How I’m Managing the Challenges of Study With MS Fatigue
Applied neuroscience I can manage, but what about stress and concentration?
Just like a surgeon’s prize hand or a ballerina’s plié, my mind has been my most valued asset. That’s been true all my life, through realizing my passion for science, achieving my undergraduate degree in biomedical science, and even keeping myself sane during the dark days of paralysis following my diagnosis with aggressive relapsing-remitting multiple sclerosis (RRMS).
Undoubtedly, the one thing that’s been especially challenging in the days since is managing fatigue. It was almost as though my cognition reduced as my physical ability was reclaimed.
This was a bitter pill to swallow. I felt like a lesser version of who I used to be. Especially before my disease-modifying treatment, alemtuzumab (also known as Lemtrada), when I required steroids to treat my frequent relapses.
Each time the clouds of fatigue were lifted, I was reminded of what it was like to feel “normal” and be able to think properly. And each time I could feel it fading away again, it was just another punch in the gut.
Despite this, I’ve vowed never to let MS or its co-conspirator, fatigue, stop me from doing things in life. As such, that’s why I’m following my passion and studying for a master’s degree in applied neuroscience. I knew it would be a challenge, but I wasn’t aware just how much of a challenge it would be. It’s not the content that I’m finding most difficult, but rather my studies are being challenged in different ways.
As with every aspect of life since my diagnosis, I knew I would have to adapt my approach to studying. The trial and error that came with this meant my progress in understanding the course content has been slow and steady.
This, I was ready for. I knew I wouldn’t learn as I did during undergraduate studies 10 years ago. Instead of being able to read pages and pages of scientific papers in one sitting, my optic neuritis and limited concentration due to fatigue require me to spread them out, taking constant breaks.
What I wasn’t ready for, however, were the challenges outside of the content and the studying. The mundane things in life take up so much more energy than they used to.
In terms of my degree, I’m finding it’s things like the confusion of points of contact for different queries as the university keeps changing them, or the impact of a university administrative error causing me to lose 10 days of one of my modules. These things are waging a war between my vow to myself and the decision about whether the additional stress it’s causing is worth it.
The jury is out on whether I’ll end up completing my degree due to these challenges, but the battle is ongoing.
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About the Author
Gary Pardue
Beth, you and I were hit at about the same time with this incredible issue. I was diagnosed with Primary Progressive in December of 2015. I had been suffering issues with my back and my left leg along with walking issues lead me to a neurologist who thought that had herniated discs in my lower back and I had surgery but I never got any better. A final MRI found the issue. I started my Anti-MS journey with Rebif and it wasn't helping. I was waiting on the new drug Ocrevus to hit the market. I was the plant Manager of a Rock Quarry here in Northwest Alabama and had worked for them for 26 years. They were a self-insured company so they eventually paid all the bill but they had Blue Cross Blue Shield running their health care. They came in just a few days before my 27 year hire date and told me that they didn't need me any longer. Lots of issues they said but they will never make me believe that it wasn't anything but the cost that they were about to experience. They said here's a small severance package, you can come back in a week and clean out your office, no health insurance, no Long-Term Disability Insurance that I had paid for 25 years. I got myself an attorney and he filed an ADA Lawsuit against them. They came back to the table with several offers and we finally settled on more $$$ + the LTD that I had paid for. I really enjoyed my work. I had actually worked in a quarry for 31 years when all this happened. I was 49 at the time. My daughter was a junior in high school and she was devastated. She was a great student and wound up being the Valedictorian of her class. She got all kinds of scholarships and he college was paid for. She graduated last May with her Masters in Accounting and is about to start a job with an Accounting Firm in Memphis. I though about trying to go to work somewhere else. There is another quarry here locally but it was in the process of being sold and it probably wouldn't have worked out. I really miss being able to get out and do the things I enjoy like hunting, fishing, and just spending time in the woods. I'm 56 now and the likely hood of me having to use a wheel chair is growing. I stay as active as I can but I get tired really quickly some times then I'm done for the day. If you can go back and get your degree and its easy on you physically then go for it. Be strong and don't give up! Sorry for my rambling but sometimes I just have to vent a little.......