1. The illness I live with is: Fibromyalgia
2. I was diagnosed with it in the year: April 2009
3. But I had symptoms since: It really hit September 08, but some symptoms I'm starting to think I've had my whole life.
4. The biggest adjustment I’ve had to make is: My entire lifestyle. Us "sick" people all say this, but "healthy" people have a hard time of grasping that. Pace yourself is all you here, but do you understand what that means. I can't go hang out with you because if I'm not in bed by 10 I can't wake up in the morning. I can't walk back to my dorm for a nap because it would take me an hour just to walk there and back and I wouldn't be able to get back up. When I'm done walking from class to class at the end of the day, I can barely walk. That is pacing yourself. Knowing what you have to get done and when you're out of energy, there is no "just one more thing". You can't move.
5. Most people assume: I'm healthy. I'm a generally happy person, and I am only 19. They assume when I say "I'm sick" that it's just a cold and I'll be fine in a few days. They don't understand that I mean I can barely stand, I'm chronically nauseous, and I won't be fine for weeks, months, or years.
6. The hardest part about mornings are: Getting up. Convincing myself I want to get out of bed, and that the day is worth fighting through this pain.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: My phone. It has my google calendar which with my brain, I could not live without. Now I also have the internet, which is great for looking stuff up because again, my brain isn't the same as a year ago.
9. The hardest part about nights are: going to sleep. Trying to get relaxed enough to fall asleep is hard when every joint is screaming and no position is comfortable for all your joints at once.
10. Each day I take: Only my thyroid medicine. I have tried all forms of anti-depressants to treat fibro, as well as sleep medicine, anti-inflammatories, pain medicine, and ended up with narcotics when I can't stand the pain and need to dull it a little.
11. Regarding alternative (Holistic) treatments I: Eat healthier, medicinal messages from my wonderful fiance, and talking with others such as a support group.
12. If I had to choose between an invisible illness or visible I would choose: I wouldn't say either, they both suck for very different reasons.
13. Regarding working and career: I am a full time Music Education Major. And if you've ever talked to an Music Ed major, you would know that this means double the amount of work and hours than what it sounds like. I also intern at my church. I plan on being an Elementary Music teacher, and can't wait to get started. I know this will be hard, and my body screams at me everyday, but at some point you have to do what you love, and for me, music is healing.
14. People would be surprised to know: How sick I really am.
15. The hardest thing to accept about my new reality has been: I am a person who, if I start something, I have to finish it. This isn't the best on my new body so I'm still toeing the line of pacing.
16. Something I never thought I could do with my illness that I did was: Help start an advocate and support group at OU.
17. The commercials about my illness: are just now starting to come out and they are mainly for the elderly.
18. Something I really miss doing since I was diagnosed is: staying up all night with friends.
19. It was really hard to have to give up: Riding horses
20. A new hobby I have taken up since my diagnosis is: making jewelry. (thanks mom :D!)
21. If I could have one day of feeling normal again I would: Do something active, for a brief while after they fixed my thyroid and before my knee got bad, I loved to run!
22. My illness has taught me: We all have different parts of our life. Our lives changes for many reasons and we have to learn to adapt and find new passions for each stage.
23. Want to know a secret? One thing people say that gets under my skin is: "You just have to bear through it." "Just get out of bed despite the pain." "Just exercise and it will all be better." You have no idea, don't make it sound like it's easy and I'm just being a whimp. Also, I can barely walk when I'm done with classes as is, I walk over 2 miles a day between classes, if I were to do *extra* exercise (apparently only exercise outside of daily life counts, you have to go to a gym for it to be real) I wouldn't be able to get out of bed the next day.
24. But I love it when people: Ask me questions and really try to understand what I'm going through. I don't want to be seen as "sick Callie" I want to be "Callie who is amazing despite being sick"
25. My favorite quote that gets me through tough times is: "I hereby Command you: be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you where ever you go." Joshua 1:9. I found this when I was about to leave for college, but it always pops back up in my head for any circumstance.
26. When someone is diagnosed I’d like to tell them: Please no you are not alone! Find a support group, inform your friends and family, and don't be afraid to ask questions or for help.
27. Something that has surprised me about living with an illness is: all the little things we take for granted. Even as basic as walking. I do not have a cane, but I'd might as well with how much I use Alex. I feel bad sometimes, even if he doesn't mind. We no longer hold hands when we walk. I need help walking so he offers me his arm and helps me walk like we were from the fifties. It might seem old-school and cute, but it's not cute when it's a necessity to walk.
28. The nicest thing someone did for me when I wasn’t feeling well was: tell me they understand and not to worry about it. I always hate canceling things, and when you tell me you understand, it makes it more bearable.
29. I’m involved with Invisible Illness Awareness because: Everyone is deserving to be heard, and even if we're to sick to picket, and hold rallies, and stir revolutions, we still need to be heard and this is a small way to give those of us to sick to advocate a chance to do just that.
30. The fact that you read this list makes me feel: loved, honored, and heard. Thank you!
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I just read this post and it made me want to cry because I know every word and have felt all of this in my life. My own mom telling me for years I was lazy and stayed in bed to much, that me saying I couldn't remember things was just a lie. I am 43 and just told I have fibro, but like you the doctor is sure I have been suffering for years with it. It's been a couple of weeks since being told and I have had several break downs thinking this will never go away. I also have thyroid disease like you. So I'm glad I found your blog and know I'm not alone. I have a wonderful girlfriend that is so supporting me with this and tells me we will take it one day at a time through this. She has read everything she can find on the inernet about it. But it still does hurt that I know I slow her down when we have plans and I just can't get out of bed.
ReplyDeleteThank you so much for sharing your life and letting us know we are not alone..
I suffer from something in the chronic fatigue category and just wanted to say I relate, and I'm sorry. It's very hard. I've learned a lot about myself and have grown a lot, but it is very, very hard.
ReplyDeleteHats off to you for owning it and talking about it and sharing bits of your life.