30 Things About My Invisible Illness You May Not Know – 30 Things Meme
1. The illnesses I live with are: Chronic Migraines, Sciatica, Chronic Neck Pain (possibly undiagnosed Degenerative Disc Disease), Clinical Depression (Depressive Disorder), Generalized Anxiety Disorder, Insomnia2. I was diagnosed with it in the year: Depression and Migraines were diagnosed at age 18 (1998), though the migraines at that time were Episodic, not Chronic. Migraines became chronic when I was 32 (2012). Chronic Migraines are defined as 15 or more days of migraine a month.
3. But I had symptoms since: Depression/anxiety since early teen years. Sciatica and neck pain developed gradually over the years starting around 2003
4. The biggest adjustment I’ve had to make is: Listening to my body and allowing myself more rest and self care. As a mother this is sometimes hard.
5. Most people assume: I have had people assume that I am lazy. Calling out of work with a migraine I have had bosses and co-workers assume that I am lying. I have had bosses assume I just had a hangover and tell me "you shouldn't drink so much" even though I hardly ever drink alcohol. I have had friends and co-workers assume that I was using drugs because of being pale, thin, and having a "glassy look" to my eyes. (even though I don't even take prescription narcotics or use other drugs) I have had people assume that I am just seeking attention.
6. The hardest part about mornings are: Getting out of bed! Sometimes this is because of pain - I just want to stay in bed! Other times this is because I didn't get much sleep, or didn't really get restful sleep - and I am just so very tired!
7. My favorite medical TV show is: House MD - I love the sarcasm and wit - and also love the medical mysteries of trying to figure out what an illness is without definite obvious symptoms
8. A gadget I couldn’t live without is: My smart phone! When I have days that I need to stay home and stay in bed, it helps me feel connected to the world and my friends rather than isolated and alone.
9. The hardest part about nights are: Getting comfortable, falling asleep, staying asleep. Pain in my neck and hip mean that I must change position often.
10. Each day I take 7 (average) pills & vitamins. (No comments, please) Nortiptyline 20 mg daily - this controls my migraines and reduces the number of occurrences. Without it I get migraines almost daily. Ibuprofen to help with pain. Some Vitamins.
11. Regarding alternative treatments I: am still seeking the right fit for me. I am open to hearing about and trying new things - but it bothers me when people offer unsolicited advice or say "you should try this" - or when people assume I haven't tried a certain thing yet.
12. If I had to choose between an invisible illness or visible I would choose: I think I would choose something more visible - simply because I wouldn't have to worry about people assuming I was making things up.
13. Regarding working and career: I worked as a waitress for many years. I am not currently working. It became much harder to work when my migraines became chronic and I would need a job with employers who were very understanding of my need to take frequent time off and avoid certain things.
14. People would be surprised to know: I am afraid every day. Afraid of when that eventual "big one" (migraine) will hit again. Afraid of how bad the pain will be today. Afraid of not being a good enough mom for my kids, and not being a good enough wife to my husband.
15. The hardest thing to accept about my new reality has been: There is no cure for chronic migraines. They can be controlled, and symptoms can be treated, but this neurological condition is permanent.
16. Something I never thought I could do with my illness that I did was: Make new friends who understand and accept me.
17. The commercials about my illness: Drive me crazy!! The "Excedrin Migraine" commercials really piss me off! Very few people with migraines actually get relief from that medicine. It is very good for a headache. But does not really work for a true migraine - which is NOT a headache. And people who take any Over The Counter Medicine for Chronic Migraines are at risk for getting MOH - Medication Overuse Headache - which is a SEVERE, extremely painful ongoing migraine that is very hard to get rid of! This can occur when you take any kind of medication more than 3 times a week. This is not explained to people.
18. Something I really miss doing since I was diagnosed is: Being able to go out without worrying about "will this cause a migraine"? or "how long can I be out before my back pain is too much for me?" Just going out and not having to take medications with me, just in case - and needing to leave early or cancel plans altogether.
19. It was really hard to have to give up: Quality time with my family. Driving at night (glare from headlights is not good) Rollercoasters and carnival rides (not a good idea) Certain foods and drinks.
20. A new hobby I have taken up since my diagnosis is: Crafts. Jewelry making, paper crafts, writing, blogging, learning about medicinal herbs
21. If I could have one day of feeling normal again I would: Take my family out on a fun day trip somewhere they really want to go.
22. My illness has taught me: A lot of self-awareness. Being constantly aware of the signals my body gives me, because paying attention to those early warning signs is the difference between staying home or ending up in the emergency room.
23. Want to know a secret? One thing people say that gets under my skin is: When people refer to my migraine as a "headache".
24. But I love it when people: offer support in the form of friendship, listening, offering help (not just offering advice but offering to do an actual thing for me)
25. My favorite motto, scripture, quote that gets me through tough times is: "Progress, not Perfection" - it reminds me that whatever small steps I take during the day are worth celebrating - even if the job isn't done, and even if it's not perfect - I did a thing and that is awesome!
26. When someone is diagnosed I’d like to tell them: Find a doctor who will really listen to you. Research as much as you can. Try different things on your own terms - and if it doesn't work for you, move on to something else.
27. Something that has surprised me about living with an illness is: my own ability to handle things - I am stronger than I ever imagined.
28. The nicest thing someone did for me when I wasn’t feeling well was: Help me with the kids! Taking the kids out for awhile so I can rest while also knowing that my kids were getting attention and having fun!
29. I’m involved with Invisible Illness Week because: I want to help spread awareness. Not just for migraines, but for all kinds of conditions that aren't visible. There are many people who are struggling to get help, get a diagnosis, and have people take them seriously but their condition is not visible so they aren't taken seriously.
30. The fact that you read this list makes me feel: Happy! Loved! Understood!
