Let's talk about Spoons
Welcome to May I spoon you? I am so happy that you are here! This is a newsletter narrating my personal experience of living with Lupus.
It is not an easy task to explain to people what it is like living with this condition. It is intricate to explain what it is like to live with Lupus because most of the time patients look fine. Lupus patients are doubted their pain and suffering seeing as they are often able to function at work and at home. Yet, there are days or moments in the day where all they can do is rest and/or sleep because they are drained. Explaining to family and friends how we struggle with simple everyday tasks can be difficult to explain. I, for example, am able to be at work all day but am drained by the time I get home. This results in having to recharge the whole afternoon in order to do the same thing all over again the next day. It is hard to explain to your loved ones how you were able to be at work all day but not take a short walk in the afternoon. It is unexplainable because for most of us living with Lupus we cannot understand this ourselves. However, Christine Miserandino was able to explain this best to her friends and thus the Spoon theory was developed.
Christine Miserandino was out to lunch with a friend and began to explain what it was like living with a chronic illness. Christine couldn’t quite right find her words and decided to use spoons to demonstrate. Miserandino used spoons to represent energy and began to explain to her friend that taking away spoons represented the amount of energy taken away from her on a given day. There are days when a few spoons are taken away and there are days when there are no spoons left. There are times when I am able to complete all of my daily chores and then there are days when I have a tough time performing a simple task such as brushing my teeth.
This week - Let’s talk about loungewear. As an educator, my job requires me to be on Zoom for several hours during the day. Thankfully, we do not have to follow a dress code and neither do our students. We are encouraged to feel comfortable as we are at home sitting in front of our screens for most of the day. At first, I was ecstatic, no more dressy pants or uncomfortable jeans! My closet consists of workwear and pajamas, there is no in-between. Wearing pajamas on Zoom was not something I was comfortable doing. I felt slouchy and unprepared. I came across these jogger lounge pants on Target and I am in love! They are ultra-soft (just like the description said on the Target website). They truly feel like they are giving my legs a warm hug. I have three pairs, 2 in the dark navy and 1 in light gray. I am crossing my fingers and toes that they come out with new colors.
In Lupus news… A lupus diagnosis can be overwhelming. I quickly turned to books as my first resource in order to better understand what Lupus is. I found very little information on the web. However, over the years, this has been changing. I came across The Lupus Foundation when I started researching content for my newsletter. The Lupus Foundation has been a wonderful resource to look for information about the condition. One thing that I found important is located under the Understanding Lupus tab. It gives an overview of the daily life and their struggles of Lupus patients. The video below is extremely relatable and perfectly details the impact Lupus has.
Now, May I spoon you? - With the excitement of launching my newsletter, I forget about Valentine’s Day. While I am not personally a fan of this day, I wanted to share a poem from Pablo Neruda. I hope you had a wonderful day with your loved ones full of love and candy.
This week NASA landed the rover Perseverance on Mars! I followed the live feed on NASA but what truly gave me gave me goosebumps this week was the celebration of the scientists and engineers when the touchdown was confirmed. I cried! Their celebration gave me all the feels. Enjoy!
On a personal note, I came across Christina Hernández, an aerospace engineer working on the NASA Preseverance mission, Twitter feed. I am so proud of Latinx representation and I cannot wait for more images coming in from Mars.
Thank you for spending your time with me and please subscribe to May I spoon you? and feel free to share with your friends.
This newsletter details my daily struggle with Lupus and what works for my body in order to help manage my condition. May I spoon you? does not provide medical advice. The contents of this newsletter are intended for informational/entertainment purposes only. Please consult with a medical professional before seeking new treatment and/or medication.