Feeling normal

I have Chronic Fatigue Syndrome and orthostatic intolerance.  CFS is an illness that tends to get worse unless it is diagnosed and you learn to stop trying to live your life the way other people do and start taking care of the illness.  There are people who have it who can lead completely normal lives, and there are those who can’t even get out of bed.  For me, I was diagnosed very late, and so I can’t work anymore.  I can still get out of bed and do quite a few things for myself, so I still count myself lucky.

The symptoms of CFS are common for a lot of other illnesses, making it hard to diagnose.  Exhaustion.  Fibromialgic pain during flare ups.  Inability to recover from exercise.  Feeling ill during pressure changes.  Loss of cognitive function, often called brain fog.  For me, that means planning my day so I don’t do too much at once.  It means living with my parents so they can take care of me.  I try not to commit to much of anything, because I don’t know when the next flare up will be.  I keep track of every ounce of energy, take many pills and try to find things that I can still do while sick, so I don’t feel worthless.  Things like crochet, art and computers have kept me sane.

I had known about NaNoWriMo for years, and have always wanted to do it, but every year there were other very involving projects that I wanted to do more, and I wouldn’t even think about it until just before November or a few days in.  This year I remembered in October, and I thought about it.  There were no other projects that had to get done.  I had a laptop this year, so I could type on my bad days.  And what better thing do to while stuck in bed?  So I signed up, filled out my author info and waited anxiously for November 1st to start.

From the beginning I wanted a finished novel by the 30th, not just 50k, so I would write as much as I could every day.  I had a major flare up throughout all November, so I was spending much more time in bed than I normally do.  What else was there to do but to write like crazy?  I wasn’t always coherent enough to talk, but writing was easier, and planning to edit it later helped me let go.  It’s strange to say, but I think my chronic illness helped me finish my novel.  How else would I have the time?  What else would give me such motivation?  There were days when the illness interfered, of course.  Times when I couldn’t put my thoughts together enough to comprehend letters, or the pain just wouldn’t let me ignore it.  But I wrote more than I needed each day and had planned my count so I could have Saturdays to catch up, and those really terrible days were rare.

I honestly didn’t think it was going to be as easy as it was.  For once I had a complete outline before starting.  I was writing every day.  I had a visual representation of how much work I was putting in, and I was meeting and exceeding those goals.  It was exciting.  Letting go of my internal editor was the best thing that has ever happened to my writing.  It felt like a dam broke and words were spilling out.  After a few days the floods slowed and I had to work to get my daily goals, but it was still so much fun.  Having friends on my buddy list was great, pushing me to exceed what I expected of myself.

I felt more like a normal person that month than I had in years.  When I had flare ups, other people had parents banning computer time or work that demanded overtime.  My problems for once weren’t more or unusual, just different.  Everyone had something that tried to stop them from writing.  And I was still winning. I was still beating the word counts of my friends who were well.  I thought this might be like winning a marathon race, only I had a real document with words in it I could show for it.  Nothing was going to stop me that month.  It was a valuable, wonderful experience, and I’m going to do it again every year.

My advice for other chronically ill aspiring writers is to first, get a laptop.  Shop around, buy online, maybe buy used or get a refurbished netbook like I did.  It isn’t a terribly expensive thing to buy for something that gives you such freedom.  Second, plan for those bad days, they’re going to happen one way or another.  Make sure you have enough leeway built in that it won’t hurt you to stop when you need to.  And even if you don’t have enough leeway, you still need to rest, get better, and don’t feel guilty that you just aren’t going to get that word count today.  Recover first, then push.  Lastly, write something every day.  Even one word will keep you in the habit.

I’ve always wanted to be a writer, but I’ve also always felt like it was something I had to work towards.  Something I could be someday, not now.  NaNoWriMo has taught me how to be a writer now, and I actually feel like one.  Like I can do this.  I feel like a writer who happens to be ill, not an ill person who happens to write.  And I think that’s something everyone can have with NaNoWriMo.