Watch me pull a blog post out of my hat.
I have been away for a while. Away from the blog, away from my friends, away — to a great degree — from being an active participant in my life.
It’s hard to come back. Hard to explain what was going on, hard to reconnect, hard to make the multiple daily decisions to step out and not retreat.
Many days over the past six months, I have not wanted to come back. Not to any of it.
Other times, it seems like things are on an upward trajectory, like I’m making progress, like the end of this is in sight. I have not determined why this happens, or how; I am glad when I feel better, and devastated when I slip back down again.
I have decided to keep making the attempt, though. I’ve been working on reminding myself of all the things I love, all the people I miss, all the reasons that life is worth truly living. Trying to see the blue sky reflected in the puddle that is left from all this rain.
So here I am.
“sky II” by Cammer’s Camera / CC BY
Since I was diagnosed with MS, I’ve noticed that I’m always waiting for the other shoe to drop.
I question myself constantly:
- Would anyone have tripped and fallen there? (That oldie-but-goodie!)
- Could [insert every possible health condition here] be a new MS symptom?
- Am I having a flare-up of an old symptom?
- Is this symptom a sign that I am going to get sick in the next day or two?
- Do I have an infection I don’t even know about yet?
Those paranoid questions lead to other questions, which fill my brain all the time. Here are some of today’s:
- Am I always going to be this tired?
- Should I take the fatigue medication (usually a stimulant) and trade the fatigue for some really unwanted side effects?
- Will I ever be able to work consistently without having to take so many days off?
- Will I ever stop feeling guilty about calling in sick? It’s not like I’m doing anything but lying in bed, but will I always feel that I’m not living up to work expectations?
- Will this disease progress? If so, how quickly?
- Are my cognitive skills declining due to brain lesions, or am I just getting old?
- Is going out on Social Security Disability in my future? How do you even get it?
- Am I going to need a walker?
- Should I move to a one-story house?
- Will Quinland get MS? (There is a possible genetic component.)
And so it goes. The real question is, why am I sitting here worrying about all this when there is so much good in my life? Am I a bad or ungrateful person? Couldn’t I put my brainpower to better use?
Yes, I could definitely find better things to think about. But the darn questions about MS are so insidious because the causes and effects of the disease, the symptoms and the treatments, are all so uncertain.
It really makes you wonder.
“paranoia” by Emily Cline / CC BY
Everyone knows that pink ribbons represent breast cancer awareness. But did you know the color of MS awareness? Yes, it’s orange! (A color, I should add, that it shares with leukemia and kidney cancer, as well.)
At Walk MS, there is a sea of orange-clad people walking the bridges of downtown Portland. Lately, the orange has been spiced up with the addition of a bright lime green, which I love.
Hopefully, someday soon, those orange ribbons will be as ubiquitous as the pink ones, and MS research will really take off. And hopefully, in the very near future, cures will be found, and neither of these ribbons will be needed.