Pins, needles, and plot twists: life with MS

It is Mustache Day!

I hear you thinking, “What?!”

So, we are back to square one, aren’t we?

In case you were still wondering what on earth I am rambling on about:

We: the ghostly fluff.

Heck yeah. We are teasing you out of desperation—or so it seems- to get some relief.

We, the gastly mop’s itching, is going where no one has gone before. And yet, we are abused, plucked, and erased from our seat of power somewhere in your upper regions—AKA Brain, Spinal Cord, and Optic Nerve.

For this episode, however, Miss Brain will feature as a solo act.

But, yeah baby, we are back!

Undeniably as much as possible. And the MS-show needs an answer.

It is laughable that it is still ongoing.

You’ve already told your neurologist that you keep feeling as though a heavy fringe hangs against your forehead, and you keep on scratching your manes. You’ve tried everything to make it go away: E45, La Roche-Posay, Aveeno, Eurax, and you’re about to try iron brushes and chemical peeling if things don’t improve.

For those new to IMSM, here’s a solid question: how can there be an invisible waft of fluff pressed to your forehead when you have been sporting a pixie cut for 25 years?

So, I once again tell Mr. Neuro that now it feels as though my fringe has dropped a few floors, and the itch landed right under my nose. I hear a loud sigh on the other end of the phone, which can only mean one thing:

Dysaesthesia in the ‘tache area.

Yes, right under my nose—tickling me incessantly. I am about to tweeze, shave; Flawless; IPL; or No-No on my bare un’tached skin because this is becoming utterly farcical, if not asinine.

The answer? “Sensory feelings, I’m afraid you’ll have to get used to it.”

Well, what a shitty thing to say, doctor. I won’t roll on the floor like my dog when her back is itchy.

I love my Beagle, but that does not mean I have to start wiping my face on the same living room rug.

I have had sensory issues for more than twenty years. You know I have. So I don’t need a standard answer; I need you to help solve this.

Answer: “Try to find something else to think about.”

Thank god I have a new boyfriend. He’ll keep me occupied.

People with MS differ significantly from one another because neurological symptoms vary widely in type, location and severity. Nevertheless, we are all neurologically challenged, physically altered, yet mentally prepared to do everything to stay up and running—until our bodies say, “Hey there, wait a minute! What the hell do you think you’re doing, you little nerve-pain rascal? Those are MY brain cells and my spinal cord! Only I get to play with them!”

We know our central nervous system can be unpredictable. We experience the strangest, most misunderstood symptoms at the most inconvenient times. We learn to work around our symptoms as best we can. We stay silent when we should share.

To name just a few: stabbing nerve pain that takes over your facial nerves and makes it difficult to smile. Then there are the pins and needles in my feet. Imagine running over a burning nail bed—only longer and more intense. As for fatigue, when we are tired, we are truly tired, but that doesn’t mean life should stop. It is the kind of tiredness that sends you to bed only for you to wake up needing even more sleep, so why not live life anyway? It is the kind of tiredness that makes you dream of islands with blue water and your bare-chested boyfriend tells you to hop on his back and run to the water to cool down.

You little minx, you.

But that is what fatigue does to you. Your mind begins free-falling through unshaken, delightful images of the life you adore and must live.

That is us, with MS: doing what you always dreamt of doing because life is everyone’s gift to your soul, even when your body makes you itchy for more.