Shout, Shout, Let It All Out: Moment of Frustration Day Is Here!
Way back when the leaves just beginning to change and we began to feel a crispness in the air, a special day was documented. On October 12, 2021, marked an opportunity every person with MS should have taken advantage of International Moment of Frustration Day!1
The many frustrations of MS
Of course, we don't need one specific day to call out how frustrating MS can truly be. There are so many ways that it can interfere with our lives, some big, some small.
- attend social events where there isn’t a bathroom nearby, just in case
- get out of bed because of janky legs, dizziness, or deep fatigue
- walk, even if only across the room
- hold a coffee cup without spilling it
- see clearly (take your pick: blurriness, nystagmus, tunnel vision, diplopia)
- find words or finish sentences or even speak at all
- maintain a career you love
I could go on and on because, when it comes to MS, there isn’t a single function that can’t be disrupted by the demyelinating efforts of our faulty immune systems. These are, all of them, good reasons to issue a core-cleansing screeeaaammm!
It's not just in our heads!
It’s not such a stretch to imagine ourselves in the same position as William Shatner’s character, Mr. Robert Wilson, in that 1963 episode of The Twilight Zone, “Nightmare at 20,000 Feet.”2 Wilson is a salesman on sick leave, traveling home on an airplane.
This, apparently after spending some time in recovery from a prior nervous breakdown. But we’ll not go there in this discussion except to wonder: who among us with MS hasn’t felt like it was driving them crazy?
Wilson has the unfortunate experience of being the only passenger on the plane to see the ugly monster outside his window seat view, staring in at him while standing on the wing of the plane. What’s worse, the gremlin proceeds to mess with the engine on the wing during the flight, something that Wilson warns the flight attendants about.
Of course, his pleas go unanswered. Sound familiar? The rest of the story is also a familiar madness, with a twist: after the plane crashes, evidence shows that Wilson was right all along. The gremlin was, indeed, the cause of the damage to the wing’s engines! Nope, it wasn't just in his head. And neither is your frustration with MS just in yours.
It's time to voice your frustration
If you’ve ever felt frustrated because your MS is invisible? Your condition is unseen by anyone but you — though you know that it’s behind all the crazy things that are happening to your body? Well, you’re not so much different than our friend Mr. Wilson here...or all the millions of other people who live every day with MS.
Annually on International Moment of Frustration Day gives us a well-deserved chance to vocalize our frustration with living with MS. So here's your permission, on a global scale.
Every October 12th, scream as loud as you like, swear if it suits you, shout it from the rooftops, clang lids against pans, throw a scream party, deliver a harsh throat-burning diatribe if you must! All’s fair! And let’s face it, you’ll feel a wee bit better afterward, even if only temporarily.
What will I scream about?
It’s hard to choose. But for 2021, I will dedicate my moment-of-frustration scream to all the times I’ve made plans to do things I really wanted to do - Christmas eve celebrations, Oscar viewing parties, the Portland to Coast Walk Relay — only to cancel at the very last minute because of MS symptoms.
I really hate it when my best-laid plans over weeks and months are shot down because MS decided to raise its little gremlin head. These disruptions are definitely worth a howling purge.
How about you? What MS gremlins will you scream about?
Do you ever swear you smell smoke or cigarettes but there's nothing there?