Skip to main content

Spoons and Handicap Permits

Recently, after many mornings of being out of breath and out of energy after walking from my assigned spot 0.4 miles away, I asked for a handicap permit so I could park closer to work.  I have had chest pain, stiff joints (especially in the morning), and shortness of breath, all due to Lupus.  I have not told a lot of people that I work with, simply because I know that judgement that will come from it.  No, I will not use my permit to park closer to the grocery store when I am feeling fine.  Yes, I may use it on days that I am having a hard time getting around, or when I am especially short of breath.

When a friend asked how it helped me, I tried explaining that it gives me a more positive start to my day.  I don't start the day feeling sick, I start it feeling a little better, and with more energy to give to my job.  The best way to explain this?  Spoons, obviously.  If you are not familiar with The Spoon Theory by Christine Miserandino, you can read about it here.

Generally, on work days, I have very few spoons.  I use most of them getting up early, getting dressed, and walking Huck.  By the time I got to work, I would use the rest walking from the parking lot, and would get to work with no more spoons, or energy to spare.  I would struggle through the day before giving up, going home, and passing out of the couch.  Now, I have some extra time in the morning to get ready, and have some spoons left to give to work.

This permit has made a small, but meaningful change in my day, and I'm thankful for my rheumatologist who didn't dismiss it as a silly request.







Comments

  1. I had not heard about the spoon theory before but I just clicked over and read it. It definitely is a great way to explain the struggle. I'm so glad you now have an extra spoon in the morning before work!

    ReplyDelete
    Replies
    1. Yeah, it can apply to so many things but especially illness.

      Delete

Post a Comment

amazon audible

Popular posts from this blog

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…