Life Changes with MS
I quietly made a big change in September, and on the advice of my neurologist and with the support of my family, I stopped working full-time. I’ve done this so quietly, even most of my fellow-MS experts here as MultipleSclerosis.net don’t yet know this news. Well of course, if they read my articles then they are hearing it here, too.
At first, I wanted to see how being out of the workforce and being on short-term disability might feel and if it was the right thing to do. Within a month, I knew it was beneficial to my well-being to not feel the push and pull of being at work each day. The ever present fatigue improved, and my mood was definitely better.
To understand why I delayed this for so long you need to know I really like my place of employment; I have worked for a private University, surrounded by smart faculty, engaging students and those of us in the support staff. I have worked there for over 25 years. It is a great work environment, and I was even fortunate to only work full-time 10 months of the year, with a two month (unpaid) break in the summer.
There are still many people in all corners of my life wondering why I left work when I look so good, and continue to do many MS advocacy projects as well as enjoy leisure travel. If you have multiple sclerosis you already understand. For anyone else left wondering, let me share the process of my 7 hour work day (8 hours if you count the one hour unpaid lunch).
The alarm rings at 5:30, and I would roll out of bed. I toss back my pills …. and then I wait. An hour or so later, my body is finally awake and the signals of my errant central nervous system are slowly connecting from my brain to my legs. I take a shower in as cool of water as possible so I don’t overheat my body. Unfortunately on the days I also shampoo my hair, that means I have to use the blow dryer and have again increased my core temperature. It doesn’t take much of a change in temperature to kick off L’hermitte’s, a form of heat sensitivity that degrades the body’s signals. My pace to dress and make the finishing touches to get out the door slow down while my body regulates my temperature and I try to cool down.
Eventually, I can comfortably leave the house and drive to work. The 20 minute sit in the car is just enough to allow my body to forget again that my legs should move when my brain commands, and I slowly make my way out of the driver’s seat and plant my feet on the parking lot pavement. There is a slight incline on the walk to the building, but on some days it might as well be Mt. Everest, because my legs feel the climb. It takes me at least three times longer to walk into the building than the others around me who are rushing to class and work.
Three hours from when I first wake, I am finally at my desk, but not really because just sitting for the next 8 hours isn’t possible. Taking care of 60 faculty members in the largest academic office on campus is no easy task, even though there are two of us. Multi-tasking is the norm of expectations, but as my MS has progressed, I found this exhausting. I am aware how fortunate I was to have a ‘desk job’ and wasn’t working in a place that required standing for much of my work shift, such as teachers, line workers or cashiers. The clock finally reaches the end of the work day, and I face the prospect of climbing down Mt. Everest to my car. Ok, I exaggerate about the steepness of this walk but you get the picture.
If traffic flows well, I arrive home at 5 PM, almost 12 hours after my day started with the early morning alarm ringing. It’s recommended we get 7-8 hours of sleep per night, and if I follow that suggestion, I have a few short hours remaining in the day to do other things. I would spend time working on my laptop, writing and researching MS information. But there’s no physical energy left – the fatigue of moving through the day has pretty much taken all I have. If this is just Monday, I have four more days to pile on this routine. By Friday, I found myself spent. Totally done. The weekend days were used to recover for the coming week and the repeat of this routine again and again. I’ve known I was tired, but continued to power through.
The final Friday I worked, I came home early and slept for 15 hours. If I wasn’t smart enough to figure this out, my body was going to make me stop and listen. I saw my neurologist the following week and immediately went on short-term disability and anticipate changing to long-term disability in January.
Fatigue, the kind brought on by MS, is a disabling condition. It’s hard to explain the exhaustion caused by walking when my brain is aware of each step it has to command my legs to make. Having MS makes movement an activity of its own that requires concentration and effort all the time, creating a form of fatigue that can’t really be understood unless you also experience it in full-force.
It’s fortunate for me, yet often still difficult for others to understand, that I can work for hours writing and researching, as long as I don’t need to move my body. Cognitively I’m still together – I just don’t have the moves anymore that are needed to get me through the work day, five days a week, 10 months long, without doing damage to myself. I miss my coworkers, and I especially miss being around the students. But I don’t miss coming home each evening, with nothing much left to give. And I certainly don’t miss the push every weekday morning to get ready to be out the door on time; most days I dress at my own pace and that might not even be until noon.
So many people wonder why when we look so good do we have to make major changes to our lives to accommodate our MS. I hope this explanation of this major change for me helps someone asking that question to better understand. As we are taught from early childhood on, looks aren’t everything.