woman sitting at her desk and working

Why Working Is a Big Deal for Someone With an Autoimmune Disease

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I work today. An eight-hour shift. 4 p.m. – 12 a.m. Tonight will be my fourth shift in a row. Most people work a five-day week, so some might wonder why this fourth shift is such a big deal.

I, like many others, experience chronic pain, and on top of that I have an autoimmune disease called Behcet’s. I will also be having two disks in my back fused in the next few months as the result of a spinal cord injury I have been dealing with for four years now. So again, why is this fourth shift such a big deal?

I push myself every day. Like a lot of people out there struggling with their own illnesses, I push myself too much on a regular basis then run out of spoons and crash.

A lot of people who love me wonder why I do this to myself time and time again. Coming up with an answer to that isn’t easy or simple.

My life started to change when I was 30. I started to experience fatigue, pain and multiple random symptoms. Nothing added up. At this point I was sometimes working 12-hour days. I was always on the go and attributed my symptoms to working too much and not getting enough rest. I’ve always been a hard worker. I’m a personal support worker. The days are long and challenging. I would be the first to stay late if the next shift was working short and the first to accept call-ins if someone was sick.

By the time I was 32 I was really struggling. I suffered an injury to my back/neck at work. I spent months doing rehabilitation but eventually had to quit my job because after that injury I just couldn’t keep up. The things I used to be able to accomplish in a day became less and less. At this time I didn’t understand the difference between being tired and fatigued. And I began to experience depression, because accepting you can’t do what you used to be able to do is hard.

Now I’m 36. Over the last four years I’ve taken almost two years of sick leave. I’ve had to quit another amazing job that I loved. I survived a military move (my husband is in the military) and got settled in a new city. I got a job (not working as a personal support worker) I thought would be less demanding and hard.

What I’ve learned is that just being able to work is hard!

The struggles of dealing with chronic pain and an autoimmune disease that attacks at random is a reality I have to deal with every day.

I work because there are parts of me that don’t want to admit I can’t work. I’ve given up so much over the years. I fight to hold onto everything, even when it hurts.

So this fourth shift is a big deal because I’m exhausted. I’m actually beyond exhausted.

But I’m going to go to work tonight and put a smile on my face. I’m going to make sure all the residents get what they need, I’m going to get all my work done and I’ll look forward to my bed at the end of the night.

Tomorrow, when I’m hurting, I’m going to look back and be proud. I can’t always handle four shifts in a row. Some days I barely make it through two or even one. And I don’t know if or when I won’t be able to work that fourth shift again.

This week, despite the pain, was a good week. Not because I didn’t struggle, but because I accomplished something that for others may be easy but for me is very hard. I worked.

Now I won’t get into the fact that I have a pile of dirty dishes in my sink, dirty floors that haven’t been washed in weeks and mountains of laundry to do. I’m still waiting for my magic cleaning fairy to come. And even admitting my house is dirty is a feat in itself. Those who know me know I hate having a dirty house. But I’ve met some amazing people this past year who have taught me – if nothing else – that I have to prioritize where I spend my spoons. And unfortunately that means the dishes and floors will stay dirty for today.

Be proud of the things you accomplish in a day. Not everyone is going to understand the struggles. Not everyone is going to be able to see how much energy it takes some days just to get dressed. I’m writing this on my couch, in my pajamas.

I write this to give hope. To give strength to others who struggle like I struggle. You’re not alone. Today is day four for me. For that I am proud.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.

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What a Child Wishes for When They Have a Sick Parent

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When I was a little girl, I looked up at the sky every night to search for the brightest star. When I found it, I closed my eyes tight and made the same wish in my head, “Find a cure for my mom.”

I vividly remember repeating it as fast as I could when there was a shooting star, as I believed they had more power in granting wishes.

I never wished for a Barbie doll, a pet or a trip to Disneyland. I just wanted Behcet’s Disease to leave my mom’s body and our family.

This rare, incurable, autoimmune illness had incredible power over us, and I wanted to destroy it with my wishful thinking.

As you can guess, it never came true.

However, other unexpected wishes did.

Resiliency, Empathy and Hope.

These aren’t your typical wishes, but they serve a purpose in my life. They guided me through my childhood into adulthood, viewing things with a different perspective.

I remember how angry I would get when I heard peers making fun of someone due to their appearance or struggle with a task. I could feel the pain from the insults, and I would speak up. They needed to be aware of an invisible disease.

I wanted people to feel included and accepted as they are.

Often times, I played a care-taking role, retrieving ice packs, medication and a thermometer for my mom. The flare-ups were harsh and restricted her to a dark bedroom while waiting in agony for the pain to diminish.

Those were the nights I searched for a shooting star.

I became comfortable in a hospital setting, and I loved to rummage through storage cabinets and take whatever I was allowed to — ID bracelets, basins, gauze, tape and of course a gown. I would bring it home and play doctor, foreshadowing my career.

These unexpected wishes have fueled my passion in working with others. I understand how an illness impacts the whole family, as it’s never an individualized disease. I know there can be setbacks with an additional diagnosis, complications and waiting for an FDA-approved treatment. I know people living with chronic illness don’t want to have a pity party; they just want to live a normal life, even though their normal is a bit different. I have a genuine admiration for my mom and others who face life’s challenges and still find the courage to push forward.

To any person who’s parent is sick, remember that you aren’t alone, and it’s OK to share your feelings, even if you think they may upset your parent. Ask questions, talk openly to your family and remember you did not cause their illness. Together you will get through this.

I’m now 35 and still making wishes.

shani

This post originally appeared on child life mommy.

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Watch This 8-Year-Old Boy With Cerebral Palsy Have an Epic Finish Line Moment

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As 8-year-old neared the end of the race, he heard the raucous cheers from the crowd of supporters surrounding him. Then, just yards from the finish line, he pushed his walking frame away and, despite falling and having to get back up again, finished the race unaided.

Bailey, who has cerebral palsy, completed the Castle Howard Triathlon in North Yorkshire, England, on July 26, The Yorkshire Post reported. The event included a 100-meter lake swim, 4,000-meter bike ride and 1,300-meter run — no easy feat for any child.

Bailey has always been very determined. If he wants to do something he will find a way to do it, even if it is not the conventional way,” Bailey’s mother, Julie, told The Yorkshire Post. “We have always tried to make sure that if there is something he wants to do, there is no such word as ‘can’t.’”

Although Bailey was the last one to finish the race, hundreds of fans and spectators waited around to cheer him on towards the finish line. His family was deeply touched by the support of everyone in attendance.

Watch Bailey finish the race in the video below:

 

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How My Disability Taught Me to Embrace My Own Uniqueness

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Growing up with cerebral palsy in an environment where there was no one to really identify with made it difficult to establish my own normality. So I grew up spending most of my time trying to be the normal I saw around me and fit in. This was fairly ironic seeing as how I’m anything but normal by nature!

I learned it was important to be more like others and less like me if I were to fit in. And yet no matter how hard I tried to fit in, there were always skeptics. From a small child wanting to wear roller skates to my decision to become a teacher, I have always been met with skepticism, which means I have spent a large amount of my time proving people wrong. If the skepticism was meant to deter me, it had the opposite effect entirely. Instead, it fueled my determination to succeed, if only to prove the impossible possible. Each obstacle enhanced my belief in myself and strengthened my spirituality.

I succeeded. I became a teacher, got married and had children.

However, sometimes when you think you’ve figured everything out and appear to have a handle on the situation, life throws you a curve ball. In my case, it was a stroke. After the stroke, the full extent of my disability came to the fore. Whereas before I had a slight limp and my hand was only mildly affected, I lost function in both. I also lost my ability to speak clearly and concisely.

What did I do? I did what I do best. I adapted. Those around me continued to struggle to come to terms with the situation. As far back as I can remember, it was instilled in me that I would one day have to provide for myself. The option of it being someone else’s job to look after me has always been very far removed from my reality and was never an option.

But now I choose to accept the circumstances as they are rather than dwell on what I was capable of before. I am indebted to my children who, from the onset, accepted who I was and, in turn, allowed me to do the same. The stroke has allowed me to embrace my new uniqueness. Instead of feeling ashamed of what has made me different to everyone else, I have learned to take pride in my individuality. I would never have done this in the past.

I have never lost my passion for teaching or discovering my sense of self. I now know who I am and I’m more at ease with myself. My goal of passing on knowledge and broadening horizons has always been the same, but I have had to adapt my thinking and learn to let go of the conventional and listen more to that little voice inside my head that says don’t give up when everything else around me has.

I still feel like I have something to give, and while my body may have given up, my belief that my voice can still be heard is something I hold on to. I use it to motivate myself, especially on days when I think, “What’s the point?” I like to think that this unexpected detour in my road hasn’t been in vain. I hold on to the hope that maybe in my own small way I can contribute and make a difference. Attitude is everything!

I would like to teach my children that whatever challenges they face, it’s up to them to decide how to confront those challenges, learn from them and find something positive to take from them.

I don’t believe my story is different from many others. The difference may only be that I have chosen to share mine with you. It only takes one individual to stand up, be counted and make a difference. This is what truly motivates me.

Perhaps if we all made a positive difference in our own unique way, we would feel more connected to each other and less afraid to be imperfect.

Lesley Potgieter the mighty.1-001

A version of this post originally appeared on WonderBaby.org.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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This 25-Year-Old With Down Syndrome Just Published His First Book

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Marcus Sikora has a flare for the creative.

The 25-year-old from Omaha, Nebraska, has acted in school productions and wrote and produced a one-act stage performance in cooperation with a local high school.

Sikora also has Down syndrome, but that hasn’t stopped him from achieving something that would be impressive for any 25-year-old. As of June 2015, he can add “published author” to his list of accomplishments.

author sitting in library

Sikora’s first book, “Black Day: The Monster Rock Band,” is an illustrated 40-page children’s book. It tells the story of Brad, a paperboy who dreams of becoming a rock star. When Brad discovers the band “Black Day” — comprised entirely of monsters — rehearsing in an old garage, he approaches them and asks if he can become their new bass player. The monsters’ response is swift: “No humans!” So Brad sets out to change their minds. However, he realizes the “Black Day” bandmates have much bigger concerns on their minds.

Black Day: The Monster Rock Band book cover

“[Marcus] is an incredible storyteller with an imagination to be envied,” his mom Mardra Sikora told The Mighty in an email. She and her son worked on “Black Day” together with Marcus Sikora dictating the story as his mom transcribed it.

“Sometimes I’d ask ‘What’s next?’ or ‘Why?’ and Marcus would answer, ‘Stuck,'” Mardra Sikora told The Mighty. “‘All right,’ I’d say, ‘We’ll come back to that.’ Then the next week, we’d pick it up again.”

Author and children asking for autographs

An animated short version of the book, which Marcus Sikora wrote, directed and voices for one of the characters, will be released on DVD around October 1 (trailer below). A “Black Day” music video is also in the works. In the meantime, Sikora is already contemplating the book’s sequel.

Watch the trailer for the animated short and take a look at some of the book’s illustrations below.

Black Day comic

Black Day comic

“Black Day: The Monster Rock Band” is available for purchase here, through Amazon or through Mardra Sikora’s website. You can also keep up with Marcus and Mardra Sikora via Facebook and Twitter.

All photos courtesy of Mardra Sikora.

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This New App Provides a Voice for Anyone Unable to Speak During an Emergency

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A new app is helping people who are unable to speak during an emergency to quickly and effectively get help from those around them.

Jeroen De Busser, a computer science student at the University of Antwerp in Belgium, recently developed “Emergency Chat,” an app that makes it possible for people to communicate quickly when they are unable to speak. De Busser, who has autism, told Upworthy he came up with the idea for the app after having a meltdown during which he was unable to verbally communicate to others what was happening to him.

Emergency Chat allows people to pull up a preprogrammed message on their phones in the midst of an emergency. Users can hand their phone displaying one of the screens below. Display options include “Aspie meltdown” (referring to someone on the autism spectrum), “Trach Meltdown” and “Asthma Attack” — two other emergencies during which the person affected may be unable to speak.

EC App2
Photo via the Emergency Chat Facebook page
EC App
Photo via the Emergency Chat Facebook page
EC App1
Photo via the Emergency Chat Facebook page

After hitting the “continue” button, users can send their own messages to others using a basic chat interface. The user can then explain specifically and quickly how the person or people they’re with can help.

Emergency Chat currently has more than 500 users and counting, according to The Huffington Post. In addition to helping people communicate when speaking is not an option, the app could also help well-meaning bystanders know exactly what they can do to be helpful so they don’t unintentionally cause more harm than good.

The Emergency Chat app is available for download for Android devices here. An iOS version of the app is currently in the works.

h/t HuffPost Media

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