I know this was from invisible illness week, but I missed that so I’m going to post it now and say it’s for HAWMC(Health Activist Writer’s Month Challenge:)
1. The illness I live with is: Fibromyalgia and Chronic Fatigue Syndrome, and also Hypermobility, IBS, and Scoliosis.
2. I was diagnosed with it in: februrary 2011
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is: Having to basically take two years off school- one being home tutored, and now not being able to go away to college this year.(Although many people assume it’s my fault for not going away to college, that I’m not working hard, not that I’m taking a year so that I hopefully can work hard when I get there)
5. Most people assume: That fibro is easily dealt with. It’s not. It’s an invisible illness, so no, I don’t look sick. But that doesn’t mean I’m not- all the time. People can’t see pain, or fatigue, so they assume it’s not there- it’s easier that way for them, rather than learning how to deal with a sick person in their lives. Even if they do recognize it really exists, people assume it’s around the level of much less serious things, and dont grasp how really debilitating, chronic, and intense the symtoms can be for a lot of people.
6. The hardest part about mornings are: Everything? One hard part is dragging yourself into consciousness and out of bed when you feel more tired than you did before going to bed at night(which trust me, was pretty exhausted) Then you have to start your day on zero energy, try to make breakfast, and take a shower, which is hard first thing in the morning to stand for that long and use muscles. Not to mention that some mornings, showering can be painful because during a flare your skin will get so sensitive that even the water hitting it will hurt.
7. My favorite medical TV show is: I don’t have one…I mean, Doctor Who probably doesn’t count, does it? :p
8. A gadget I couldn’t live without is: My laptop! (MacBook Air, the most fibro-friendly laptop :D) I spend most of my time during flares using it to watch Netflix.
9. The hardest part about nights are: Forcing myself to go to sleep at a normal hour. I *never* feel like I’ve accomplished nearly enough in a day because I’ve usually spend half of it fighting pain or muscle spasms, or fatigue, headaches, fibrofog…etc. I’m also a night owl, so on the occasions I do feel well, and want to do things(I practice best and write best at night) I have to force myself to go to sleep or I know I wont feel well enough to do anything the next day either.
10. Each day I take 5-8 pills & vitamins. Totally depends on the day… But i take Melatonin, B12, Magnesium, E, C, and I just started D-Ribose. Tylenol/Tylenol PM are the only OTCs that work for me. Then I have Flexeril, Skelaxin, Parafon Forte, Mobic, extra strength Naproxin, and others i dont take much. But compared to a lot of people, I hardly take anything.
11. Regarding alternative treatments I: like them a lot better than heavy medications(like trying to take Lyrica or Cymbalta) but things only help a little. I do yoga therapy and massage therapy, I’ve done acupuncture, chiropractic, PT, just about everything. Nothing cures any symptoms, just sometimes they make it slightly easier to manage.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. As horrible as it is when no one believes/understands that I’m sick, it is sort of nice that for a day every once in awhile, if I’m feeling better than usual and out with friends, I can pretend I’m healthy too.
13. Regarding working and career: I’m going to be a flutist. I have no idea how it’s going to be possible to get through music school with fibromyalgia, but I plan to make it so.
14. People would be surprised to know: That although I wish I were healthy and it doesn’t make facing the rest of my life with fibro any easier, I’m glad I’ve met all the people I have through being sick, and I’m glad that now I see people differently and know how to not judge anyone with an illness.
15. The hardest thing to accept about my new reality has been: The lack of prediction and control in my life. I am SO careful to plan my time, (or “spoons-” if you havent you should read the article about Spoon Theory by Christine Miserandino) and my energy, but even still I can have a flare in the middle of nowhere and be stuck in my bed not being able to do anything for days.
16. Something I never thought I could do with my illness that I did was: do well at pretty much any audition I had last year or this.
17. The commercials about my illness: Are one of my least favorite things. Because of the commercials, most people do know that fibromyalgia exists, and that it’s got to do with pain.(However, that doesn’t help me much, because people say to me “but everyone who has fibromyalgia is old! you can’t have it!”) The commercials leave out a lot, like the fatigue/brain fog/overlapping conditions/blurry vison/sleep problems, etc. And of course, I think the worst part is that they make it sound like the drugs work- which of course, it’s a commercial. It just gives people the wrong impression, they tell me that “Oh I saw this commercial and if you took Lyrica you’d be healthy again” when in reality, Lyrica doesn’t work for everyone, the side effects are hell, and I personally don’t take it because it makes fatigue worse, so it wouldn’t help me get back to living life healthy again.
18. Something I really miss doing since I was diagnosed is: Going to school every day, seeing people. Not having to decline going out with friends alll the time because I know my body can’t handle much, and just sitting down to practice flute for hours at a time without so much pain.
19. It was really hard to have to give up: Carefree practicing. I miss being able to plan my time easily, trust that if I dont get something done now I’ll be able to do it later. There have been SO many times I’ll count on being able to finish something the next day, because I felt fine when I made that decision, but the next day I’ll be in too much pain to do anything. It really makes everything so much more difficult when you can’t predict what your body will allow you to do.
20. A new hobby I have taken up since my diagnosis is: Writing, and my fibro twitter/tumblr. I keep trying to find ways to describe fibro well to people who are healthy, and to help others with it.
21. If I could have one day of feeling normal again I would: Run. I hate running, but I would just because I could. Drive really far. Practice nothing but technique on flute without taking frequent breaks. Stay up late being out with friends.
22. My illness has taught me: Not to judge people. I know how people who don’t know me judge life decisions I have to make, or who I am. Even to people I know well judge me for it sometimes, when it’s because of my illness not my lack of effort or intelligence. So I’ve learned that theres always more to someone’s story than you know, generally, people are probably always doing the best they can.
23. Want to know a secret? One thing people say that gets under my skin is: “Ohh you have Chronic Fatigue Syndrome? I think I have that, I’m always tired and stressed because I never get any sleep.” Chronic Fatigue Syndrome isn’t just being tired. When healthy people are tired, it sucks. I know, I’ve been there too, before I got sick I would live on little sleep, so I remember that feeling. CFS isn’t that. When you’re just tired because you don’t have time to sleep, once you do sleep, you’ll feel better. With CFS, I can sleep 9-10 hours in a night and still wake up exhausted. And it’s not the same kind of exhaustion. With CFS, I would wake up and try to get up for school, but literally not be able to move my arms and legs for exhaustion. If I did manage to get up, I’d usually end up collapsing on the floor at some point during getting ready and not be able to get up from there. It’s not a lack of sleep, or motivation, it’s a real, concrete health problem.
24. But I love it when people: Ask me how I am! Not because I just want attention, and maybe if people did it all the time it’d get old(idk, it pretty much never happens,) but it’s just really nice. I spend most of my time trying not to talk about fibro because it scares people away, so for someone to ask me about it really means a lot to me.
25. My favorite motto, scripture, quote that gets me through tough times is: "It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all- in which case, you fail by default" ~JKR
26. When someone is diagnosed I’d like to tell them: Do research! Talk to others with chronic illnesses, if you don’t know anyone in person there’s a very big online community for fibromyalgia. And be careful what you read, because it can get very depressing. A lot the stuff I read at first was from the perspective of “You have fibromyalgia, your life is over now, here’s how to deal with it.” But that’s not okay, you can’t live like that. There are plenty of people who believe there is a lot you can do to minimize symptoms, and thats what you need to focus on to get back to living as well as possible. Also, trust your instincts. Doctors, friends who think they’re medical professionals, and everyone else will tell you what treatments are best for fibro, but you need to learn what works for YOU and your body.
27. Something that has surprised me about living with an illness is: How normal symptoms get. It’s weird to me sometimes when I realize other people don’t have to deal with the things that I have to think about constantly. “Wait, fevers are a big deal to you?” “You can eat whole wheat vs white flour whenever you want and not have to worry about how your body will react?” “…you can go through a whole day of being busy and not have to rest up for it and recover, and not even WORRY about being in pain?”
28. The nicest thing someone did for me when I wasn’t feeling well was: Since I don’t have many people in my life to talk to about health, it’s helped a lot since I started Twitter and Tumblr, when I’m feeling bad, it’s nice to have people who understand.
29. I’m involved with HAWMC because: Healthy people shy away from people with any sort of illness, because they don’t know how to react. It’s really not hard, we’re not looking for much, just kindness and someone who cares enough to try to understand.
30. The fact that you read this list makes me feel: Happy! Thank you for taking the time to learn a little about fibro and a little about me! :)