Let me count… Roughly speaking, I was diagnosed with MS about 5000 days ago. That’s one fair bit of experience under my hood, right?
When talking to people, new or otherwise, it can be difficult telling them you’re living with an incurable neurodegenerative illness. Sometimes it feels like being in an uninterrupted car crash, minus the brakes, seatbelt or the steering wheel, especially when they add their own preconceived ideas about MS based on hearsay or pop-culture folly.
Even if you’ve been living with MS for a decade or for just one day, you’re occasionally hitting walls of guessing, worries, disbelief and/or anger at each turn.
You’re in denial.
(they’re probably as well at first)
(there’s a fair chance they are trying to remain cool under pressure when you find it difficult accepting your illness)
You’re wondering what now.
(if you’re questioning everything, imagine what others are thinking who don’t have MS)
But, you are the one with the illness that nobody understands, so your perception of reality is a little more tangible.
A little more fearful and overwhelming also.
You learn to live with the what nows and what ifs.
Eventually, though, you find your feet.
(and at some stage, those around you will find theirs also)
You find out who will be there and those who will find a reason to blame you for being sick.
Never mind them.
They’re just loose fodder in the wind.
(I call them the “good riddance crowd”)
Never forget that even when you’re looking at the same thing, your perceptions of reality will differ from theirs.
What people see is inherently flawed by nature.
So, never mind pointless chats or mindless bickering.
You know you are still you.
So, pull up your big girl panties or your best PJs and step into the weekend with an open mind. Get out the chocolate, coffee, cake, ice cream and everything else to make your weekend a small party.
Never mind if you only last 15 minutes, it is 16 minutes of gained experience.
©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis and Me, 2018