During the month of September, one week has been set aside nationally for those with Invisible Illness--to encourage education about these conditions, facilitate conversations, and advocate for better tests, treatments, and cures.
September was a bit crazy for me, so I missed posting about it. But thanks to my dear friend PerpetualSpiral, I found the Meme that many used that week:
30 Things About My Invisible Illnesses You May Not Know (unless you've read my entire blog for the past 5 years and even then...)
1. The illnesses/conditions I live with are: Chronic Fatigue Syndrome (1995), Fibromyalgia(1996), TMJ(1992), IBS (thankfully better managed with probiotics and dietary changes)(2009), GERD (ditto)(2009), Iritis (autoimmune eye disease)(1997), Chronic knee pain (after slip & fall)(2005), esophagitis(2009), Chronic Daily Headache (slowly getting better and no longer technically "daily")(2004), Complex Migraine Disease(2004) (Migraines since 1995), Anxiety(1998), OCD(1998), Insomnia (2005), tardive dyskinesia due to medication (2009), environmental allergies (2007), drug allergies (1990-2009), cervical disc degeneration (2008).
2. I was diagnosed: see above
3. But I had symptoms since: Many conditions diagnosed this year, I've had since 95/96.
4. The biggest adjustment I’ve had to make is: pacing myself and being satisfied with that.
5. Most people assume: I'm just depressed and overweight (thus depressed)
6. The hardest part about mornings are: If I've slept, and slept thru a dose of medication, the pain and waiting for meds to kick in. If I haven't, trying to get to sleep.
7. My favorite medical TV show is: House MD of course :)
8. A gadget I couldn’t live without is: Tv/vcr (no DVR yet lol), Cell phone, borrowed laptop, sewing machine for quilting
9. The hardest part about nights are: pain, insomnia, nightmares, getting quality sleep.
10. Each day I take 2 supplements, 2 OTC meds, 6 meds (have 3 others for "as needed")
11. Regarding alternative treatments :I would LOVE to get acupuncture. Hoping new neuro has this available as a PT option (because insurance will pay then). At $90 a treatment, it's a luxury.
12. If I had to choose between an invisible illness or visible I would choose: I don't know. There are times when I have to use a cane or wheelchair (or wear my sunglasses indoors during iritis flare). I'm losing my hair due to the depakote. But I can fake a smile that is Oscar-worthy and there are times ppl have no ideal that I have a bone-crushing headache or pain. My friends always think I've found a new treatment until I admit, no, still looking. I think I might get more support from my extended family if it were a visible disability, but even then I don't know I'd want to trade. I don't feel like ppl treat me differently when I'm in the wheelchair. I have friends with visible disabilities and I don't think it's any better or any worse.
13. Regarding working and career: Since my job is mom, I've had to adapt. JM does alot of the physical parenting (driving, meetings) as well as homework w/ JB, and I do most of the homework help for JQ/nurturing parenting (except math ::shudder::). I've had to give up piano for a time, not being able to predict when a migraine will strike and frequent illnesses (before probiotics) was hard to schedule lessons. Many schools offer lessons now, which is just more convenient for parents. But that's why I'm so excited to start Etsy and need to work more on Zazzle--I work on my own schedule and energy/pain levels. And it is so rewarding it does not feel like work :)
14. People would be surprised to know: my pain and fatigue is 24/7/365. Times 14 years. There is no time off for good behaviour.
15. The hardest thing to accept about my new reality has been: not being the kind of mom I always wanted to be, the kind of wife I always wanted to be. But I have a kind of closeness with my family I think not enough people share.
16. Something I never thought I could do with my illness that I did was: learn to love exercising on the treadmill, self-taught HTML (with brainfog, no easy feat!)
17. The commercials about my illness: HATE Excedrin migraine/HATE lyrica for FMS/HATE any otc "pain" med. They completely trivialize how devastating and painful these conditions can be. Even when my migraines were "mild" and I used Imitrex I could never be out in the sun at a kid's sports match. Tried Lyrica, did nothing, but so many ppl think the actor has fibro. And if one advil takes away your pain, shut up already. That's not real pain. No I'm not bitter, why do you ask? LOL
18. Something I really miss doing since I was diagnosed is: hiking, being able to go all day, all night at themeparks, rollercoasters, making gourmet dinners & elaborate desserts (my record is a cake that took 3 days to make. Chocolate Damnation and DAMN it was good!). I've been ill since I had my kids so I don't know what it's like to have energy/no pain for them.
19. It was really hard to have to give up: piano lessons. Again, such a joy it doesn't feel like a job. But I hope to get that back. Hard to give up the dream of having 4 kids. That was the worst. Wouldn't trade my 2 for the world, but seeing my nephew brings on the baby lust! And I've always dreamed about having my own wildlife rehabilitation place. I know I may be able to help at a facility, but after reading "Ranch of Dreams" I wanted my very own piece of land. I grew up with a lot of animals, it feels downright empty sometimes with "just" a dog and 2 fish! I also wanted to play violin but the head position is just too hard on my neck.
20. A new hobby I have taken up since my diagnosis is: quilting (93), Jewelry making (08), Singing National Anthem (04), photography, Knitting (07), walking on treadmill (04), blogging (04), Twitter/FB (09), making graphics, tweaking HTML on blog
21. If I could have one day of feeling normal again I would: spend day touring Paris with family
22. My illness has taught me: the value of true friends, real empathy, how to be my own health advocate, how much my family loves me
23. Want to know a secret? Somewhere, I have Donnie & Marie Barbie Dolls LMAO
24. But I love it when people: make me laugh
25. My favorite motto, scripture, quote that gets me through tough times is: I don't have a particular one. However it always seems when I need to hear something, I will get an email, or read a quote in a book, or on Twitter and it's exactly what I needed. I don't think that's a coincidence. Some of my favorite inspiration comes from Marianne Williamson, Maya Angelou, Sheila Walsh, and Dr. House (lol)
26. When someone is diagnosed I’d like to tell them: Educate yourself. Educate your doctor (a good one will let you). Educate your family and find a good support system, whatever that means to you. Expect to go through the grieving process. Handle it the way YOU want to handle it, not how other people do. No one's experience is just like yours.
27. Something that has surprised me about living with an illness is: I'm less afraid to try things now than before. Could be because I'm getting old too LOL
28. The nicest thing someone did for me when I wasn’t feeling well was: brought over a complete dinner for my family when I was healing from gallbladder surgery
29. I’m involved with Invisible Illness Week because: so many people in this country have them, but because there's not a pink ribbon campaign, it goes unnoticed.
30. The fact that you read this list makes me feel: hopefull....that someday there won't need to be a "week" because people will have more empathy for others. But really I did this list for me. I hope my friends and newcomers read it, but this was a good exercise for me to do. So even if no one reads it, I still gained quite a bit :)
Labels: 30 things about my II, Invisible Illness Week, Meme
