Desiree Lama shares her experience living with relapsing remitting multiple sclerosis, describing the overwhelming weight of MS fatigue and the early signs she feels before it hits. She reflects on learning to pause, offer herself grace, and let go of comparisons to her past abilities, while navigating the emotional and physical challenges of an unpredictable symptom.
Transcript
Hi, my name is Desiree Lama. I was diagnosed with relapsing remitting multiple sclerosis when I was 17 years old, and I had my first episode of optic neuritis when I was 14 years old.
The way I normally describe MS fatigue is having two, like, anchors attached to my ankles, and I just feel like I am drowning and falling into the abyss of the ocean.
It is very different from being tired, because a nap or a little rest, like laying down for a little while, is not going to alleviate what fatigue feels like. It is much more difficult than just sleeping it off. For me, it can last from hours to days, and it just feels like my body can’t move, and I’m just stuck wherever I’m at.
Fatigue always hits me at the most inconvenient times; if I’m being 100% transparent, it just feels like it’s just something I know that’s, like, lingering right here and that it can happen at any time.
So anytime I’m, like, out doing something, or even when I’m not doing anything, I can just sort of feel when it’s about to hit, like, I feel this wave of dread going through my body, and it’s just signaling to me, like, “hey, like, the fatigue is coming, it’s on its way.”
And the only way that I really know how to deal with that is just to stop whatever I’m doing and kind of give myself grace in order to just relax and rest, even though I know I said that that’s not really, like, super helpful, but it’s better than me continuing to do whatever I’m going to do or whatever I’m doing at the moment.
Because if I just continue doing whatever activity or whatever task I’m doing, it’s just going to get worse. So I try my hardest to give myself grace, even though that’s been an ongoing challenge for me since forever.
But I think that, like, I just need to tell myself, like, “Hey, it’s OK. Like, you’re doing your best. You can stop whatever you’re doing and take as long as you need to get through this.”
What I would tell someone dealing or struggling with fatigue would be to be kind to yourself. I always have to tell myself that, because sometimes I feel like I am beating myself down for not doing what I once was able to do, or just what the people around me are doing.
So just, like, giving yourself that grace. Being kind and just being patient with yourself, because we can’t really control when the fatigue hits us. We can’t control how long it lasts. So just being kind to yourself is the No. 1 thing I would tell other people.
And I still struggle to tell myself that, but I always just try to take it one moment at a time. I know some people say one day at a time, but, like, with fatigue and with the symptoms that come with MS, things can really change from one moment to the next.
So just taking it moment by moment and realizing that you are human at the end of the day and just being kind to yourself.
