Coping with Disability

Coping with Disability
By Lisa Macafee

​Things have become a little weird this summer.  I’ve had a fibromyalgia flare since mid-June that has gotten better and worse, but has generally made itself part of my life.  I’m trying to be chill and accept what life throws at me with good temper, but (not gonna lie), it’s been hard to be gracious.
 
I am very lucky that I have amazing people in my life who make this not as bad as it could be.  My husband, Ryan, has been THE BEST.  He’s encouraged me to use a wheelchair when I’m too weak to use the walker or when using the walker would wipe me out, and happily pushes me around.  A bonus is that one kid almost always sits in my lap when I’m in the wheelchair, and that takes the sting out of it.
 
I don’t like it though. 
 
I don’t like that I’m physically used up for the day after taking a shower and making breakfast. 
 
The really annoying part is that I can do more, but if I do, I’m borrowing spoons from the future.  If you haven’t read The Spoon Theory by Christine Miserandino, she does a great job of describing what it’s like to have a limited amount of actionable items (spoons) to be able to do each day and how we need to make choices that others would never think about because they have more spoons than they typically need in a day.
 
We are all on Summer break (I’m the only one working part-time), and if I want to participate in activities with my kids, I need to take a walker or wheelchair.  If I don’t take a mobility aid, the amount of standing and walking required for even a small outing takes the energy out of me and I’ll need to spend the next day laying in bed.  Which I’ve done a lot of, because I keep thinking it will be fine and doing more than I should.
 
The silver lining is that I’ve been reading a lot of novels and I’m way ahead in my PsyD class, so that when I start my new job (!) at Santa Ana College in one more week, I have some grace time for my assignments in school.  Being able to work on my PsyD at my own pace (while sitting) makes me feel competent.  I have a hard time not being productive, depression tends to kick in, so my PsyD program and working remotely have been good for me.
 
Fibromyalgia flares are exacerbated by stress.  Basically, something happened that put our fight or flight response into overdrive and we can’t shut it off, and our bodies run themselves down.  Too much hypervigilance = bone weary fatigue, muscle pain, headaches, and other (not) funs.
 
I’ve been coordinating the development of LGBTQIA+ stuff at Fullerton College and just navigating that emotionally charged workplace (remotely) has left me wiped out for days. 
 
Physical, emotional, or intellectual stress takes me down.
 
Did I mention that I’m starting a new job?  On campus?  In a week, I’ll be working for Fullerton College remotely for half the week and Santa Ana College (SAC) on campus as their career center coordinator for half the week. 
 
I’ll be working a full-time schedule again and my job at SAC will be something I’ve never done before… like last semester, the semester before that, and the semester before that. 
 
I like learning new things, but I’m not sure I can handle the stress of driving to SAC (about 45 minutes each way), walking across campus, and facing a whole new group of people and job responsibilities.
 
I want to be a good parent to my babies.  I want to be a good partner to my spouse.  I want to enrich myself with the PsyD, and be competent, and do good things at the colleges I work for. 
 
I want to be independent and I worry at how my mobility aids will be perceived by people at work.  I know that it’s illegal to discriminate against people for having a disability, but that doesn’t mean people don’t do it.  I don’t know what this means for me, and I guess the bottom line is that I find this scary.
 
Let’s keep on keeping on.