I'm just curious. I've always been kind of scatterbrained but it seems as I age, (or is it really the MS?), I find that I can be presented with a situation and instantly read it all wrong before I'm clued in and figure out what I'm seeing.
Example: Pulling in to the bank parking lot, heading for the drive-thru lane. On my left is the bank building surrounded by landscaping. On my right is the parking area. From the right comes a short, squat yellow vehicle with no top, yellow/orange metal framework, 4 big tires and someone behind the wheel.
Immediately I see this as someone in a go-cart heading for the drive-thru lane. Just as I was about to open my mouth and give away the fact that I'm clueless by saying "Hey, look at that! I've never seen a go-cart go through the drive-thru before!" I catch myself.
Within seconds he finishes crossing the parking lot and is either doing donuts in the grass around the building or what I thought was a go-cart is actually a lawn mower.
It seems like my perception of things, at least for the first few (sometimes critical) seconds can be way off from reality.
It disturbs me sometimes. Is it MS, or is it age? Or is it just in my genes? Mom, who was sitting beside me, thought it looked like a go-cart, too.
I just wonder... how do we know if MS is affecting us mentally? I know about the "crying when you're supposed to laugh" and vice-versa stuff, but I'm not really sure about the subtleties of perception.
Or maybe it's just me and that I'm clueless in a perfectly fine, healthy, normal way. :)
My story of being a hypochondriac, an MS patient, and a guinea pig. NOTE: After 16 years on Fingolimod, I'm starting my self-designed study to taper off the drug while avoiding the now well-documented "rebound relapse" phenomenon. I'll be writing about my journey on SubStack and you can find it here: https://farewellfingolimod.substack.com/
I'm 29, with MS on Gilenya from the trial as well....
ReplyDeletea few weeks ago my boyfriend and I were laying in bed talking late one night (probably past our bedtime)
He said something along the lines of "Remember when you said <insert whatever it was here?"
At which point I burst into tears saying "Oh My God! It's the MS! It's hurting my memory! I don't even remember what I said!"
Confused, Josh looked at me, kind of chuckled and said "Beth, it's not the MS, you just weren't paying attention!"
He got me, sometimes I don't pay attention.
He's the one who sent me the link to this post :)
Beth, I'm so happy you have Josh keeping you grounded. It's so hard, with this stupid disease, to know what to blame on MS and what just happens naturally. My motto, apparently, is "when in doubt, freak out."
ReplyDeleteOf course, Josh could always be misremembering, too. XD
Novartis has contacted me about being a potential spokesperson for Gilenya.
ReplyDeleteEek! I'm not sure how I feel about this. But, I have a phone meeting with a person next week, I'm willing to hear them out :)
Beth, I am a Patient Guide (speaker) for Novartis and I have literally just walked in the door from my first ever speaking event. It was AWESOME! You get to meet so many people and everyone is so eager to hear your story.... I hesitated at first as well, but I am so happy I decided to do it. The whole process has been a privilege for me and a life changing experience. I say go for it.
ReplyDeleteThings like this happen to me too. Often it is related to spacial things, like I think things are closer than they are. Other times I'll see something in the road (or what I think is in the road) and misinterpret what I'm seeing and do a frightened gasp, thinking we are going to hit whatever it is...this drives my husband crazy as I no longer drive. Yep, my mind (or at least my eyes) definitely play tricks on me!
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