Meme: Interview Me!

Kalinara over at Pretty, Fuzzy Paradise has an amusing meme going and I decided to participate. I let her ask me any five questions she wanted, and below are the questions and answers! If you want to participate, the rules for how to do so are after my interview!

1. If you were doing an comic book related RPG, who would you most want to play?

Hmm… I’d really want to play Batgirl (Barbara Gordon’s version – much as I like Cass, I’m not wild about playing characters who never talk) because I think it would be fun to play a character who doesn’t actually have any superpowers. If I was to play someone with powers, I’d probably go with Black Canary just because she’s not as all-powerful as Supergirl or Wonder Woman and that gives me more to work with.

2. If you were to design your dream role-playing game scenario, what would you like it to have?

That’s a hard one. I almost don’t know how to answer. I like role playing situations with lots to work with, though, so parties are good – lots of people and lots going on. It depends a lot on the game and the players involved.

3. What’s the most ridiculous storyline element you can think of in Dungeons and Dragons?

My first instinct with this one was to say “orc and pie”, but it’s way too cliche! I think anything with an ooze is pretty ridiculous. D&D lends itself so well to the ridiculous and stupid in storytelling – cities in volcanoes that then erupt (thanks again, Michael, for not letting that happen!), people who refuse to see the obvious until it literally jumps out and eats them (no, our town isn’t right outside a dragon’s cave, why would you suggest such a thing?), etc. It’s almost easier to come up with ridiculous stories in the D&D worlds than logical ones. Really, why would anyone live near a goblin village? They wouldn’t. But if they didn’t, there’d be nothing for low-level adventurers to do, so someone must live there!

4. Who’s your favorite character that you’ve played in an RPG?

Verana Telemaite, an elven rogue that I played in the first half of the recently finished Shackled City campaign that my husband, Michael ran. Verana was great. Part of the reason I enjoyed her so much was that she was not only a great character in her own right, but one of my very best friends was playing her twin brother, Maeglin, and having him to play off of was a blast. I’d never had an in-game familial relationship like that before and it was awesome. For more information about the game and about Verana and Maeglin than you could ever want, check out the very awesome wiki that we’ve made about the game.

5. Bottled or Tap Water.

Tap. I’m Midwestern and practical.

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Ok, so if you want to join the meme, here’s how!

1. Leave a comment asking to be interviewed.
2. I will respond by asking you five questions. They won’t necessarily (in fact, they won’t likely) be the same questions that I was asked, or that I ask anyone else.
3. Then update your blog with the answers to the questions.
4. At the end of your interview, include this explanation (or something similar) and offer to interview someone else.
5. When other people comment asking to be interviewed, ask them five questions!