Learning to adapt is key to managing any chronic illness. Our guest blogger, Anne P., shares the hurdles of life with multiple sclerosis in today’s post.
I have multiple sclerosis and many “MSers”, myself included, get really frustrated by the fact that our disease is often invisible. Especially in the early stages of MS, there are so many little things that are becoming a pain in the butt, yet still mild enough that we can pretty easily compensate.
For example, if you’re female you might find walking in high heels a lot more challenging than usual, so you start wearing flats more frequently. Or the effort to fix your long hair every day gets too fatiguing so you start to wear your hair shorter, making it easier to manage. Everybody else just thinks you’re just trying to update your look – if they give it any thought at all.
I’ve got the perfect job for an MSer, I really do. Not only do I love what I do, but the group of folk I work with (and for) are terrific! My employer is in another state and payroll is done by direct deposit. I’ve actually met probably less than 25% of the entire company in person, and there aren’t even 50 people total.
First of all, I get to work from home. No daily commute in rush hour traffic. No “normal” business hours. No face-to-face interaction, beyond Skype or NetMeeting, or any other internet-based camera and audio. When a meeting is scheduled for which I have to be on camera, I only have to wash my hair, put on a little make-up, and wear a nice top and jewelry. From the waist down, I’m invisible to the other attendees, and they can’t tell I’m in my pajama bottoms or stretchy pants.
I’m really good at editing and proofing documents and am called upon frequently to do so. Nobody knows when my right hand doesn’t want to behave and I’m using one hand to type. When my sleep pattern goes off the rails, which it does more frequently than I care for, it’s fine if I do some work at 2:30 in the morning. As long as my work task is delivered on time, that’s all anyone cares about. When I have to take a nap for ninety minutes to an hour, no one even knows. Interestingly, I seem to be able to not crap out of a scheduled phone call or meeting, but might be dead asleep within 15 minutes of its conclusion. Likewise, if I have to be on a conference call at say 8:00 in the morning, I can set my alarm for 7:45, get a cup of coffee, my computer up and running, and be dialed in to the conference line right on time.
There used to be a time when my illness was completely invisible. I drove to and from work every day and could consistently record 55-65 hours a week. But after 19 years with MS, I’ve slowed down and just don’t have the mental and physical bandwidth to do that anymore. Sometimes that reality ticks me off but I have to admit something. Nowadays it’s a comfort knowing that when I park in a handicapped parking space, nobody is going to accuse me of faking anymore.
Thank you, Anne, for sharing your inspiring story!
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!