29 Things About My Invisible Illness You May Not Know

I just read a blog post by a scrapping friend of mine from last week about it being Invisible Illness Week. (See http://invisibleillnessweek.com) I had no idea there was such a thing, but it sure sounds like a good idea to me. I found the questions that my friend and over 70 bloggers answered last week to bring awareness to invisible illnesses, and I wanted to share with myself and you how I feel about my illness at this point in time.

1. The illness I live with is: Irritable Bowel Syndrome (IBS)

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: Probably almost my whole life... at least since my teen years. However, I believe that what really set it off was a stomach bug I had in March of 2007.

4. The biggest adjustment I’ve had to make is: not being spontaneous anymore. I have to think through what I eat, where I'm going, where the bathroom is, etc.

5. Most people assume: that my symptoms are caused by something in particular I ate. I mean, what I eat does have a lot to do with it, but I can eat a McDonald's hamburger today and be fine. But I eat the same hamburger tomorrow and have an IBS attack. For instance, my husband loves to grill out on Sunday evenings, and many times, it is steak he grills. For several weeks, every time I would eat a steak, I'd be sick. But then suddenly, everything was fine. I have eaten steak a couple of times in the last three weeks and had no problems whatsoever. There is really no rhyme or reason to it.

6. The hardest part about mornings are: I actually have fine mornings, unlike many people who suffer from IBS. The time of day when I most likely suffer an "attack" is 5-6pm, which really cuts into the cooking supper time, as my husband can attest.

7. My favorite medical TV show is: I don't watch them.

8. A gadget I couldn’t live without is: my throw that the neighbor's daughter made for me. I use it to cover up with when I have an attack because I have chills.

9. The hardest part about nights are: avoiding heartburn (which I never had until I got IBS).

10. Each day I take 5 pills & vitamins. Only one is for symptoms... an antacid to avoid the heartburn I mentioned above. I was given a antispasmodic to take when I thought I was going to eat something that would set off an attack, but I haven't taken those in months. I also have anti-anxiety medication to take as needed, because as I told my doctor, worrying about where the closest bathroom is at all times causes anxiety!

11. Regarding alternative treatments I: am open to most and may have tried a few... such as peppermint.

12. If I had to choose between an invisible illness or visible I would choose: Definitely invisible... though there are times that I wish I could wear a banner so that people understand why I'm acting the way I am. I read once about a woman who has IBS who had made up cards to explain to people why she needs to cut in line ahead of them in a public restroom. I've never had to resort to that, thank goodness, but I can sure understand it!

13. Regarding working and career: I have been out of work for 2 1/2 years. One of the reasons is my IBS - in the beginning, I could not have held down a job. Now, my symptoms are better, and I could go back to work if I so chose. Right now though, being a homemaker is fine with me.

14. People would be surprised to know: that I am constantly aware of what I am eating and how it will affect me and where the closest bathroom is. (Oh, and that I never burped out loud until I was diagnosed with IBS!)

15. The hardest thing to accept about my new reality has been: Having to take so much down time. I wasn't used to that, but now I may have to lie down for awhile every day, waiting for an attack to pass.

16. Something I really miss doing since I was diagnosed is: eating at Wendy's and Red Lobster!

17. Something I never thought I could do with my illness that I did was: I have managed to eat Wendy's a couple of times recently.

18. The commercials about my illness: I haven't actually seen any commercials about IBS. There are no specific medications for it. You just have to manage it yourself.

19. It was really hard to have to give up: milkshakes. I sneak ice cream sometimes, but milkshakes are a no-no. And my mom makes the best!

20. A new hobby I have taken up since my diagnosis is: I haven't taken up any new hobbies... I am fortunate that I am able to scrapbook and read like I always have.

21. If I could have one day of feeling normal again I would: eat lunch at Wendy's and dinner at Red Lobster. AND go hiking to a waterfall!

22. My illness has taught me: that resting and down time is OK. I didn't believe that before... I always had to be on the go.

23. Want to know a secret? One thing people say that gets under my skin is: "Well, it must have been that (insert whatever food here) that you ate. You may not be able to eat that anymore."

24. But I love it when people: don't look at me funny because I just spent 20 minutes in the bathroom.

25. My favorite motto, scripture, quote that gets me through tough times is: "This, too, shall pass."

26. When someone is diagnosed I’d like to tell them: It is not the end of your world. It is just a bump in the road that will smooth out as time goes by. And you will be stronger for having been through it.

27. Something that has surprised me about living with an illness is: how many people do. I have met so many people with IBS since I was diagnosed... I had no idea. Including members of my own family!

28. The nicest thing someone did for me when I wasn’t feeling well was: cook supper, clean house, put a wet washcloth on my forehead... and all of this has been done by my wonderful, understanding husband.

29. The fact that you read this list makes me feel: vulnerable... because I have just shared way more with you about my digestive habits than you ever wanted to know. But also glad if I bring more understanding about IBS to someone.