I Have Learned…

by | Aug 29, 2022 | ME/CFS, Orthostatic Intolerance, Patient Voice

I Have Learned…

My worth is not in what I can do, it is in who I am
That people don’t really think about the fact you are in a wheelchair
Except to be on the alert if they might be able to help you
The grieving process is a circle

I have hard days, but I had hard days when I was healthy
They were just as hard, just in a different way

What is so important I had to be pushed from a career I loved to find it

The glory of not wearing pants for days and days and days
And the deliciousness of taking a shower after days or weeks without

I have learned to love my friends
Though we are now in different worlds
Theirs going on outside my window without me
Their world can’t stop even though mine has
But I know they still love me

I have learned to read tiny subtle cues of my body
To listen
To be more patient with myself

I have learned the difference between wants and needs

I have learned how to ride out a crash

I have learned that if I squeeze into thigh-high compression tights
And sit way back in a luxury seat
With my legs on the food tray
I can go to a movie once in a while

I have learned sound from music costs too much energy
But I remember the songs and can listen inside my head

I have learned what I liked about my job as a teacher I can still find ways to do
Just for today
One day at a time, one hour at a time, one minute at a time

What tired but wired
And bowling ball head feels like

That I can have dreams where I have POTS and have to lay on the ground
And I can have dreams where I can fly

That there are some amazing people who have this illness too
And how much love I can feel for someone I’ve never met

That if I can’t do something, it’s ok. I can try again later
Lume deodorant is awesome

Every detail of the trees outside my bedroom window
I can be happy even if I feel sick
But it’s ok to be sad or angry sometimes too
I look at the challenges other people have and if given a chance to trade
I would still choose mine

The easiest way to get my foldey electric wheelchair in the car
And about salt tablets and pacing
And that the bag thing under my wheelchair is a great place to stuff snacks and drinks that may or may not be allowed to bring in to where I am going
That people don’t watch where they are walking and step right in front of your wheelchair

To not be bothered by quiet
Or stillness
What it means to rest aggressively
And that taking time to do nothing is actually doing something


We asked Laura to answer a few questions about herself to share as part of this blog post. Here are the questions and answers unedited.

Q: Where do you live?
A: Utah, USA

Q: What was your occupation before becoming sick?
A: Before I got sick I was an elementary school teacher and loved it.  I taught at the school two blocks away from my house.

Q: What were your hobbies?
A: Before I got sick hobbies were: sitting up, standing…haha.  (Sheesh I miss just sitting and not having to have that be an effort.) I read ravenously and loved reading several hundred pages in an evening, enjoyed going out with my friends, talking on the phone, listening to music, cooking, shopping, watching TV and movies, writing, computer games, shopping, teaching parenting classes for the county behavioral health program, going on outings with the family including traveling, going to ComicCon, concerts, movies, and community activities.

Q: What are your hobbies now?
A: After I got sick my hobbies are: puttering on my iPad including looking at and buying rocks on eBay to hold when I’m sick, watching videos on YouTube including ASMR/tiny home living/Reiki/rocks (not able to watch much of anything with plots, my son likes to come up to my room and show me YouTubes about his video games and other topics that interest him while I nod and comment as if I understand it all), Reiki, practicing my DNRS, messaging friends through Facebook, running a CFS Facebook support group and continuing to run the Facebook group I made for my city before I got sick, finding ways to serve others (because that is when I feel like myself again), on rare really good days being taken out for drive through and eating in the car (with me laying in the back seat) or a short outing with the wheelchair (where I take a million pictures like we are at Disneyland so I can look at them during times of PEM payback), reading a few pages of a book, watching something short with a plot that is not too intense, short video calls with my mom, and spreading disability awareness by laying in public places (on a booth bench at a restaurant while trying to eat out, on a bench at the museum while family looks around, on a blanket on the ground at Food Truck Friday, etc.) or by “accidentally” running into people who aren’t paying attention that walk right in front of my wheelchair.

On bad days when I have to lay in the dark in the silence my hobbies are holding the rocks I bought and thinking about how different rocks feel different in my hand, prayer/meditation/Reiki, roller skating in a big abandoned warehouse or empty office building in my mind, going through every aisle of Walmart in order in my mind and thinking about what is on each shelf on every aisle until I fall asleep, and snuggling with my very supportive dogs.  On the tired but wired nights where I can’t sleep my hobby is looking at websites of fast food places whose food I am craving even though everywhere is closed and it’s all carb-laden food that I shouldn’t be eating anyway.

I would love to get well enough to be able to write more.  Please note that cognitively impaired me missed the “HOPE” part of the poetry writing assignment [the poem was written in response to the BHC call for messages of hope].  I went for the angsty and depressing “oh my gosh this is terrible give these people all the money they want for research” angle (most of the time I am able to find happiness, though sometimes in ways that are different than before I got sick).

Q: How long have you experienced chronic illness?
A: My 3-year sickaversary is August 2022.  I have ME/CFS, POTS, and recently added diabetes just to mix things up and mess up my hobby of eating delicious, delicious carbs.

Q: What would you like to share about your family situation?
A: I have a very wonderful, patient husband, Jim, two sons: Ed (21) and Logan (18), and three rescue dogs: Sophie (chihuahua), Charlie (Italian Greyhound mix), and Ferrari aka Rari (Italian Greyhound), and LOTS of rocks

 

 

Picture of poem author, Laura, prior to illness.

Picture of poem author, Laura, after becoming ill.

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