One thing about MS that is true is that it is different for every person who has the disease.
One thing that is also true about MS is that the symptoms can be similar for each person who has MS.
There’s a list of symptoms that we all go through, just nobody goes through them consistently or on the same schedule as anybody else, which brings us to our first unifying factor…
People with Multiple Sclerosis learn very quickly how to make tentative plans. They get used to breaking plans consistently because they simply cannot keep them, due to medical reasons. They get used to modifying plans to accommodate for things like the heat outside, a venue not having air conditioning, or an activity being too physically taxing.
This makes it tough for folks who have MS to date or hang out with friends who aren’t hip to the fact that the disease comes with stuff like heat sensitivity, photosensitivity, fatigue, and muscle weakness. It fundamentally changes the lifestyle of someone who is just diagnosed. It is, without a doubt, the biggest patience-builder of all of the symptoms.
Now, fatigue is universal for MS sufferers. I don’t care what doctors say about “some people” not necessarily having fatigue. If your immune system is busy eating your nervous system, then you’re going to get wickedly tired. That overall heavy feeling you’ve got, literally all over your body — it’s Fatigue. With a capital “F” for “FUCK, THIS IS ANNOYING.”
It’s bigger than being “a little tired” or wanting a nap. Fatigue shuts you down. It’s as though a hypnotherapist has told your body that on the count of 3, you will be asleep, and the rat bastard has counted to 2. Now, you can go ahead and try to live your life with the weight of your whole body on your shoulders without going to bed… but you can trust me when I say, “It ain’t gonna happen.”
Zaps. Numbness. Tinglies.
Whether it’s electric zaps, tingles, numbness, or fire, the odds are extremely high that at some point in your career as an MS sufferer, your nerves will misfire and you will feel something “incorrectly” because your neuron has been eaten!
For me, this has meant numb/tingly feet and hands — and a mostly numb left side. For my friend, Nahleen, she also had numb foot bottoms. Others feel differently — but we all deal with feeling our skin incorrectly at one time or another — and that is scary as hell!
You don’t want to think that your body is interpreting things wrong, because it means you’re broken. And that kind of thinking leads towards…
Depression is incredibly common among MS sufferers. In fact suicide is a big killer among those of us with the disease because there is only so much they can do to manage our pain, and because the disease is degenerative. Once something is broken, they can’t fix it. It’s a very sad thing, where if you think about it too long, it’s going to bring you down!
This disease can take away your will to live so easily if you let it. It changes who you are by changing your ability to make plans, making you tired, and changing your ability to do the things you used to be able to do! You have to constantly fight to assert your personhood. You have to scream from your insides, “I AM ME! HEAR ME ROAR!” That’s what I did when I had blue hair, and what I try to do through this blog. It’s what I also try to do through music.
Heat and Light Sensitivity
Now I thought about just listing “Sensitivity” as a heading, but Heat and Light are what really do it to us – the sun is not our friend like it used to be. Heat will make our symptoms come out. It’s scientifically proven, so we hide in the shade, which also brings up depression for the sun lovers out there.
Some folks are photosensitive to boot and can end up burning more quickly in the sun! Burns make heat make symptoms pop up.
You know that book “Everybody Poops” ? Well some of us need a little extra help — or no extra help! MS messes with your gut — so some of us have no bowel control: and that means wearing Depends. Others of us, like me, can only go to the bathroom if we take Probiotic supplements because all of the medicines we’ve been on have destroyed the gut flora that we need to help us go to the bathroom regularly!
Some of us can control when we pee, and some can’t! But we all have to go…
I have yet to meet online or in real life, an MSer who doesn’t suffer from random muscle spasms.
I was gonna write something about how sometimes we forget about the things we were gonna say, but I totally spaced on what I was gonna put here…
And this stuff is happening on and off, all the time, every day.
This is what it means to have multiple sclerosis.
But happily, the more folks you know who have it, the easier it is to deal with when you have it yourself. There’s a feeling of normalcy when you join support groups online like what’s available on Patients Like Me or Facebook. You learn that you’re doing just fine by getting up every day, eating your 3 square meals, and doing your best to do chores when you can.
You realize that being the best YOU that you can be is what’s important, and that you’re on no one else’s life path. Whether you have MS or not, that’s a really important lesson to know.
You find solidarity among people just like you who are coping with the unknown, and you realize that even healthy people don’t know what’s coming next, so you just handle things as best you can and try to make the most you can out of every day.
Because that’s what life is really all about.