A speeding train with tiny people trying to keep up.

No Breaks Allowed: MS Burnout

Have you ever been so consumed by work, school, or some other project that after a while, you just can’t go on because you just feel so “burned out”? You can’t concentrate anymore, the work you are doing no longer satisfies you, you’re not at all motivated, you feel exhausted, and despite you trying to push through it, you just don’t seem to be nearly as productive as you once were? Well, maybe all you need is a little break. A moment to step aside from whatever has left you feeling burned out so that you can “recharge your batteries” and jump back in when you’re feeling ready to take care of business. It may not be that simple, but it’s usually possible, right? You can probably take a little vacation from work, a semester off from school, or spend the week doing something other than writing that novel you’ve been working on for 5 years. But when you have a chronic illness like multiple sclerosis (MS), there are no breaks!

Living with MS is a full-time job

I feel like living with my MS is a full-time job, but not an 8-hour-a-day full-time job; I’m talking a 24-hour-a-day full-time job with no days off, not even for holidays! Every day, I have to deal with symptoms like fatigue, dizziness, and balance problems (to name just a few examples). Every day. From the moment I wake up in the morning, I’m on the clock, and I don’t even get to punch out at bedtime thanks to insomnia and other nightly symptoms all trying to remind me that, “Hey, Matt, don’t forget, you have MS, remember?” It’s like I’m an on-call doctor; I never know when “the job” is going to call me into work. MS is a super-full-time job.

Phone calls, appointments, and labs

Many of my days are also consumed by phone calls to my neurologist’s office, my insurance, the specialty pharmacy or the co-pay assistance people (since I have to renew that every 6 months for some reason). I also spend a lot of time driving around to doctor’s appointments, picking up prescriptions, and doing monthly labs which probably wouldn’t be so bad if I didn’t have to do it all on top of all the obligations I have outside my life with MS which can all be exhausting themselves. MS seems to provide me with a never-ending to-do list, and sometimes, it’s just really hard to keep up!

I'm just so burned out

Even when I’m just sitting there doing nothing instead of running around taking care of medical stuff, I’m still thinking about my “full-time job”. I honestly can’t remember the last time MS wasn’t somehow on my mind in some way, shape, or form. Even when I’m totally lost in a good movie, I’m still anchored to my reality by the subtle ringing of tinnitus, the spastic cramps in my legs, and/or the random muscle spasms that MS causes me to experience. Even though these have become “little things” to me in my life with MS, things that I rarely complain to people about, over time they have slowly worn me down just like a stream of water has slowly carved out the Grand Canyon. Again, I can usually power through it and take care of business, but lately? I’m just so tired. I’m not talking about fatigue or a lack of sleep, I mean I’m just so burned out! I need a break! But MS is chronic, which kind of means that no breaks are allowed…

I don't know how to find that healthy balance

Now, here’s the thing: I know that this mostly speaks to me and how I manage my life - my apparent lack of hobbies unrelated to medicine, how I allocate my time, etc. I’m sure that there are so many small changes that I can make to my life that might really help take my mind off MS for a bit. Changes that would probably help relieve the feeling of “MS burnout” that I’ve been experiencing so often lately that has been making it so much more difficult for me to keep pushing forward. But what I realized was, I don’t know how to do that… I don’t know how to find that healthy balance of non-MS-related activities and MS-related activities, and I can’t be the only one! It’s not like doctors teach us about this after we are diagnosed with MS.

An overlooked aspect of life with MS

But despite how common of an issue this MS burnout thing must be, I have never heard anyone talk about it! I’ve never read any sort of advice on how to avoid burnout or how to deal with it in a healthy manner! It seems to me that someone should talk to people about this because it seems like such an important aspect of living with a chronic disease! Maybe I just need to look around the internet a little more, maybe others have talked about this in great depth, and maybe the solution is really simple? Well, I really hope so, but I’ll have to look into it some other time because right now? My alarm that reminds me when to take my daily medicine is going off, and after I finish my pharmaceutical cocktail, I have to fill out some paperwork for my health insurance. OK, deep breath, here we go, let’s do this. I think I can, I think I can, I think I can...

Do you ever feel burned out due to your MS? If so, how do you deal with it? Have you found a way to prevent feeling burned out? Share your experience and advice in the comments below!

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