Day 91: Beating Boredom and Blues: A Primer for the Chronically Ill

My Favorite Four Days by Kathy Tagudin

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...

24-27  by Kathy Tagudin

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

Comments

[Kathy Sheridan]

My brother had this tick borne disease when he was on the Cape. http://www.aldf.com/Babesiosis.shtml He was so sick and felt crazy because he was depressed, no energy, hurting. A doctor there figured it out because others had gotten it there as well...he was lucky, many go undiagnosed for years...his was 5 months....make sure you have been checked for it!
I love your sense of humor and check in on your daily. Come to Chicago!...well wait until it is warmer :) Kathy

[Kathy Tagudin]

Thanks, Kathy. Yea...ticks can harbor tons of diseases and bacteria. I'm being tested for all of them.

[Lucy Medford]

Thank you, Kathy, for doing this! I wish I had discovered it a long time ago. I was diagnosed with Lyme's several years ago. Your symptoms sound way worse than mine, but similar. Sometimes I feel like I'm crazy because it seems like in the medical world this disease doesn't exist and they don't know what to do for it. The (alternative) dr I saw said I've probably had it since age 16. I spent 2 years doing alternative healing and it has made a big difference, but now I'm seeing new things....the wierd rash comment you made rang true for me. I'm going to read your blog as you inspire me.

[Kathy Tagudin]

Thanks for reading, Lucy. Glad it's making a difference. I'm sure you probably did, but when you were diagnosed did you go to a Lyme Literate Doctor???? If not, I would definitely recommend it. Another thing that has been really interesting to learn is a lot of "symptoms" people experience aren't necessarily caused by the disease itself, but by co-infections (babesiosis, ehrlichiosis, bartonella, mycoplasma, STARI, tularemia). So, depending what else is going on in your body (or was at the time), your symptoms could definitely vary. If you need any support, let me know.

FYI: Whether I have Lyme or something else, it seems like eating a yeast free diet is really making a difference for me. Perhaps it could for you too?

[AnneMarie]

I appreciate reading your posts, my friend just introduced me to it. I was a little disheartened when I read another entry in which you asked "is fibromyalgia even real?" As someone with it, I can assure you it is. Your blog is helping me a lot, and it helps me to see others share the same feelings as I do. I haven't gotten through all of your blog posts yet. I just felt the need to say something because I deal with people thinking fibromyalgia isn't real everyday, and it's maddening.

[KTag]

Thanks AnnMarie...I appreciate your feedback and sorry you felt slighted and can understand why.

My questioning of Fibromyalgia is not whether people are suffering are not. I am going to clarify that in my post so people get it.

I have no doubt the pain you are in and I am is TOTALLY real. I just wonder if Fibromyalgia the symptom of bigger things or the true problem.

I don't know how much you have yet, but I am suspected of having Lyme. Which noone believes either. So I get the total annoyance and the pain of it.

Thank you for reading and for your honest feedback. My goal is to further our conversation...not hinder it. So again, please accept my apology if you felt dismissed or slighted. That was not at ALL the intention.