Sunday, September 7, 2014

30 Things About My Invisible Illness(es) You May Not Know

It's Invisible Illness Week!

1. The illnesses I live with are: systemic juvenile idiopathic arthritis (SJIA or Still's Disease), psoriasis, fibromyalgia, general anxiety disorder, depression, and patellofemoral arthralgia of both knees (yeah, the last couple are newerish)
2. I was diagnosed with it in the year: SJIA - 1994; psoriasis - 2010; fibro - 2012; GAD, depression, and the knee thing - 2014
3. But I had symptoms since: SJIA - Nov 1993; psoriasis & fibro - 1995ish?; GAD, depression, and the knee thing - who even knows, but since I was pretty young.
4. The biggest adjustment I’ve had to make is: having to look at my electronic medical record to remember everything I have!! Nah, but really the biggest thing has been to take care of myself and put other things on the back burner.
5. Most people assume: that my problems are because I'm overweight, but I'm overweight because of my problems!
6. The hardest part about mornings are: waking up. I could hit snooze forever.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: I used to say my laptop, but now it's my phone. I have so many apps on there, from anxiety calming apps to snapchat and instagram to tumblr, twitter, and facebook to keep my advocacy up on the go. It also helps me connect with and talk to the most important people in my life, so that's pretty baller.
9. The hardest part about nights are: the inconsistency in my energy levels. Sometimes I get home from work just half dead and can't do much. Other days, I can't sleep because of too much energy. Other times, it's because of too much pain.
10. Each day I take 10-14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: embrace those that have scientifically been proven to help my various conditions, but also don't follow those a lot (read: I need a massage y'all).
12. If I had to choose between an invisible illness or visible I would choose: invisible. The problem with the invisibility issue will not go away if I just had a visible disease, but only is us invisible peeps band together to raise awareness. Also, as frustrating as it is, I am privileged to not constantly be inspiration porn for people.
13. Regarding working and career: I don't even know what to say. I'm good at my job and I like it, but I don't love it. There are definitely more advocacy related fields/positions I wish I could go into. It's just a matter of getting those people to bite.
14. People would be surprised to know: that I grew up in an abusive home. Abuse is actually one of those things that's been studied and found to increase likelihood of having fibro, so it shouldn't be that surprising, but I'm nice haha.
15. The hardest thing to accept about my new reality has been: the shifting parameters. Look, I've been sick since before I had the chicken pox, so there isn't so much a new reality... but I've learned to do more self care. The frustrating thing with that is that my body's definition of okay and shitty consistently change, along with my energy and pain levels. I just wish it was more predictable.
16. Something I never thought I could do with my illness that I did was: to be otherwise healthy. I've been able to have some great role models lately, and I'm definitely working on it.
17. The commercials about my illness: are total BS. I don't go golfing. The good news is that pharma is listening to patients say that, and is trying to make changes.
18. Something I really miss doing since I was diagnosed is: coloring all day? Really though, I think one of the toughest things is not being able to go and do what I want without thinking about it.
19. It was really hard to have to give up: running. I was told by my physical therapist earlier this year that I'm not allowed to run for a while. I love the feeling of pushing myself to do more than I could before, and I'm feeling a little bummed about this. However, my knees are getting stronger and we can soon start running rehab.
20. A new hobby I have taken up since my diagnosis is: I'd like to think my music stuff is a good hobby, but I also consider my advocacy work to be a nerdy hobby.
21. If I could have one day of feeling normal again I would: use it for my wedding day, and I did. I'm so glad. If I had another one though? I'd want to go on a long hike or run or go be super active without bringing the cane just in case.
22. My illness has taught me: to fight for what I need.
23. Want to know a secret? One thing people say that gets under my skin is: when they give me advice on what herbs to try or give reiki healing a shot. Y'all, I've been sick for 21 years now. I know what works for me and what doesn't.
24. But I love it when people: do thoughtful things like ask if stairs are okay today when we're walking or when someone walks slower than the group to match my pace or when I get texts from people to check in on me while I'm flaring.
25. My favorite motto, scripture, quote that gets me through tough times is:
"When we are no longer able to change a situation - just thinking of an inevitable disease such as inoperable cancer - we are challenged to change ourselves. In accepting this challenge to suffer bravely, life has a meaning up to the last moment, and it retains this meaning literally to the end." -Victor Frankl
26. When someone is diagnosed I’d like to tell them: to do their research. Learn as much as you can as quickly as you can about your illnesses. Doctors aren't unable to make mistakes, and being an informed patient may just save your life - and it'll connect you with others.
27. Something that has surprised me about living with an illness is: how much more of a family I have in the chronic illness community than with my large extended batch of relatives. I feel there is less judgment, less frustration and agony over decisions. There's an understanding there that other people often cannot have.
28. The nicest thing someone did for me when I wasn’t feeling well was: just hold me while I cry and assure me that my feelings are valid - and that everything will work out.
29. I’m involved with Invisible Illness Week because: all my illnesses are invisible to people who don't know them. We have to raise awareness.
30. The fact that you read this list makes me feel: good. Somethings have changed since the last time I did this, both for the better and for the worse. I think it's interesting to track those changes.

2 comments:

  1. That is interesting about abuse being common in people who have fibromyalgia. Maybe its like your body gets so used to being hurt, that it just keeps on hurting even after the abuser is gone!

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    1. It could be. They've done studies comparing Holocaust victims to their peers in age, and found that the Holocaust victims were something like 70% more likely to have fibro. It was very interesting!

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