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Invisible Illness Week

Posted Sep 12 2011 7:08pm
Happy Invisible Illness Week! This year it's from September 12-18. Congratulations to all of you who have survived yet another year without strangling a doctor or going insane from too much unsolicited "advice on how to get better" from your friends.

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Dysautonomia. (Which caused [or is just related to?] IC, Neurogenic Bladder, PCS, Endometriosis, UC, and Pernicious Anemia.)
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: About half a year before I was diagnosed.
4. The biggest adjustment I’ve had to make is: Everything. Literally NOTHING is the same in my life except the basics, like I can still breathe. And I'm still hilarious, obviously.
5. Most people assume: That when I say "I don't feel well" or "I'm sick," that I'm talking about something like a cold or allergies. Ugh or swine flu.
6. The hardest part about mornings are: The mornings are actually the worst for me. My heart rate elevates A LOT while I'm asleep, no matter how many beta blockers I take before bed. So whenever I wake up, my sheets are soaked with sweat, I'm burning up, sometimes my limbs are numb, and I hurt. It just sucks to wake up from sleep. Because when you sleep, you don't really hurt. So when you wake up it's like, "GOOD MORNING BEAUTIFUL WOR...aw crap."
7. My favorite medical TV show is: I don't watch many of those. Sometimes I watch Mystery Diagnosis because it's nice to know that other people have relatively unknown disorders that suck, too.
8. A gadget I couldn’t live without is: Is my pill case a gadget? It keeps me sane. I'm always so disappointed when the week is over and I have to refill it.
9. The hardest part about nights are: Getting to sleep with my heart bouncing around and the pain all over. AND MY CAT WON'T SHUT UP.
10. Each day I take __ pills & vitamins: 18ish? I really don't feel like counting right now. And a monthly shot.
11. Regarding alternative treatments I: would try it if it worked. If acupuncture was covered by BC/BS, I would try it for the IC. (It actually probably will be covered by insurance in the future. That's how successful they're finding it to be.)
12. If I had to choose between an invisible illness or visible I would choose: What kind of question is that? I'm sure visible illnesses suck, too. It's not like we're rivals or something. Auburn vs Bama = invisible illnesses vs visible illnesses.
13. Regarding working and career: I'm extremely worried about if I'll be able to hold down a job. I'm worried if I'll be able to finish school. Unless something changes drastically in the next few semesters, I don't understand how I'm going to student teach. I'm struggling to even just go to school full time. School is hard, y'all! Who knew?
14. People would be surprised to know: that when you say things like, "I'm so bummed! I have to take ONE PILL A DAY FOR A WHOLE MONTH until this goes away!!! Do you even know how annoying that is?!" I want nothing more than to punch you in the face and go get drunk. Neither of which I can do. Because normally you're my friends and I love you. Just...quit being a baby. Step in my shoes for AN HOUR. It's okay to have problems. Just don't pretend like your pink eye or whatever is anything near what I go through. I'm so tired of people thinking Dysautonomia is the same as, like, a paper cut.
15. The hardest thing to accept about my new reality has been: the realization that I'll probably never be able to have kids. I was ADORABLE as a child. Told jokes like a champ. To deprive the world of tons of little Rachels running around? Tragic.
16. Something I never thought I could do with my illness that I did was: fall in love.
17. The commercials about my illness: Ha! Those don't exist.
18. Something I really miss doing since I was diagnosed is: Being stupid. Like, I miss running around making stupid videos and being energetic. I miss not hurting.
19. It was really hard to have to give up: All the things normal 18-21 year olds are doing.
20. A new hobby I have taken up since my diagnosis is: I don't have one? I tried to knit for awhile but it hurt my hands.
21. If I could have one day of feeling normal again I would: I wouldn't do A THING. I would just sit still and enjoy not hurting.
22. My illness has taught me: To trust yourself. If a doctor tells you that you're just dehydrated but you KNOW that that's not the real issue, don't give in.
23. Want to know a secret? One thing people say that gets under my skin is: When people get mad at me for talking about this. Really? You talk about football 24/7. Why? Because it's what consumes your life. WELL GUESS WHAT? THIS is what consumes my life. And it's a little more substantial than football, if I do say so myself. So get over it. We all have our issues. I can't help that yours is being an idiot. (Disclaimer: this is aimed at a few specific people. It's okay to love football.)
24. But I love it when people: ask me questions about it and genuinely want to know.
25. My favorite motto, scripture, quote that gets me through tough times is: I have a playlist of songs to get me through the worst time. The title of this blog (A Brand New Set of Wings) is a Joe Purdy song from that playlist.
26. When someone is diagnosed I’d like to tell them: I'm having a rough year with it, so I'm probably not the most positive source of advice about this right now. I'd tell them...I hope you've had better luck than me! But seriously, I have no idea. I'd give them a list of doctors.
27. Something that has surprised me about living with an illness is: The extent to which most of my friends don't care. One time I was trying to explain to one friend why I couldn't go out to dinner and he said, "You're just complaining to complain." Really? Really? Well, you're just being a jerk to be a jerk.
Another thing that surprised me is just how many people are so much worse off than me. It's unbelievable that so many people feel worse than I do and have such worse things than I do. And have less chance of a good life than I do. It baffles me. And some of them are even better at handling life than I am! So proud of all of them, even if I've never met them.
28. The nicest thing someone did for me when I wasn’t feeling well was: That time when I was in the hospital and Evelyn, Amanda, Laura, and Lauren came to visit me and talked about sneaking me out to ride the tram. And we made creatures out of the latex gloves. I think it was Evelyn who made Lt. Dan from Forrest Gump. That really meant a lot. Not the Lt. Dan part. But just...coming to spend time with me. And not caring that I was unshowered and gross.
29. I’m involved with Invisible Illness Week because: Awareness? Lawwwd, I don't know. Seems like a good thing to do.
30. The fact that you read this list makes me feel: Grateful. You should let me know if you read this because it'd mean a lot. Big ups to you.
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