The Fatigue Deluge
I know there is no shortage of articles online talking about Multiple Sclerosis (MS) and fatigue, in fact, I know I have written about it here at least once. So why am I writing about it again? Well, the fact that there are so many people blogging about MS and fatigue should tell you just how common this symptom is in MS and how much of a central role it plays in the lives of all the people living with this disease. According to the National Multiple Sclerosis Society, fatigue is one of the most common symptoms of MS "occurring in about 80% of people." What's important to understand is that among that 80% of people, the severity of their fatigue ranges drastically; how fatigue affects one person with MS is not the same as how it affects another. At the same time, how fatigue affects one person at one point in time can be very different than how it affects them at another point in time. Like most MS symptoms, fatigue is very dynamic, by which I mean its severity always seems to be changing, and so how I see its effects on me is almost always changing as well.
The subjective measurement of fatigue
Of course, how do you even objectively measure fatigue to know that it is actually changing? Like any other MS symptom, the severity of your fatigue is mostly subjective. Think about pain; a papercut to a 5-year-old is probably the most painful thing they have ever experienced in their life, but a papercut to an adult? Yeah, sure, it might really suck but... life goes on right? Just get a Band-Aid and maybe don't cut any lemons for the rest of the day. We measure the pain of that papercut subjectively, and fatigue is no different. I know there are scales out there that attempt to measure things like fatigue objectively, but all they are really doing is recording the severity of someone's fatigue according to how they describe it, which means it's ultimately still subjective. If we were asked to rate our fatigue on a scale of 1-10, a 6 to you might be a 3 to me, or vice versa.
My own subjective scale
Having said that, it should be much easier to understand my next point: I can say with complete certainty that my fatigue today is much worse than it was just three years ago. You see, fatigue has been with me since the start of my journey with MS, but the severity of it has very much changed along the way. When I think back on the fatigue I had when I was first diagnosed with MS and then the fatigue I have now? It's laughable! Laughable because on my own subjective scale of fatigue, I can tell you that what I thought was terrible then would be amazing now, as in, I WISH I had that much energy! What I used to think was a 9, I now feel is a 2. Basically, when I first started dealing with fatigue, I was like that 5-year-old dealing with a papercut; I thought it was the end of the world but now? Ha!
So over the years, my fatigue has without a doubt got much worse (except for the two years that I was on Tysabri which did wonders for me) and now? It's terrible! It's definitely my most debilitating MS symptom! I look at everything I have to live with on a daily basis such as how I can't see straight because of my oscillopsia/nystagmus (which are so severe that I haven't driven since February of 2015), how my balance is so bad that I now walk with a really wide gait (which has caused me many knee problems), how I can't tilt my head in certain positions because doing so induces an extreme bout of vertigo, and how there are just so many other symptoms that weigh me down in life. I think about all those things and how my life would be so much better if they all just disappear, but then I think about my fatigue and how I would be able to do even more if I could make THAT go away! I would be able to get so much more done, do so many of the things I used to love and enjoy doing that I now never have the energy for, and almost certainly be able to deal with my other symptoms better. My vertigo would surely still suck but not as much as trying to cope with vertigo on top of a crippling fatigue sucks, you know?
Drowning in the deluge
So for the last three years or so, I have felt like I have finally started drowning in the deluge of fatigue I had before always managed to mostly stay on top of, but now? Everything that helped me in the past has seemed to have lost its kick. I mean, they still help, but not as much as they used to. Fatigue weighs me down like a wet blanket has been draped over my entire body while I am trying to move around the house and get stuff done, and that blanket is always there getting heavier and heavier as time goes on. When I wake up in the morning, even after a good night's sleep, getting out of bed is often really difficult because first I have to build up the energy and willpower to not let that "wet blanket" weigh me down while I try to get up.
Sometimes trying to overpower the weight of this blanket feels like when you are working out and lifting a heavy dumbbell; you are trying to get in one more rep than you usually do and you have almost lifted the weight all the way but... your arm stops halfway, you feel it shaking, and then, despite how hard you are trying, it slowly begins to fall back to your side. My current fatigue makes me feel this way about most the things I try to do every day; I can almost do it but... nope, I need to lie down. I guess I didn't quite have the energy I thought I did...
All I have is a glass of water
So my methods of overcoming fatigue (such as medication) used to act like someone spotting me at the gym who could help me finish that last rep. They are now like some dude who is just sitting on a bench in the far corner telling me, "you can do it" when no... I can't... I need someone to spot me! To use an analogy I have used many times in the past, if fatigue was a fire, then the fire I had to deal with in the past was small enough that a single bucket of water (representing my past methods of fighting fatigue) could momentarily put it out. But now, the fire that is my fatigue has turned into a roaring forest fire, and I don't even have a bucket of water anymore, all I have is a glass of water. That glass of water might put out the flame of a candle, but it isn't going to do anything to make my forest fire of fatigue pause for even a second.
As of now, with the tools I have, I feel like I can get about 2-3 hours of moderate "work" done, and then I feel so wiped out that I don't even want to do anything that I would consider relaxing and enjoyable. "Man, I am done for the day, maybe I'll pop in a movie? Hmm... the DVD I want is way over there, and even if I had it in my hand right now, I would have to get up, walk to the DVD player, turn it on, put the DVD in, change the TV input, find the other remote for the DVD player since there are no navigation buttons on the actual DVD player, then adjust the volume accordingly and... you know what? Screw it, Netflix on my tablet... wait... 'internet connection lost'? Oh forget it, I'll just lie down and stare at the ceiling because that'swhat I have the energy to do." This level of fatigue is incredibly depressing, and what does depression cause? Say it with me, fatigue. What a cycle...
Right now I just feel stuck
I'm currently trying to figure out a new tactic to fight my fatigue so I can try to break this cycle and actually function. Actually get stuff done and move forward in life at however small of an increment I can. Right now I just feel stuck in life, which is also really depressing. I have talked to so many people about what helps them, and I have read so many suggestions, tips, and advice online. I have tried many of these things to no avail, but there are still a few things that I haven't yet tried but plan to. Hopefully, I will be able to "get back up on my feet" after this, but in the meantime, while I am outlining my next battle plan, I am always open to suggestions. Maybe the one thing that would change my life is something I still haven't tried or even read about. I know fatigue will almost certainly always be part of my life, but my goal is to make it a smaller part.
What advice do you have for the many people living with MS that also have to struggle with the intense level of fatigue that this disease so often brings about? Share your thoughts, experiences, tips, advice, and opinions below!
How many specialists did you see before finding "The One"?