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Invisible Illness Week at Rest Ministries
Hi all,
Every year Rest Ministries organizes an Invisible Illness week with lots of guest speakers and events. This year, you can find it on facebook, under Invisible Illness Week. Rest Ministries is a lovely Christian organization focusing on support for people with all kinds of illnesses. They also have a really encouraging message you can sign up to receive each morning. I've found it to be very helpful.
Each year they also give 30 questions to answer. I've done this for several years now & find my answers changing to be especially helpful as well.
Here are the "30 Things about my Invisible Illness You May Not Know":
If you'd like to participate with me, just copy the questions and delete my answers to put your own...
1. The illness I live with is: Interstitial Cystitis
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: July 10, 2003, though I had other bladder symptoms before that
4. The biggest adjustment I’ve had to make is: the loss of spontaneity in food, travel, weeknight & weekend activities
5. Most people assume: that I'm fine because they can't see my pain or struggles
6. The hardest part about mornings is: getting up to go to work after a sleepless night
7. My favorite medical TV show is: None, I find them irritating
8. A gadget I couldn’t live without is: my iPhone (this has nothing to do with IC, I just love it!)
9. The hardest part about nights are: when I'm in pain, going to the bathroom all night & knowing I have to get up to go to work the next day
10. Each day I take 6-7 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: wish they worked for me, but they don't usually.
12. If I had to choose between an invisible illness or visible I would choose: I don't know, there are plusses and minuses to either
13. Regarding working and career: I am grateful for the workplace accommodations my doctor wrote for my teaching job (extra restroom breaks, no yard duty, end of the day preparation time, a classroom near a restroom)
14. People would be surprised to know: I used to be thin and adventurous
15. The hardest thing to accept about my new reality has been: feeling unreliable because I have to change plans so often
16. Something I never thought I could do with my illness that I did was: travel, I still travel and value it even more than before
17. The commercials about my illness: annoy me, especially when they're cutesy ads about bladder protection. Especially hated the one with Whoopie Goldberg, making fun of leaks. Not funny to me at all.
18. Something I really miss doing since I was diagnosed is: eating whatever I'm offered & being able to enjoy & compliment foods at potlucks--especially foods guests are sharing from their cultures.
19. It was really hard to have to give up: Coffee!
20. A new hobby I have taken up since my diagnosis is: beaded jewelry making
21. If I could have one day of feeling normal again I would: go hiking with a group of friends & enjoy a picnic with them
22. My illness has taught me: to say thank you. I've been grateful to have had so much love & support in my life!
23. Want to know a secret? One thing people say that gets under my skin is: "I have so much sick leave because I think it's important to come to work every day." Uh, I think it's important too, but sometimes I just am too sick to go to work.
24. But I love it when people: let me pick the restaurant we can go to, so that I'll actually be able to eat!
25. My favorite motto, scripture, quote that gets me through tough times is: "One day at a time"
26. When someone is diagnosed I’d like to tell them: the hardest time is in the beginning, getting diagnosed and learning the diet. After that, it gets easier!
27. Something that has surprised me about living with an illness is: how much I appreciate "ordinary" days now!
28. The nicest thing someone did for me when I wasn’t feeling well was: when a taxi driver in Spain drove me across town to go to the one pharmacy open on Sundays, turned off the meter & told me he would wait for me to come out. I told him it was ok, the line was long, & he didn't have to wait. He smiled and said, "I want to help and I want you to have a good memory about Spanish people". Same week, I was in the emergency room in Spain, and the doctor tore up my bill at the end of the visit, saying that he was sorry I was sick so far from home & he wished he could help me more (my pain medicine was not available in Spain & I was having the flare-from-hell after having a UTI while on vacation.) I keep a gratitude journal and biggest thing I've learned from IC, is that there are many many kind people in the world who are happy to help others!
29. I’m involved with Invisible Illness Week because: we understand each other better than people with "perfect" health do
30. The fact that you read this list makes me feel: better understood & can't wait to read what others write
Every year Rest Ministries organizes an Invisible Illness week with lots of guest speakers and events. This year, you can find it on facebook, under Invisible Illness Week. Rest Ministries is a lovely Christian organization focusing on support for people with all kinds of illnesses. They also have a really encouraging message you can sign up to receive each morning. I've found it to be very helpful.
Each year they also give 30 questions to answer. I've done this for several years now & find my answers changing to be especially helpful as well.
Here are the "30 Things about my Invisible Illness You May Not Know":
If you'd like to participate with me, just copy the questions and delete my answers to put your own...
1. The illness I live with is: Interstitial Cystitis
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: July 10, 2003, though I had other bladder symptoms before that
4. The biggest adjustment I’ve had to make is: the loss of spontaneity in food, travel, weeknight & weekend activities
5. Most people assume: that I'm fine because they can't see my pain or struggles
6. The hardest part about mornings is: getting up to go to work after a sleepless night
7. My favorite medical TV show is: None, I find them irritating
8. A gadget I couldn’t live without is: my iPhone (this has nothing to do with IC, I just love it!)
9. The hardest part about nights are: when I'm in pain, going to the bathroom all night & knowing I have to get up to go to work the next day
10. Each day I take 6-7 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: wish they worked for me, but they don't usually.
12. If I had to choose between an invisible illness or visible I would choose: I don't know, there are plusses and minuses to either
13. Regarding working and career: I am grateful for the workplace accommodations my doctor wrote for my teaching job (extra restroom breaks, no yard duty, end of the day preparation time, a classroom near a restroom)
14. People would be surprised to know: I used to be thin and adventurous
15. The hardest thing to accept about my new reality has been: feeling unreliable because I have to change plans so often
16. Something I never thought I could do with my illness that I did was: travel, I still travel and value it even more than before
17. The commercials about my illness: annoy me, especially when they're cutesy ads about bladder protection. Especially hated the one with Whoopie Goldberg, making fun of leaks. Not funny to me at all.
18. Something I really miss doing since I was diagnosed is: eating whatever I'm offered & being able to enjoy & compliment foods at potlucks--especially foods guests are sharing from their cultures.
19. It was really hard to have to give up: Coffee!
20. A new hobby I have taken up since my diagnosis is: beaded jewelry making
21. If I could have one day of feeling normal again I would: go hiking with a group of friends & enjoy a picnic with them
22. My illness has taught me: to say thank you. I've been grateful to have had so much love & support in my life!
23. Want to know a secret? One thing people say that gets under my skin is: "I have so much sick leave because I think it's important to come to work every day." Uh, I think it's important too, but sometimes I just am too sick to go to work.
24. But I love it when people: let me pick the restaurant we can go to, so that I'll actually be able to eat!
25. My favorite motto, scripture, quote that gets me through tough times is: "One day at a time"
26. When someone is diagnosed I’d like to tell them: the hardest time is in the beginning, getting diagnosed and learning the diet. After that, it gets easier!
27. Something that has surprised me about living with an illness is: how much I appreciate "ordinary" days now!
28. The nicest thing someone did for me when I wasn’t feeling well was: when a taxi driver in Spain drove me across town to go to the one pharmacy open on Sundays, turned off the meter & told me he would wait for me to come out. I told him it was ok, the line was long, & he didn't have to wait. He smiled and said, "I want to help and I want you to have a good memory about Spanish people". Same week, I was in the emergency room in Spain, and the doctor tore up my bill at the end of the visit, saying that he was sorry I was sick so far from home & he wished he could help me more (my pain medicine was not available in Spain & I was having the flare-from-hell after having a UTI while on vacation.) I keep a gratitude journal and biggest thing I've learned from IC, is that there are many many kind people in the world who are happy to help others!
29. I’m involved with Invisible Illness Week because: we understand each other better than people with "perfect" health do
30. The fact that you read this list makes me feel: better understood & can't wait to read what others write
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