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30 Things About My Invisible Illness

In honour of Invisible Illness Awareness Week, here's my contribution to the "30 things" meme that's been making its way around the internet.

1. The illness I live with is:
Rheumatoid Arthritis + Fibromyalgia

2. I was diagnosed with it in the year:
1991 + 2003

3. But I had symptoms since:
I was ten years old. It was actually 'dramatic onset' - which means that I had no prior symptoms at all until I got super sick and a diagnosis was made within 10 days.

4. The biggest adjustment I’ve had to make is:
Learning how to say no and pace myself... I'm naturally inclined to always do too much.

5. Most people assume:
That I'm too young to be sick, or that I'm fine simply because I don't 'look' sick.

6. The hardest part about mornings is:
Waking up tired, stiff, and in pain. I always lie in bed for a little while and assess how I'm feeling and plan how to tackle my day, and what I can likely accomplish given the pain and energy levels I woke up with that day. I used to start every single day with a super-hot shower and yoga/stretching, but haven't really been able to manage that with a baby. That fact sometimes makes it tough to manage my health the way that I should.

7. My favorite medical TV show is:
ER (RIP)

8. A gadget I couldn’t live without is:
Hand railings on stairs! And the internet, which has been amazing to me as a means to find others like me from whom I can draw encouragement and support as we learn together.

9. The hardest part about nights is:
Being so far beyond exhausted that vocabulary fails me, but being unable to sleep. My fibro often causes insomnia, and a bad flare means that even the weight of my blanket on my legs can cause pain that makes it pretty much impossible to sleep.

10. Each day I take:
A bunch of different vitamins and supplements, and occasionally some codeine or steroids to help me through a particularly rough week. (I used to be on lots more, but had to stop taking my arthritis meds when they were pulled by the FDA - and there's nothing I can take that helps my fibro.)

11. Regarding alternative treatments, I:
Think they're a great complement to traditional treatments, but need to be as well-researched as prescription drugs. And it needs to be a very personal choice. Nothing makes me more angry than people who try to shove cure-all remedies on me without knowing about my specific disease or without respect for the other things that I'm already doing. It's even more offensive when they earn a commission on sales of said product.

12. If I had to choose between an invisible illness or visible I would choose:
I'm really not sure. I love that an invisible illness means that I can blend in and pretend to be 'normal'... But it's also really hard, because people are ignorant or can sometimes forget. I had a particularly horrible incident on a birthday in my early 20s where I was very flared up and needed to use a handicapped parking spot. A lady came and yelled at me for about ten minutes, and then reported me 'for stealing her grandma's sign' - I will never, ever forget what that felt like or think about that birthday without crying.

13. Regarding working and career:
It has always been a challenge to manage a career *and* a chronic illness, but it makes me very proud to have done it. Now with a baby and more demands on me at home, I chose to start a business where I can work almost exclusively from home. I don't really feel that I had a choice, but I'm grateful for a career where this is an option - and I'm loving it so far.

14. People would be surprised to know:
I am always, always, always in pain - and usually at a level where it's hard for me to concentrate on anything else. When I occasionally lose my focus, I'll usually pass it off as a blonde moment, but it's not. I'm constantly making calculations in my head, weighing the cost of anything that will take my energy or requires something physical.

15. The hardest thing to accept about my new reality has been:
Not having the energy to do what I want to do.

16. Something I never thought I could do with my illness that I did was:
1. Finish a marathon - it took me 8 hours and 27 minutes, but I did it.
2. Be pregnant and have a baby - probably the one thing I was most afraid to do, but it's turning out to be *so* amazing.

17. The commercials about my illness:
Annoy me because they always seem to show old people or try to elicit sympathy/pity. But at least we're talking about it, right?

18. Something I really miss doing since I was diagnosed is:
This is going to sound really sad, but I don't really remember before. It's okay.

19. It was really hard to have to give up:
The friends and other people in my life who just can't deal with my limitations or make an attempt to understand me.

20. A new hobby I have taken up since my diagnosis is:
Lots of things, I guess, because I've been sick for a long time.

21. If I could have one day of feeling normal again I would:
Spend the entire day with friends and people who I love, going out and being busy and having fun. I don't think it would matter what we did, I would just love to have the freedom to be fully present in each moment, not worrying about what every tiny thing I choose to do is going to cost me.

22. My illness has taught me:
To stand up for myself and what I need (I'm not that great at it, but I'm getting better all the time). To appreciate the friends who really work to understand me, and to let go of the people who don't. To appreciate small things in small moments.

23. Want to know a secret? One thing people say that gets under my skin is:
"Oh, my grandma/grandpa/aunt/cousin has that too." And then they assume that my disease is exactly the same. It's not.

24. But I love it when people:
Know how to give a very gentle hug.

25. My favorite motto, scripture, quote that gets me through tough times is:
"When you come to the edge of all the light you know, and are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: There will be something solid to stand on or you will be taught how to fly." - Barbara J. Winter

26. When someone is diagnosed I’d like to tell them:
Your life is not over. You're just beginning a new chapter, and it will be full of so much joy if you allow it to be.

27. Something that has surprised me about living with an illness is:
Even though it slows me down, it doesn't stop me from doing anything.

28. The nicest thing someone did for me when I wasn’t feeling well was:
This list is so long... Shoveling my snow. Making me soup. Sitting on the couch with me and watching movies. Remembering that I'm sick and asking me how I'm doing. Coming with me for an appointment. Visiting me after surgery. Offering to drive. Not being embarrassed to walk beside me when I'm really limping. Sticking up for me. And maybe most importantly, making me laugh again.

29. I’m involved with Invisible Illness Week because:
I think it's important for all of us - sick and healthy - to work a little to understand each other.

30. The fact that you read this list makes me feel:
Grateful.

Labels: Arthritis/Fibromyalgia, Can You Handle The Truth?, Stuff I Found Online

posted by Lindsay @ 12:27 AM