Four days a month. That's how often I feel "healthy." Not symptom free, but vital--the kind of feeling you get when you've just recovered from the flu and want to leave the house.
When this happens, I get dressed, go to movies, do art, work on my Etsy stuff, and question. "Maybe I'm getting better," I'll say, sometimes out loud. "Maybe I'm not really sick."
Those four days are magical. I love them. Although I wish they would multiply, I'm not complaining. Many people never get a break from illness. Still, it's not easy: being home, not fully functioning , and looking at a schedule filled with blood work, doctor's appointments, strange herbs, etc. Which leads me to the other days...
The dreaded 24-27.
Those days...are not as good. Sometimes, they're filled with intense pain that require hot baths at 3:00am. Other times, they're marred by insomnia and depression. Mostly, they're just blah days filled with with randomness: weird aches, new rashes, hot/cold/tingling/stinging/burning sensations, stomach pain, strange food, fatigue, and this awful little annoying ache in my right-hand pointer finger.
To keep sane, I do a lot of things. Which brings me to why I am writing...to discuss how I cope while I wait for a diagnosis. Below is my list (it's not complete yet, but it's a start). If you have anything to add, let me know. As with everything, it's all a work in progress.
Beating Boredom and Blues: A Primer for the Newly Diagnosed or Chronically Ill
1. Discover the Internets -- Need a break from researching symptoms or lurking on medical message boards? The web's got tons of cool sites to keep your mind busy and your attention occupied.
For fun, I like: Mr. Picasso Head, All About Pets, BeFunky, JibJab, Uncyclopedia, Games.com
For distraction, try: Hulu, TED, PostSecret, YouTube, Livemocha, Movieclips.com, The Onion
2. Set Daily Goals -- Are you homebound? Do you work? Are you struggling just to get out of bed? Whatever boat you're in, I have one suggestion: Accomplish one thing daily. The goal doesn't need to be big. Sometimes mine is as small as washing my hair or getting some sunshine. Stretch yourself--don't push yourself. Go on. You can do it. It might not make you feel better, but it will make you feel more human.
3. Be Your Own Best Friend -- I know. I get it. It sucks when people: say dumb things, don't understand, disappear, or genuinely disregard what you are dealing with when you are suffering with illness. The truth? They are not going to understand--at least not naturally. So, your job is to: a) educate them b) move on or c) find people who will. Period. This means YOU (yes, sick you) are going to have to do some things you are not confortable with. Things like: Asking for support (have you told them what you need from them?); Reaching out to strangers (in waiting rooms, online, through friends of friends, through support groups); Demanding that you're heard (sometimes to very intimidating people in white coats who are much larger/stronger/smarter than you). I know. It's not fair. I know. You shouldn't have to do it. Regardless, you need an advocate right now. Can you think of anyone who's more qualified?
4. Get a Hobby -- What did you love to do as a child? Bake? Sew? Knit? Paint? If you're able, why not go back to it now? If it's too hard, maybe there's something similar you can enjoy? For example, I'm not always well enough to make art, but I can look through craft magazines and pull out projects I might like to do in the future. Find ways to bring creativity back into your life. Inspiration will follow.
5. Share the Journey -- Call it therapy, call it writing, call it journaling, call it whatever you want. There is something incredibly therapeutic about documenting your journey. Websites like Blogger, Wordpress, and LiveJournal are great ways to get your feet wet. For something more old school (or more private), consider a blank or handcrafted journal.
6. Get a Sense of Humor -- I know. There's nothing funny about what you're going through. Still, if you look really, really hard...maybe there actually is. For example: You know you're sick when you get a glass of water, consider putting ice in it, then decide it's too much effort (happened to me this morning). Sad?? Yes. Funny? Yes, too. If you can't find your sense of humor, borrow or steal one. As they say, laughter really is the best medicine.
Altered Today: Writing for Others, Being Useful Instead of Mopey