Apparently, like always, I missed a big event. I missed Invisible Illness Awareness Week. I, like many people, live with chronic pain. Other people live with chronic illness, or disease. It’s amazing to me how many people I meet who are stronger for their chronic disabilities. We are a testament to the strength of our character by the pain we experience daily.
Yesterday I decided to ignore my surgeon’s advice about “not being stupid” with my knee, in order to play with my niece on a bouncy house … eight times. I jumped, flopped, dove, slid, and bounced like I’m not gimp.
But, of course, I am.
So, two weeks late, but still contributing, here’s 30 things you may not know about this mommy’s chronic pain.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Articular cartilage damage to the knee cap (osteochondral lesion to patella), extending the width of the knee cap, down to the bone. As of two years ago, no surgery was available. They are now testing two products.
2. I was diagnosed with it in the year: 2012.
3. But I had symptoms since: I’ve had chondromalacia for a long time. I’ve never been able to quietly sneak into a room, my knees sound like popcorn popping in the microwave.
4. The biggest adjustment I’ve had to make is: Learning my limitations, and accepting them. On my best days, I limp, though I’ve learned to walk almost completely normal, even when it hurts. I cannot walk down a flight of stairs. I cannot hop, skip, jump, run, leap, squat, or lunge.
5. Most people assume: It will heal. Heck, even I assumed that at one point. It’s not going to heal, though, it will only get progressively worse over time.
6. The hardest part about mornings are: Getting the stiffness worked out enough to stand and take those first few steps.
7. My favorite medical TV show is: Grey’s Anatomy.
8. A gadget I couldn’t live without is: My cell phone! So cliché!
9. The hardest part about nights are: Finding the right position in which to lay. My knee aches all the time, but it seems to hate lying still at night.
10. Each day I take 2 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: I’ve tried a lot of alternative treatments. I took horse pills for months, I have tried creams. I ice it, I use heat, I prop it up. I even tried a chiropractor, which was a horrible, horrible decision.
12. If I had to choose between an invisible illness or visible I would choose: Sometimes I think, “At least if it was visible, people wouldn’t stare, or think I’m faking it.” But then, when I have “good” days, and the pain is manageable, even I tend to forget I have a chronic injury … until I meet those dang stairs!
13. Regarding working and career: I refuse to let my leg slow me down, even when it SLOWS me down. I carry boxes at work, I haul machines around. When it gets bad, I bring my cane.
14. People would be surprised to know: I am always afraid to fall. I’m afraid to lose my balance and slip. I’m afraid of people running into me walking down a flight of stairs, or banging into me when I’m walking slow (or using a cane).
15. The hardest thing to accept about my new reality has been: The fact that I do, in fact, have limitations. I can’t chase my child through the park. I can’t run to grab him if he falls. I also cannot run through the rain in a downpour. There are so many things I can no longer do, which is so frustrating, even two years later.
16. Something I never thought I could do with my illness that I did was: Become a stronger person. I have gone from almost 100% atrophy in my left quad to complete muscle regrowth. The gym is the one place where I find solace and strength. It makes me feel stronger, and more whole.
17. The commercials about my illness: There aren’t many. I relate to the arthritis joint pain commercials, but I don’t have arthritis.
18. Something I really miss doing since I was diagnosed is: Dancing. I used to live for dancing, and would dance around the house. When I brought my son back from the hospital, as an infant, I would waltz him around the living room to put him to sleep. I miss that.
19. It was really hard to have to give up: High heels. I can’t wear high heels, I can only wear flats. On the rare occasion that I do slap on some heels, my swollen knee thanks me the next day.
20. A new hobby I have taken up since my diagnosis is: Strength training.
21. If I could have one day of feeling normal again I would: Run up and down a flight of stairs like the scene from “Rocky.”
22. My illness has taught me: Compassion for people on crutches, in wheelchairs, and on a cane. I never noticed how rude and pushy people are concerning disabled people. I’ve been huffed at, shoved, almost knocked into, and honked at on my slow days.
23. Want to know a secret? One thing people say that gets under my skin is: “Why don’t you just get surgery?” Because, first, they don’t have a surgery that will “work” on my knee. Surgery won’t fix it. Second, I am a single mother, and recovery takes six weeks. I can barely afford to be down for three days, especially around someone who wants me to follow him into the bathroom, the bedroom, the kitchen, etc.
24. But I love it when people: Offer help. I was limping with groceries through a Target parking lot. Two cars revved their engine impatiently, one person honked. A very large man stepped right out into the middle of these impatient drivers, put his hands out, and helped me to the other side of the street. I almost cried. Wow, I’m almost crying remembering his kindness.
25. My favorite motto, scripture, quote that gets me through tough times is: I live my life by pain levels. “Today is a 4. I can tolerate a 4. It’s not that bad. Last week was an 8, which was pretty bad, but not as bad as three months ago when … .” Gauging my pain and rationalizing it helps me get through the day.
26. When someone is diagnosed I’d like to tell them: Well, mine is not a normal diagnosis. But, I would tell them that with modifications, and a positive attitude, it will be okay.
27. Something that has surprised me about living with an illness is: My humor concerning my leg, and my ability to realize I’ll live with this for the rest of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: It’s always friends and my parents. My mom has bought groceries, brought me dinner, and given my child a bath. She is also the one who picked out my cane, surprising me with it. It’s hot pink, with roses, affectionately named Pink Rosie. My dad has driven out at midnight to pick up my pain pills, and bring me a knee brace.
29. I’m involved with Invisible Illness Week because: There are so many of us living with chronic pain, chronic illness, and chronic disease. A lot of us are moms. When you live with chronic illness, it is rough. Throw some tiny people into the mix, and it demonstrates the strength of our character.
30. The fact that you read this list makes me feel: Appreciative. Deeply, deeply grateful. Maybe it will make people pause before trying to outrun the hobbling woman that they would have passed, anyway, without as much anger or annoyance involved.
Want to read about other peoples’s testimonials? Click here: Invisible Illness Week, 30 Things Memes.