ME/CFS Strikes Back

2:56 am. My alarm is set to go off in 3 hours, but here I am wide awake. Why can't I sleep? Insomnia. It may seem at odds with something called "Chronic Fatigue Syndrome" and this is one of the many reasons some people get the impression that those of us with M.E. are making it up, or hypochondriac, or hey, maybe you are cured! All better! Nope.

And having insomnia does not mean that I can finally tackle cleaning out the pantry or folding the mountain of laundry on the closet floor. Yes, I am awake, however I have no energy to move, my ears are ringing LOUDLY, my arms feel like they went twelve rounds with (insert the name of a professional MMA or boxing champ of your choice) and my knees and hips feel as though they have been hobbled. Typing this blog post is seriously hard as my hands are cramped with shooting pain across the tops.

But I had to do something quiet so that I didn't wake the fam. It sucks being trapped in your body when you have things to do, even things you want to do (make some kick-a$$ art) but cannot.

Normally, I would just take something to help me sleep. It would leave me knocked out for a good chunk of my Sunday. That is not an option because tomorrow (okay, later today) I have a truly spiritual event planned. I am going to see a Frida Kahlo exhibit. I don't care if I have to rent a wheelchair or get carried on a stretcher, I WILL see the work of my most favorite of all-time artist.

Let's get to the point here because I am not sure how much more my hands can take.

What is the cause of tonight's ME/CFS extravaganza? This morning I paid some bills, ordered my tickets to Frida and took it easy for a couple of hours. I was feeling pretty well so I started working on my website. It's a website mostly for my art and my art is the one thing I can become hyper-focused on. So I did that for about six hours or so. Then I showered and went out to dinner with The Man and then did some Christmas shopping for the kids.

I didn't think too much of it and pushed through even though my hands were aching. Until now, when I am wide awake and suffering. Then I started thinking of all of the walking and standing I will do at the art museum, and the emotional stress (though positive) involved, not to mention the lengthy car ride to get there and back.

Then my brain goes there. After Sunday is Monday and that means back to work standing and walking and managing teenagers (aka herding cats) and a staff meeting after school that will have me pulling up in my driveway 11.5-12 hours after I left it in the morning.

It was about this time last year when I had to take a medical leave of absence from work. I was out from December the 10th to January 28th. Teaching is one of those jobs where it is easier to go to work than to plan a day off. You have to have excellently planned lessons for the day with all copies made and detailed instructions for your substitute (oh PLEASE let there be a sub so your co-workers don't need to cover you). However, when you struggle to get out of bed and almost immediately have to crawl back in, what else can you do?

Although over-all, I feel better than I did a year ago, I still have to be careful managing my stress levels, physical activities, etc. My doctor has brought up taking time off work again recently but I really, really, really, really don't want to do that.

This blog post has to end now because my pain is pretty high. I will definitely check in after the Frida exhibit. <3