28 August 2013

30 Things About My Invisible Illness You May Not Know

A round-robin meme as part of National Invisible Illness Awareness Week!

Warning - Deep thoughts, humor, and brutal honesty ahead.

1. The illness I live with is: Rheumatoid Arthritis

2. I was diagnosed with it in the year: 1964

3. But I had symptoms since: 1964

4. The biggest adjustment I’ve had to make is: That no matter how hard one fights this disease, one is in an almost constant state of loss - loss of joint function, loss of mobility, loss of overall health. The meds don't always work like you see on TV - in reality, no two patients are alike and it may take years to find an effective treatment, if at all. Surgery and medications can help you regain some of those losses, but overall the loss is greater than the gain.

5. Most people assume: I'm simply lazy.

6. The hardest part about mornings are: Getting to the bathroom on stiff joints "in time."

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is:  My electric wine bottle opener!

9. The hardest part about nights are: Getting comfortable enough to fall and stay asleep.

10. Each day I take _15_ pills & vitamins (and 3 injections a week).

11. Regarding alternative treatments I:  Am a Reiki master/teacher. I think it has helped me heal much of the mental, emotional, and spiritual scars RA inflicts. On the physical level, I think it has helped me do better on fewer medications.

12. If I had to choose between an invisible illness or visible I would choose: Visible. It's easier for people to understand. Sometimes I wonder if it would be better to have a limb missing.

13. Regarding working and career: I tried to have a career, but had to choose between full time work and raising my kids. We've also moved a lot due to my husband's career, which made it harder to build one of my own. Now I work from home as a contract writer. I gave up commuting to jobs years ago - it's too physically draining. If I can't do it from home, I turn the contract down.

14. People would be surprised to know: Having a chronic disease can be lonely. Once you become chronically ill you learn who your real friends are. Everyone is sympathetic at first, but eventually most get tired of you being sick all the time, and fall away. Another aspect that isn't talked about is the depression that comes with chronic illness, and the toll it takes on marriages. Autoimmune illness affects primarily women, and sometimes their husbands decide "I didn't sign up for this" and seek divorce. More often, the strain of having a wife that can't be fixed (when men are hard wired to "fix"), takes a huge toll.

15. The hardest thing to accept about my new reality has been: My reality is "old", but I'm continually amazed at how many people still don't "get it", or even want to try. They'd rather make wrong assumptions than learn anything.

16. Something I never thought I could do with my illness that I did was:  Ride a motorcycle.

17. The commercials about my illness:  DO NOT GET ME STARTED.

18. Something I really miss doing since I was diagnosed is: It sounds silly, but one of the few things I remember from before my diagnosis is being able to sit on my heels, and sit "Indian style" on the floor. I wish I could still do that.

19. It was really hard to have to give up: I don't remember what it's like not to have to deal with this illness, so I guess it was the idea that I would NEVER have anything close to a normal life.

20. A new hobby I have taken up since my diagnosis is: Motorcycling.

21. If I could have one day of feeling normal again I would: Put on a backpack and hike for miles and miles with my husband and feel like I'm holding him back.

22. My illness has taught me: Letting go of what I can't control. Worry and stress make it so much worse.

23. Want to know a secret? One thing people say that gets under my skin is: "Why do you take all those toxic medicines? You'd feel better if you'd just (insert 'exercise', 'get out more', or some bogus 'miracle' supplement here)."  Or, "What about that drug I heard about on TV? It shows people taking one pill and dancing all night."

24. But I love it when people: At least make an effort to understand.

25. My favorite motto, scripture, quote that gets me through tough times is: "Rule 1: Don't sweat the small stuff. Rule 2: 99 percent of it IS small stuff."

26. When someone is diagnosed I’d like to tell them: Life as you know it may be over, but that doesn't mean the life ahead of you can't be just as fulfilling. It won't be what you planned, but it can be great if you let it.

27. Something that has surprised me about living with an illness is: RA and its autoimmune cousins tend to run in packs. If you have one, you  probably have two or three. I've also learned who my real friends are.

28. The nicest thing someone did for me when I wasn’t feeling well was:  Make me laugh.

29. I’m involved with Invisible Illness Week because:  I want others like me to know they're not alone.

30. The fact that you read this list makes me feel:  hopeful that I've opened someone's eyes to the reality of living with chronic illness.

Carolan Ivey
www.carolanivey.com

2 comments:

Myndi Orr said...

thank you for sharing this and being vulnerable! I'm praying for you Carolan! I too have an invisible illness and life is tough. Here if you ever need to talk!
Myndi

Carolan Ivey said...

Thanks, Myndi! I'm privileged to have been asked to moderate the RA board on medhelp.org. I think helping other people navigate these scary waters has helped me at least as much as it has helped them. :)