My 30 Things: Invisible Illness Week

So, I've really been on top of things lately. It's Invisible Illness Awareness Week and I almost missed it. (Thanks, Sarah!) Normally I see it all over Facebook, so I don't know what happened this year.  

 

Anyway, with a day left in the official week, I wanted to share my two cents (that was a lot harder to answer than I thought it would be) on life with chronic illness. 

 

 

30 Things About My Invisible Illness You Never Wanted to Know

 

1. The illness I live with is: The short version is Fibromyalgia and Chronic Fatigue Syndrome. You can read about what I actually have here and here.
2. I was diagnosed with it in: January 2011
3. But I had symptoms since: Severely fall 2010, mildly all my life, particularly once I hit 12 years old.
4. The biggest adjustment I’ve had to make is: attempting to operate at half my capability.
5. Most people assume: what I live with is really not that bad, especially if you're basing your view of me off of pictures on my blog or seeing me out somewhere. "Not that bad" is the farthest you could possibly get from the truth. It's called an "invisible" illness for a reason.
6. The hardest part about mornings are: Well, when I'm awake for them... How I feel when I wake up. Even if I've had 12 hours of sleep, I feel like I've been run over by a truck, or, as I often like to describe it, like Loki in the Avengers after the Hulk grabs him by the feet and bashes him back and forth against the ground. Or, sometimes I feel like I've been running all. night. long. Regardless of the comparison, I'm also vibrating, for lack of a better description, sore and stiff everywhere, and I have to lay there for at least half an hour before I get up. So short version of the hardest part about mornings? Waking up to how I'm feeling.
7. My favorite medical TV show is: I don't really watch medical TV shows, but I do love MASH.
8. A gadget I couldn’t live without is: my laptop. That's how I get anything done.
9. The hardest part about nights are: Again, when I'm awake for them (which is more often than mornings), saying goodnight to Daniel and going back in the family room to have "my day." And the guilt that goes with that. Often I've only been up for a few hours when he has to go to bed, like a normal person, and then I'm often up until he gets up. I know it's not my fault, but nothing about my illness makes me feel more guilty than my reversed sleep cycle.
10. Each day I take __ pills & vitamins. Currently 2. I know, rare for someone like me. It's been a process over the past many months especially, and I used to be on a lot more.
11. Regarding alternative treatments I: have finally reached the point that I am all about alternative treatments. I would be happy never taking another prescription. You can read more about my beginnings in the world of alternative medicine here. The short version is that I think alternative medicine is a great option for anyone with a chronic illness--when you find someone who actually knows what they're doing.
12. If I had to choose between an invisible illness or visible I would choose: probably invisible. As much as I want people to understand, I do like to get dressed up, go out to eat with Daniel or whatever, and let it look to strangers like everything's okay. Even though I know better.
13. Regarding working and career: I guarantee you if I were healthy, I would be working outside of my home right now. I have a college degree, I have the skills. And my body robbed me of my ability to do anything large-scale with those.
14. People would be surprised to know: how devastated I am on a daily basis by my health problems and how they envelop every act and decision every hour of every day. You just can't know until you've known it.
15. The hardest thing to accept about my new reality has been: that I will always be this way. I still haven't accepted it. And now that I've found many more options for treatment, I really don't think I should be accepting it.
16. Something I never thought I could do with my illness that I did was: start two small businesses. I now have two Etsy shops (here and here!) both of which I adore. They are just as valuable as a creative outlet and something to help keep my mind off of my body, if for nothing else.
17. The commercials about my illness: are laughable. Ohh yes, my fibromyalgia pain was so bad, I just knead my fingers into my shoulder to help. Then I went on this pill and I'm thriving now! Absolutely pathetic.
18. Something I really miss doing since I was diagnosed is: thinking and communicating clearly. I was pretty known for my articulation. Thanks, fibro fog.
19. It was really hard to have to give up: dreaming. I remember my dreams and the thrill of them before I realized just how much a chronic illness would take from me. I'm getting to the point now that I really think I can dream again though, though at this point not without pain and still being held back. For now I always have my health problems weighing me down. I have to believe there will be a time that it's not that way anymore.
20. A new hobby I have taken up since my diagnosis is: I have a few actually: jewelry making, blogging, and blog design. As cloudy and limited as I am, I can't help being creative. Jewelry making was a lifesaver in the beginning, and now I've added two more hobbies. I don't know what I'd do without these outlets.
21. If I could have one day of feeling normal again I would: get up at the crack of dawn, make breakfast with Daniel, and go out and do stuff with him all day long. Because you healthy people can go out shopping and eating out all day, right?
22. My illness has taught me: how precious health is and how common invisible illnesses are. Whenever I see a healthy person online complain about something mundane or rattle off the things they did that day like it's nothing, I hope they realize just how amazing it is what their bodies are capable of doing, from bouncing right back after a cold, to doing the work of a housewife.
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, are you feeling better now?" I hear that all the time. And so does my husband about me. No, just because I'm here, decent looking, doesn't mean I'm better. I don't really get better in the terribly ingrained way we can only process as healthy humans. I'm present, feeling awful, or absent, feeling awful. (Though honestly, I often feel less awful when I'm absent.) One thing that doctors do that gets under my skin is after I tell them about the alternative treatments I've started--and how they're helping--they proceed to offer me a prescription anyway. Like, did you not hear what I just said??
24. But I love it when people: say "I totally understand" when I have to cancel on them or say no to something and don't get upset. Or when people tell me to let them know if I ever need anything at all and that they want to help in any way. Or when people ask genuine questions about my health, instead of just ignoring the issue. All of those are rare.
25. My favorite motto, scripture, quote that gets me through tough times is: "My healer will see me through" from "God Who Answers Prayer" and “He brought them out of darkness and the deepest gloom and broke away their chains. Let them give thanks to the Lord for His unfailing love and His wonderful deeds for men, for He breaks down gates of bronze and cuts through bars of iron” (Psalm 107:14-16).
26. When someone is diagnosed I’d like to tell them: there is hope. You will probably go through a time where you feel absolutely hopeless and that your life is over, but it's not, and there are options to make your life better.
27. Something that has surprised me about living with an illness is: how ignorant the average doctor and average person are about what's really wrong in the case of a chronic illness and about treatment options. Think about it: if your body is malfunctioning, popping a pill that eases the symptoms but masks the underlying problem isn't really going to help in the long run is it? You're just going to get worse as your body continues to malfunction and break down. Yet "popping a pill" is most doctors' solution--and the only option most people are aware of.
28. The nicest thing someone did for me when I wasn’t feeling well was: Shortly after I was diagnosed, one of my friends came over to visit briefly and cleaned my bathtub for me, no hesitation, just because she knew I needed to do it and couldn't. That meant a lot. (Considering my poor memory remembers it, now three years later, it clearly did mean a lot.) Also, when a lady at church told me flat out if I ever needed anything at all to call her--and clearly meant it. Just hearing that meant enough to bring me to tears and was something I had been needing to hear for a good couple of years.
29. I’m involved with Invisible Illness Week because: invisibility does not necessitate nonexistence. But we humans are sight-oriented, and how else do we sick people expect healthy people to have any idea what we're dealing with if we don't try to tell them? I can't make you listen, but I can do my best to supply you with plenty to listen to if you're willing.
30. The fact that you read this list makes me feel: loved. And that you care enough to read through this and attempt to understand what you probably will never experientially understand.