It’s that time of year! Time for the Invisible Illness Awareness Week “30 Things meme”. You can learn more about the meme, the awareness week (a national movement started by Lisa Copen) here. Sign up for Lisa’s emails (packed with valuable links), and receive the download for a FREE eBook covering many aspects of life with chronic illness (including a chapter by yours truly). This year’s IIAW is September 12-18!
If you would like to join in, please post a link in the comments of this blog post at Understanding Invisible Illness to your meme! Sharing these responses is one of the most exciting and powerful aspects of this movement. Enjoy!
1. The illness I live with is: Lupus and Fibromyalgia
2. I was diagnosed with it in the year: Lupus 2010, Fibromyalgia 2000
3. But I had symptoms since: age 21 (more than 20 years)
4. The biggest adjustment I’ve had to make is: making sure I get plenty of rest. If I don’t rest, the symptoms are much worse.
5. Most people assume: that it would be easier to send Ben to school.
6. The hardest part about mornings are: getting out of bed. The pain is worse in the mornings, and I don’t sleep well at night, so most mornings begin late.
7. My favorite medical TV show is: for the most part, I can’t stand medical shows, but I do enjoy House now and then.
8. A gadget I couldn’t live without is: my heating pad.
9. The hardest part about nights are: getting to sleep at a decent hour. It’s not unusual for me to still be awake at 4am.
10. Each day I take __ pills and vitamins: 10 total.
11. Regarding alternative treatments I: have tried recently been trying eating vegan. Beginning today, I am changing things up a bit. I will be eliminating sugar, beef, pork, dairy, and wheat, while adding back in eggs, chicken, and fish. I also take several supplements including magnesium with malic acid, bee pollen, and flax seed oil.
12. If I had to choose between an invisible illness or visible I would choose: I would always choose invisible. On days that I do feel well, I wouldn’t want to look sick. I also like the choice of whether or not to share about my illnesses with others.
13. Regarding working and career: I am an RN and until about 1 1/2 years ago, I worked full-time and homeschooled. I’m just not able to keep up that pace any more, so I quit working. At this point in my illness, it would be difficult for me to work as an RN. But I hope that changes soon.
14. People would be surprised to know: I’m not sure I have any surprises left. I’m pretty much an open book. Maybe that my house is a total wreck all the time!
15. The hardest thing to accept about my new reality has been: that I can’t do it all, I must set limits, make room in my schedule for rest, and say “no” more often than I would like.
16. Something I never thought I could do with my illness that I did was: I haven’t discovered anything here yet.
17. The commercials about my illness: Fibromyalgia seems to be the new age illness of favor. I see commercials often for medications used to treat it. I suppose it has helped make Fibro an accepted diagnosis, rather than just a catch-all for when the doctor has no idea what’s wrong. I’m not seeing much for Lupus though.
18. Something I really miss doing since I was diagnosed is: exercising. I’ve put on a lot of weight, and while I have lost about 35lbs, I would like to have the benefit of exercise to help take more off, more quickly.
19. It was really hard to have to give up: cheese.
20. A new hobby I have taken up since my diagnosis is: I don’t really have any new hobbies. I seem to stay pretty busy.
21. If I could have one day of feeling normal again I would: praise God!
22. My illness has taught me: to rely on God, ask for help more often, and s-l-o-w down.
23. Want to know a secret? I hate talking about how I feel. While I greatly appreciate friends asking me how I am, and I know they really want to know, I hate talking about it.
24. But I love it when people: tell me they are praying for me.
25. My favorite motto, scripture, quote that gets me through tough times is: there are many scriptures that bless me. One of my favorites is: John 16:33–These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.
26. When someone is diagnosed I’d like to tell them: it’s not the end of the world, not even your world. You may need to adjust, slow down, make some changes, but life will go on, and it will still be productive, useful, and joyful.
27. Something that has surprised me about living with an illness is: that people can be so compassionate and are willing to help. You just have to let them know what you need.
28. The nicest thing someone did for me when I wasn’t feeling well was: a friend recently wrote to me to tell me she was praying for me every day that week and asked how she could specifically pray. I’ve also had friends come and take my son for the day so I could rest. Both things are greatly appreciated and touch my heart.
29. I’m involved with Invisible Illness Week because: it gives me opportunity to share with others who might not understand, or who might need to be encouraged.
30. The fact that you read this list makes me feel: appreciated, hopeful.