30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Fibromyalgia and Myofascial Pain Syndrome. Some people say these are two aspects of the same syndrome and others say they are two separate syndromes. I don't know which it is, but while I have many fibromyalgia symptoms, most of my pain comes from myofascial trigger points in my muscles. Also, it seems chronic migraines are joining the mix.
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: 2001. My symptoms may have started in 2000 after the birth of my son, but they really kicked in the summer of 2001 after we moved.
4. The biggest adjustment I’ve had to make is: Not being able to do even half of the things I used to do. I used to be so active. I loved working in my yard, hiking and bicycling. Now it's really hard to do any of those things, even once in awhile.
5. Most people assume: That I'm fine because I look healthy. I can be dead tired and in so much pain that walking down the hall to go to the bathroom is a challenge. Then I look in the mirror and I'm amazed at how healthy I look! I'm also afraid some people assume that I use fibro as an excuse to do things I don't want to do. It's not like that but I do have to be very selective about what I choose to do.
6. The hardest part about mornings are: That I have to fit so many things into the morning. For me, the pain gets worse in the afternoon so I have to try to do all the active things like showering, housework, grocery shopping and walking the dog into the morning.
7. My favorite medical TV show is: Grey's Anatomy. All the emergencies and heartbreaking illnesses depress me but I like the characters on that show. They're all so wonderfully flawed.
8. A gadget I couldn’t live without is: My laptop. I can't sit in the regular computer chair for more than about 10 minutes because it hurts my back and I can't hold my phone to my ear for very long because it hurts my arm. So my laptop is my link to the world. And I can be productive while reclining or even laying flat on my back. It's a great thing!
9. The hardest part about nights are: Knowing that I have to get up in the morning and do it all again. My daily duties really get me down. It just seems like so much and sometimes it's so hard to get through it.
10. Each day I take 1-2 pills & 13 vitamins and supplements. They are: a multivitamin, calcium, magnesium and D, EFA, Migragard (feverfew to prevent migraines), ginger, Zanaflex (the muscle relaxer I take at night) and Tramadol (the pain med I take in the afternoon).
11. Regarding alternative treatments I: Am all for trying them first. 5HTP is the supplement that has helped me the most. I can't take it now because it can interact with the Tramadol and the Imitrex I need to be able to take when I get a migraine but when I was taking it, it really helped my muscle pain.
Unfortunately, my insurance doesn't cover alternative treatments so I haven't been able to try acupuncture or anything like that. I do get a massage once a month because my massage therapist is a great friend who gives me a discount.
Unfortunately, my insurance doesn't cover alternative treatments so I haven't been able to try acupuncture or anything like that. I do get a massage once a month because my massage therapist is a great friend who gives me a discount.
12. If I had to choose between an invisible illness or visible I would choose: Well, I guess I'm vain enough to choose the invisible illness. I'm very glad I don't look as bad as I feel!
13. Regarding working and career: I'm still trying to figure all of that out. I was a stay-at-home mom when I was diagnosed with fibro so I didn't have to quit a job or anything. I thought writing would be perfect for me but the more I learn about the publishing world, the more I wonder if I could deal with all that comes along with having a book published.
14. People would be surprised to know: How fast the pain can come and go. One day last fall I had to sit in the car while my son shopped for a Halloween costume and the next day I hiked 5 miles. With fibro, you just never know how you're going to feel from one day to the next.
15. The hardest thing to accept about my new reality has been: That I can't do as many things with and for my kids as I wish I could. Sometimes I feel like they really got ripped off getting me for a mom.
16. Something I never thought I could do with my illness that I did was: Write a book. It may be a small, simple book and it may not be published, but I wrote an entire book. The first few years that I had fibro I thought I would never accomplish another thing in my life.
17. The commercials about my illness: Are lame! They always show an old lady dramatically grabbing herself and wincing with pain and then skipping away into the sunset (or whatever) after she gets her drugs. There is just so much wrong and misleading about that image.
18. Something I really miss doing since I was diagnosed is: Landscaping my yard. I loved hauling and spreading dirt and bark and planting trees and bushes. I wish I could finish my backyard and completely redo my front yard (it desperately needs it!) Taking an ugly place and making it beautiful with plants is so satisfying. I really miss that.
19. It was really hard to have to give up: My freedom. I loved being able to do whatever I wanted on the weekends. Now there are many days that I don't feel well enough to do much of anything.
20. A new hobby I have taken up since my diagnosis is: Writing books for children. If I didn't have fibro, I would probably would have a job and never find the time to write.
21. If I could have one day of feeling normal again I would: Run! I'm so envious of the people I see out running. I love the endorphins that kick in and make you want to keep going and going. Unfortunately, running hurts too many places and aggravates the trigger points in my hip.
22. My illness has taught me: To let go of perfectionism. I don't have the energy to make things perfect anymore.
23. Want to know a secret? One thing people say that gets under my skin is: "You'd probably feel better if you'd get out more." The people who say things like this are always the people who want me to do something. They don't try to understand that being around people when I'm in too much pain to want to talk to anyone is not enjoyable and makes me feel more isolated. Or that it makes me feel worse to be around people when I'm having the fibrofog. Or that being around all the noise of a crowded room can actually cause fibrofog.
24. But I love it when people: Are understanding when I say I'm not up to doing something. The people who understand are such a blessing.
25. My favorite motto, scripture, quote that gets me through tough times is: I'm finding that the practice of just being in the moment really helps. In the present moment, I'm okay. I'm alive and breathing! It's when I start worrying about what tomorrow or the next day will be like that I start feeling unhappy. There are many quotes on mindfulness that I find comforting, but I don't feel like looking for them right now. (Sorry, I'm just feeling to foggy to remember where these quotes are!)
26. When someone is diagnosed I’d like to tell them: To do their own research. Most of the things that have helped me are things I researched and found on my own. I hate to think about what kind of shape I'd be in if I relied solely on my doctors. Knowledge really is power.
27. Something that has surprised me about living with an illness is: That life keeps going and doesn't slow down. No matter how bad I feel, there is still so much I HAVE to do in a day.
28. The nicest thing someone did for me when I wasn’t feeling well was: When my neighbor Krista bought a Christmas ornament and left it on my front porch because she knew I wasn't feeling up to shopping for one and had an ornament exchange coming up. But there are so many things I appreciate; even when someone accepts my apologies for not making it to something and doesn't give me any attitude about it.
29. I’m involved with Invisible Illness Week because: I want to help spread awareness. Until getting involved with Invisible Illness week, I didn't realize that nearly 1 in 2 people lives with a chronic illness or that 96% of those illnesses are invisible. It makes me realize that we all probably judge a lot of people unfairly. Maybe the unfriendly checker is in pain, or the person who pulled out in front you is having fibrofog and their reflexes are slow (yeah, it could be me). We don't really know what someone else is going through and it's not fair to judge them.
30. The fact that you read this list makes me feel: Good that you would care enough to take the time to read it. Thank you!
