I’m sure many of you know about Invisible Illness Awareness Week, September 10th – 16th. Well, this year the people running that show have put out an INVISIBLE ILLNESS MEME.
I am a huge fan of memes, as you may have noticed from previous posts like this one, this one, this one, and many others. And I have some invisible illness memes in the works already, but in the mean time I am very excited to pass on this “30 Things Meme” and I hope you’ll do it too! If you do fill it out, PLEASE leave me a link in the comments so I can read yours!
For more information on Invisible Illness Week and the 30 Things Meme, click here.
1. The illness I live with is: Endometriosis
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2005-ish
4. The biggest adjustment I’ve had to make is: Basically just loosening up on life – understanding that just because I make plans doesn’t mean my body’s going to be on board. The hardest part of that was accepting that it applies to everything – school, work, everything.
5. Most people assume: I’m a perfectly healthy, albeit silly girl.
6. The hardest part about mornings are: Getting out of bed. My body always seems to need more sleep than it gets.
7. My favorite medical TV show is: Oh no, I can’t watch that stuff. It makes my stomach turn.
8. A gadget I couldn’t live without is: My laptop. It seems to be attached to me, I never go anywhere without it.
9. The hardest part about nights are: Getting in quality time with my husband. Sometimes dinner and bedtime is the only time we get together, and I’m usually pretty worn out by the days events.
10. Each day I take 2-4 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Not 100% sure what this is referring to, but I’ve had more surgeries than someone my age should have had, and I’m worried there’s more in my future unless I get that “miracle” cure through pregnancy. To be honest, I have begun some more in-depth research in to pregnancy as a treatment for Endo.
12. If I had to choose between an invisible illness or visible I would choose: I suppose I’d go for invisible. As hard as it can be sometimes, in the end I’m still a vain little girl.
13. Regarding working and career: I’ve always wanted to be a writer – lucky, because I can do that from my bed. Right now I work for a production company and I enjoy it a lot. I am pretty much the only girl there, though, and I often think that if I worked with more women I’d have more understanding, but overall work is gracious and works with me and my illness.
14. People would be surprised to know: Haha I’m sure I have a few readers out there who were surprised by the “researching pregnancy as a cure” thing. Sorry Daddy! Don’t worry, no plans yet, just research!
15. The hardest thing to accept about my new reality has been: Dealing with emotions in conjunction with hormone treatment. I know many of my feelings are overreactions brought on by heavy doses of hormones (and the pain meds don’t help either!) but that doesn’t make those feelings any less real. Still, it feels like they don’t really count, and that upsets me more. Dealing with all emotions, good and bad, has been a rocky road.
16. Something I never thought I could do with my illness that I did was: Get SCUBA certified! In December! Uphill both ways! You can read about that adventure here.
17. The commercials about my illness: There are none. Literally zero. Despite the fact that Endo is a fairly common disease among women, most people have never heard of it.
18. Something I really miss doing since I was diagnosed is: Colorguard…. you can read more about that here.
19. It was really hard to have to give up: I don’t feel I’ve totally given anything up….just downed the dose of a lot of things like colorguard and junky food and stuff like that. I’m stubborn that way.
20. A new hobby I have taken up since my diagnosis is: Sewing. I love doing stuff with my hands that doesn’t require a lot of thinking. And of course – BLOGGING! I’d never have started up a blog if it wasn’t for Endo.
21. If I could have one day of feeling normal again I would: Take a second Honeymoon.
22. My illness has taught me: More than I could possibly write on this blog even if I wrote every day for the rest of my life.
23. Want to know a secret? One thing people say that gets under my skin is: “Sure you can!” Usually in response to “I don’t know if I’ll be able to ______.” My family and friends are used to me being strong and well, so when I express that I’m really too sick for some activity, they try to be encouraging by saying they know I can do it, I just gotta try, they believe in me, etc. etc. They mean well, but sometimes I just need someone to say “That’s okay. What would you like to do instead?”
24. But I love it when people: Ask how I’m doing. I know it probably annoys some people, but I kind of love it when, after finding out about my illness, people ask how I’m feeling today or if I had a good weekend. I really appreciate that they thought to ask and check in on me.
25. My favorite motto, scripture, quote that gets me through tough times is: “You were given this life because you are strong enough to lead it.” I see this all over the invisible illness Twitter community, and it always helps me hold my chin up and keep going. (don’t forget to scroll down and follow us on twitter! I want to hear more little quotes like this.)
26. When someone is diagnosed I’d like to tell them: Okay, calm down. Incurable is a big, scary thought. Before you tackle the idea of how much will change, start by deciding what won’t. You’re still you, and you’ll always be you. Think of the friends and family you know will stick it out with you. Think of the little things that always make you happy, and will continue to be a comfort, like your cat, tea, a favorite book….. hold on to yourself. It’s going to be alright.
27. Something that has surprised me about living with an illness is: How normal it is! I mean, obviously it’s new to me, but I meet more and more people every day who are living the same way. I’m in good company.
28. The nicest thing someone did for me when I wasn’t feeling well was: My then-fiancée now-husband wanted to take me out on a date, but I didn’t feel up to it. He thought about it and came up with a “not up to dating date” – mini pizzas from Pizza Hut, and a mani-pedi. Still unsure, he persisted and I said okay. He carried me into the salon, handed me my pizza, and took a seat next to me. There was a lot of giggling, and it was one of my favorite dates ever.
29. I’m involved with Invisible Illness Week because: Oh boy, how did I get here again? I suppose it’s just because I’m sick, and I know I’m one of the lucky ones. I’m less sick than most. So I want to help.
30. The fact that you read this list makes me feel: REALLY EXCITED AND HAPPY, especially considering you probably found this site googling for David Bowie…..I’ve had weird stats lately. More on that later.