The thing about MS that a lot of people don't understand is how widly the symptoms can fluctuate from day to day and even hour to hour. In the family of chronic illnesses, MS is a toddler: sometimes on good behavior, but always just moments away from a full-blown tantrum. And while you can learn to avoid certain triggers, sometimes you just have no idea what caused the meltdown.
And like a toddler hip-deep in the terrible twos, some days are just rough from the moment you wake up until the moment you finally get some sleep.
There are different kinds of bad days. Today, I am having what I call a "Hazy Day." Actually, it's been a whole Hazy Weekend, with no end in sight.
Hazy Days can be hard to explain. You aren't in any terrible chronic pain, and as long as you rest, the spasms aren't a big problem. Neither are insomnia, migraines or nerve shocks.
So what's the big deal? Why do I hate Hazy Days so much, when my biggest issues have taken a short vacation?
While it's true that sharp pain isn't present, what I have instead is a steady, unending soreness in every single muscle. Every small movement burns, and walking feels like torture. I am incapable of taking anything other than "baby steps," when I can get out of bed at all. The level of muscle soreness a Hazy Day throws at you feels like you've gone 12 rounds with Laila Ali, slept on a wooden plank, then walked 50 miles home.
The soreness is bad enough on its own, but it's been rude enough to invite some other symptoms to your day without even a phone call first. Among those party crashers are optic neuritis, nausea, vertigo, severe fatigue and a total loss of appetite. It's very much as if after you went those rounds with Ali, slept on a plank and walked home...you had the bad luck to catch the flu.
And after all that, MS still has one last unwanted guest to saddle you with: cognitive issues.
It's those cognitive issues that make me truly despise Hazy Days. Imagine having a terrible head cold...right after waking up from dental anesthesia. That's about how clearly you're able to function on a Hazy Day.
In the MS community, we call these cognitive issues "Brain Fog." Your memory is shot, you have the attention span of a hyperactive fruit fly, and concentration is just beyond you. Trying to hold a coherent conversation is like trying to nail Jell-O to a tree. It's very aggravating.
Right about now is when I hear: "So why don't you just play through the pain? It doesn't sound that bad!"
First of all, it IS that bad. Think back to the worst flu you ever had, then multiply it by four. Were you able to "play through" that? Secondly, it isn't just the symptoms that keep you in bed during a Hazy Day. It's what those symptoms will become if you don't take the hint and rest: severe muscle spasms, difficulty swallowing, increased risk of infections like UTIs, and increased risk of injury due to falls. And finally, it's knowing exactly what your doctors will say to you if you do get those bad spasms, infections, and/or injuries: "Why weren't you being responsible and resting?!?"
What it all boils down to is this: a Hazy Day means you're completely immobile, you can barely think or talk, you're scared to move lest you end up in the hospital (again), and you're bored senseless. And there is little to nothing you can do about it.
So what DO you do on a Hazy Day? In short: not much. You're stuck re-reading old books and watching sitcom re-runs, too hazy to focus and too sore to move.
Even the thought of getting out of bed is too exhausting to contemplate. All you can do is huddle under the blankets, sip some tea, and hope the symptoms get bored soon and find someone else's party to crash.
So by now you should have a good picture of what kind of awful party MS Hazy Days throws in your unwilling body. To hammer the point home: a post this size usually takes me about an hour from beginning to end. This one, in the rages of a Hazy Day, has taken me nearly four hours to complete. And it's the only thing I have accomplished today.
I hate Hazy Days. Hopefully the fog will lift tomorrow...
Labels: Brain Fog, MS Adventures, symptoms