The cloudy cold dreary weather causes people to struggle with changes in their mood, and pain in their joints. For me, add to it how it wrecks havoc on my foggy brain. There was a time when I think my body just needs some oiling (lots of supplements/vitamins), and could definitely need some repairing but on those cold and dreary days….…I think a new one is the only thing that will help!
At the age of 61, some would say it is normal to forget appointments, people’s names, a movie I already watched (maybe more than once) or even what was said a few minutes ago….. the reality is my brain as seen on my MRI scans is filled with holes scattered all over the place. Some are bigger than others but definitely more than just the few which come with aging.
I love this explanation from a fellow MS blogger
“I imagine words bouncing around in my brain, sliding from hole to hole and hitting road blocks in hopes of finding a way of escape. It’s kind of like they are stuck in a perpetual reality game of Chutes and Ladders.” It is so true. Combine that mess with missing memories and some days I feel like the movie “50 First Dates”.
Yup, I had to look up the name because I couldn’t remember it. If you haven’t seen it, it is about a girl who doesn’t remember so each day is a new day. An average day for me includes not remembering things BUT there are those crazy radon thoughts which find their way through the maze of detours. It is those crazy random thoughts on a good day which make some think, I’m okay!
What happens to the thoughts and memories which don’t find a place to call home? Do they just keep rattling around forever? It’s such a weird feeling to know the words or the things I’m trying to remember are there somewhere…. stuck so they can’t seem to connect with my tongue. Therapists wanted to call it selective memory or that I am repressing bad things. What about the good memories?
I know I frustrate people from time to time with my long pauses, lack of complex vocabulary and not remembering things. I frustrate myself. I used to be able to multi-task, juggling lots of things and remember clearly important events (as well as random nonsense) in my life. Most memories of my childhood seemed to be missing after my addiction so I adjusted or at least I thought I had. I always said I probably burnt out more brain cells than I thought during my many years of using drugs. Then along came the MS. Only recently have they determined loss of memory can be a key factor in the diagnosis of MS so were the gaps in memory addiction or MS. Guess we will never know…
I struggle to remember things when talking to my old HS classmates. I struggle to remember growing up. I struggle to remember the birth of my daughter. I struggle to remember the work and people I met doing social work for 20 plus years. I struggle to remember my wedding. I struggle to remember my accomplishments even looking at pictures or plaques seem like someone else. I struggle with my business to remember prints, products, fellow consultants and even customers/hostess who have been with me for my almost 8 years in business.
I struggle to remember time frames so it may have been weeks/months since I talked to you but to me, it may be less than a week. Some days I can’t remember anything at all, then some days I remember bits and pieces. When people tell me things I have said or done, it seems so foreign to me. Like it was a different person – a person I can’t identify with now. The memories I do have take on a different picture than those of the people around me – some things have fallen into the potholes of my brain still trying to find a way out.
I’m thankful for the people who are patient with me. I thankful for the ones who give me the space and time I need to piece things together even when I get things all mixed up. I’m learning to say “ I’m collecting my thoughts” which is so true some days. I’m learning to be honest and say “I don’t remember” of course the blank stare I give when people talk is often a clue. I truly know what it’s like to sift through words, thoughts and ideas as I attempt to make sense of things.
But that’s my world now…a jumbled up 3-dimensional word search game. The bad thing about it is someone keeps switching the game board and jumbling up all the words. I feel like they see I have made progress with my puzzle and then come along mixing up all of the pieces. Just when I think I have things solved, BAM…there’s a new arrangement of letters, pieces and words to sort through.
Today’s blog was a rambling jumble of thoughts as I come to terms with living life with MS. There are days I try to act like it isn’t there – things are normal (whatever that may be). There are days when I am unable to move because my muscles don’t know what to do. There are days when I actually do remember, and can function as if the MS is only a blip on the radar. Most days, I’m just trying to sift through a sea of letters and words in my brain searching for…what was it again? Pancakes? Trashcans? Envelopes?
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Hope Wissel 