A man in a robe holds a yellow coffee mug with a tired lego face on it.

Strong But Tired

As I struggled to get out of bed this morning, my body aching, my legs burning, every movement slowed and deliberate due to fatigue, I couldn’t help but think about how exhausted I am. When it comes to multiple sclerosis, saying that I’m tired will likely make you think of fatigue. While that is certainly part of it, that isn’t the kind of tired to which I’m referring. After fighting this illness for so long, I’m tired of the fight. Yes, the disease itself is exhausting, but so is fighting it. I feel I’ve done well battling MS, I know I’m strong (much stronger than I thought I was when I started), but I’m also tired.

It’s called “chronic” for a reason

The very nature of a chronic illness, like MS, is that it never ends. In the early days, when I had exacerbations (or “relapses” as some call them), I thought for sure that I’d have periods of time when things were awful, but that I’d recover and be normal again. That was the case for a while, but over time, those exacerbations took a toll on my body. Even though I eventually got on a disease-modifying treatment that finally slowed down my progression, there is nothing to fix the damage that was done. Nothing can repair that myelin (yet, anyway). I live every day with the damage done from those first exacerbations, and it’s difficult.

Fighting is difficult

Battling this disease is difficult and exhausting. Constantly taking the medications, which can include getting infusions or routinely injecting yourself, gets old. All of the routine appointments like neurologist visits, MRIs, and JCV tests take up time. Not only the time from the actual appointments, but remember the planning, the getting ready, the traveling, the waiting. All of that adds up, and it becomes a sizable part of your life. The worse off you are with the disease, the more considerations you need to make. All while also already being fatigued from the disease itself.

MS symptoms wear me out

I do a great job handling my common symptoms. I grin and bear the burning nerve pain. I put up with the spasms that make it nearly impossible to ever be comfortable. The blurred vision when I get too warm or stressed. The constant memory issues and problems figuring things out. The numbness, the weakness, and the falls (damn, the falls get to me sometimes). These issues, if not always there, are always right around the corner.

There is always something

I have so many symptoms, so many damaged nerves, that there is always something to provide an annoyance at best but a real pain in the ass at worst. There is just a never-ending onslaught of issues that I deal with and it feels like I have to handle them constantly. There is always something! It’s exhausting, not just physically, but mentally.

The emotional toll

Living with MS is emotionally and mentally difficult. While I try to never dwell on it, I still go to bed each night knowing that when I wake up, I might be unable to walk, or see, or use my hands. Those fears are very real because every one of those things has actually happened to me throughout my life with this disease. Like I said, it’s not always on my mind, but I’d be a fool to think that it doesn’t have some effect on me.

MS has wrecked many of my relationships

I also feel like my life with MS has wrecked so many relationships, leaving me super lonely in life, which is not great from a mental standpoint. Aside from all of that, I’ve lost my career to my illness, which was essentially my life up to that point. That’s messed with my identity and how I see myself. I feel constant guilt for not working, for not doing more around my house, for not contributing in the ways that I feel I should. I also have to always be concerned with whether I’ll have insurance, a place to live, if I’ll be able to feed myself. These are all legitimate concerns because I am disabled and the constant worrying about them is exhausting.

Keep on keeping on

Life with MS is draining, even when you don’t factor the symptom of fatigue into it. I’ve done as well as you can fighting this disease. I’ve proven, to myself, that I’m extremely strong. I’m actually glad I am one of the ones with this disease, because I know I can handle it. I’m positive there are many that couldn't. I’m not saying I’ll stop fighting this thing, because I can’t (you can’t just walk away and say I’m not going to be sick anymore), I don’t really have that choice, but that’s just one more reason I’m exhausted. I’m strong, but I’m tired, but life goes on anyway.

Thanks so much for reading and always feel free to share!

Devin

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