Is Fatigue Keeping Me From Being My Best?
Fatigue is probably one of the most common symptoms experienced by people living with Multiple Sclerosis (MS). Whether it's fatigue from not sleeping well at night or fatigue caused directly by MS (lassitude), it can be extremely debilitating. Obviously, not everyone experiences fatigue the same; just like pain, it's ultimately subjective to the individual. That said, there is definitely a broad spectrum of “fatigue severity” out there in the MS community. For example, looking at my own experience with this disease, my fatigue (while it felt horrible at the time) was definitely nowhere near as bad seven years ago as it is today.
You can't compare
Because of its subjective nature, I would never venture to compare the severity of my fatigue (as I experience it) to the severity of someone else's fatigue (as they experience it), just like I would never say my pain is worse than someone else's. However, I can't deny that fatigue definitely prevents some people from doing as much as other people with MS can. This is what I mean when I say it can be extremely debilitating for some people but maybe not as much for others. I suppose that could offer some means of objective measurement, but I'm really not sure, nor does it matter.
Is fatigue the largest obstacle in my life?
Today, I'm not going to talk about what fatigue is. There is already a great abundance of articles online that do just that; describe what fatigue is, what causes it, how to manage it, and how it feels. Today, I want to talk about something slightly different that crossed my mind the other day. In the grand endeavor of my life (to conquer my MS and live a healthy life), is fatigue actually the main antagonist? Is fatigue the largest obstacle in my way of becoming the best version of me possible? I'm not talking about morally, I'm talking about physically and mentally.
When I was first diagnosed
When I was first diagnosed with MS, I remember always hearing that “MS tries to keep people from moving” and that the main goal of someone newly diagnosed with this disease should be to not let it stop them from moving. From living life. I really took this idea to heart; I would actually say that because of my MS diagnosis, I became way more active then I had been before. I was now always going on hikes with friends, going on day trips to Big Bear (a town in the San Bernardino Mountains here in Southern California), exercising, playing puzzle games to try to keep my mind sharp, etc. I never said no to any invitation sent my way. I felt invincible! “I might have MS, but MS does not have me!” I wasn't going to let MS dictate what I could and couldn't do. But over the years, MS did more and more damage to my central nervous system (CNS), and my fatigue became more and more of a factor in my life. Other symptoms that MS brought about started to slowly become more difficult to manage because of the sheer weight of my fatigue.
I was losing certain abilities
So, I slowly started to become less active; going on a hike or meeting up with friends for lunch might have sounded fun, but I just could not work up the energy to get myself to go. When I did try to push myself past my fatigue, I often would experience a flare of symptoms that (if didn't stop me in my tracks at the moment) would take me down the next day. Because I was less active, I started losing physical strength. My stamina decreased, and like they always said in school, “if you don't use it you lose it.” Because of my growing fatigue, I wasn't doing any of the things that I used to do, and so they slowly became more difficult, especially when my extremely active disease was constantly trying to pile new symptoms on top of what I was already dealing with. "If you don't use it, you lose it." I was losing my ability to do certain things, and eventually, as my disease progressed, not being able to go on a hike turned into not being able to walk up and down stairs. I didn't use it, so I lost it.
Exercise and physical therapy
This is the whole point of “exercise,” and I don't just mean physical exercise like riding a bike or lifting weights. When it comes to treating a chronic illness like MS, "exercise" really means doing anything that will help you maintain an ability to do something. Think of balance exercises. A physical therapist may have you practice standing on one leg. That's an exercise that aims to maintain and improve your ability to move about the world without constantly falling on your face. There are hand exercises to help maintain, rebuild, or improve your dexterity and fine motor skills. Visual exercises to help with symptoms like nystagmus or oscillopsia. Pretty much every problem that MS can cause has some sort of exercise to help mitigate the impact of it on your life. I'm not saying that any of these exercises can restore any of your function back to 100%, but if you can only do something 40% as well as you used to be able to, wouldn't working to be able to do it 75% or even 50% be well worth it? Of course! Better is better!
What's stopping me?
This is what made me wonder, "What is the best version of me that I can possibly achieve?" and “What's stopping me from achieving that? From being my best? Being as close to 100% as possible?" Of course, the first thing I thought of (which is pretty much what I had believed for years because I never really put much thought into it) was that it was simply out of my hands; MS did damage to my brain and what's done is done. “It’s the course of the disease,” as I’ve been told by multiple neurologists. But when I sat down to really think about this the other day, I realized, at the center of all the reasons I don't do more to improve myself was fatigue. I thought about all my symptoms, and I wrote them all down on a sheet of paper. Next to them, I wrote down whether there was something I could do to try to improve them or not. I found that the majority of everything I experience on a daily basis could definitely be improved in some way shape or form with some sort of exercise/practice.
Finding a way to lessen the load
So why was I not doing all of these exercises that I knew I needed to do to become the best version of me possible? What was stopping me? After giving this a good deal of thought, I can only conclude that the main thing in my way is fatigue. I just don't have the energy to do all the little things I should be doing to improve myself, to improve my life. So, I'm now under the belief that if I could just find a way to actually manage my fatigue and improve my daily stamina, I could do so much more to fix/improve my health. Unfortunately, fatigue is probably one of the most challenging symptoms to treat in MS and while I'm certain there is something I could do differently to lessen the load, as of now? I haven't found whatever that is. But I have always believed that every problem in life has a solution, so I have to believe that in time I'll find a way to overcome this obstacle and be the best version of me that’s physically possible.
Do you celebrate your MS Anniversary?