When the Effects of My Chronic Stress Could No Longer Be Ignored

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Stress is an oft-forgotten factor in the equation to good health. Sometimes the tolerance for it is even glorified. More emphasis is placed on diet, exercise and sleep, with stress relief as a byproduct or afterthought.

Why? Is it because these factors are more tangible and easily measured or monitored, while stress is a variable that differs for every individual? And if that is so, then is stress just “all in the mind”?

Well for me, too much stress actually does yield a tangible feedback. This is reflected in my blood tests on a micro level and pain on a larger scale. It is something that touches me physically — something I not only can feel, but see. My joints start swelling up, or my muscles become so inflamed to the point where even medication does not ease the pain.

The emergency alarms of my body are all broken and wailing as it tries to dispose of the intruders, except for the fact that there is no intruder — it is attacking itself in the confusion.

Where do the sources of my stress come from? One of the main factors, as I am sure it is so with many people, comes from work. How did I find out? I was driven to a point of desperation in my first job, where working past midnight on a daily basis was the norm. An accumulation of taxi fares and dinners amounting to hundreds of dollars were often a badge of pride as to who the hardest worker was.

But my red blood cell count had dropped to the point where I was only surviving on half of what was required to function, and as my doctor put it best, “as if you were on a mountaintop with very little oxygen. Yet you are not out of breath because your body has acclimatized to it.”

Who would have thought, me, a Sherpa in the tropics at ground zero. That was the first thought that popped into my head, at least.

I had no other choice; I requested three months of unpaid leave to rest and plan my next step. To my ignorant surprise, my blood count started to improve a little. After it was over, I knew what I had to do and tendered my resignation letter.

That isn’t to say I lived happily ever after, but the increased amount of rest I got, simple as that, did wonders for me.

Many times we ignore the effects of stress because we think it isn’t an acceptable excuse or there isn’t a choice. It doesn’t help that there is nothing to measure it against.

I want this story to serve as a reminder that stress is a big factor in relation to good health, and for people with chronic illnesses whose immune systems have already been compromised from the get go, it might just be the one of the biggest factors of all.

Follow this journey on A Chronic Voice.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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In One Drawing, Special Educator Challenges the Way We Teach Kids

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“Children learn in many different ways. It is time we adapt to their needs,” wrote Chris Ulmer, a special education teacher, on his Facebook page.

Ulmer, 26, is the celebrated teacher whose video of the awesome way he starts class each day went viral in November 2015. He teaches at Mainspring Academy in Jacksonville, Florida, and recently shared a video demonstrating how he believes special education should work.

In the video posted to his Facebook page, Special Books by Special Kids, on Monday, Ulmer points to a picture of a stick figure child on the white board and explains that education is the bridge between where that child starts out and where society wants them to be. But, Ulmer says, not all children start out in the same spot. Some start farther along the bridge, some start above it or under it, and some start farther away from it. What education should do, Ulmer argues, is meet each child where he or she is at.

It is the duty of a teacher to meet students at their current level and guide them to their full capability,” Ulmer wrote above the video on his Facebook page.

Ulmer uses the example of allowing his students to interact by “scripting,” or repeating words and phrases from TV shows and movies they like, to ease them into other types of social interaction.

Check out Ulmer’s video below:

Creating BridgesChildren learn in many different ways. It is time we adapt to their needs. It is the duty of a teacher to meet students at their current level and guide them to their full capability.

Posted by Special Books by Special Kids on Monday, February 8, 2016

 

“Over the last three years I have served as a special education teacher. These three years have been the best of my life,” Ulmer told The Mighty via Facebook messenger. “I have taught the same group of students during this time. They have taught me that every single child is capable of progressing if we are willing to meet them at their current level. I believe it should be the responsibility of a teacher not to impose a mandatory curriculum but to meet a child at their level and guide them to their full potential.”

Ulmer has also made headlines for his initiative to turn his students into published authors and for the cool way he wraps up his classes at the end of the week.

Check out the Facebook page for Special Books by Special Kids, which is updated daily, to keep up with Chris Ulmer and his class. 

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24 Secrets of Special Education Teachers

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We posed this question to the special education teachers in our Mighty community on Facebook: “What’s one secret about your job you wish the rest of the world knew?” Their answers were honest, heartfelt and gave us some real insight into what their jobs entail.

Here are just some of the “secrets” special education teachers want you to know:

1. “It is the best job in the world. You get to be part of people’s lives in a very important way. You will be changed forever.”

2. “My job isn’t ‘sad.’ Yes, although sometimes sad things happen when you educate children with complex special needs and medical fragility (such as seizures, illness or even a student passing away), my job isn’t ‘sad’ like many people often ask me. I find so much joy in my job! I get to form bonds with my students and their families in ways many other educators don’t get to experience, often over the course of many years. And I get to truly see them progress, no matter how small that progress may seem to the outside world.”

Teacher smiling at students that reads 'My job isn't 'sad.''

3. “Parents feel like they often have to fight the system to make sure their child gets what they deserve. We are on your side! We want what’s best for them, too.”

Two women looking at tablet and reads 'We are on your side! We want what's best for them, too.'

4. “Sometimes the hardest part is convincing the kids I work with that they are capable of so much more than they give themselves credit for.”

5. “[My] job doesn’t end when the bell rings, or when the children leave the classroom or even on a holiday vacation.”

6. “We don’t do it for the rest of the world. We do it for the quiet moments [when] amazing things happen. We do it for the smiles, the gains, the tears… We do it for the parents and families of the children we work with, we do it for the trust these children give to us and we don’t ever breach that trust.”

Blurry kids that reads 'We don't do it for the rest of the world. We do it for the quiet moments [when] amazing things happen. We do it for the smiles, the gains, the tears… We do it for the parents and families of the children we work with, we do it for the trust these children give to us and we don't ever breach that trust.'

7. “I wish the world knew what an amazing job this is. I wake up every day with a smile ready to see my kiddos. I can’t imagine any other job that is as rewarding as this one!”

8. “I love my kids and would do anything for them, but if they are sick, please leave them at home. It’s not good for them or me to have a sick learner.”

9. “My students teach me more than I will ever teach them.”

Girl looking at tablet and reads 'My students teach me more than I will ever teach them.'

10. “Don’t tell too many people, but I have the best job and teacher could ask for. I get to develop lifelong relationships with my students and their families. And watching my students learn and grown is one of the most rewarding feelings in the world.”

11. “I wish parents knew that we don’t always like the labels put on kids either. Your child is more than a diagnosis.”

Boy in girl laying in grass wearing sunglasses and reads 'we don't always like the labels put on kids either. Your child is more than a diagnosis.'

12. “We want the world for your child, just like you do. We wish we could provide all the services and supports you want for your child, but there are many things beyond our control. We do the best we can while fighting for what each student needs.”

Blurry man with head on chalkboard which reads 'We wish we could provide all the services and supports you want for your child, but there are many things beyond our control.'

13. “I don’t stop thinking about my students when they leave my class or school. I know I’ll look back in 10 or 20 years and still wonder about them, wishing I knew how they’re doing and that their lives have turned out happily.”

Woman looking up at chalkboard which reads 'I don't stop thinking about my students when they leave my class or school.'

14. “My kids in special education are as smart as yours in general education. It’s just that the world is set up to honor traditional ‘smart,’ not a creative, unique, incredible, unorthodox ‘smart.’”

Eraser side-up pencils and reads 'My kids in special education are as smart as yours in general education.'

15. “I have to say the job is exhausting. However, in saying that, I am proud to be exhausted. Because my exhaustion means the students I teach are closer to meeting their personal goals. They have spent the day forming bonds with their peers and learning valuable life skills. Together we have overcome many challenges and celebrated successes. It is the kind of exhausted you feel after a hard gym session, only much, much better.”

16. “I hate when people tell me I’m a saint for doing what I do. I do it because I love it. The kids are amazing.”

Teacher showing kids tablet and reads 'I hate when people tell me I'm a saint for doing what I do.'

17. “Sometimes choices are made for us about what and how we teach by people who are not in the schools or classrooms.”

18. “Every single student I have ever taught is ‘my child.’ I love them, I worry about them, I lose sleep over them. Their successes are my successes. Their struggles are my struggles.”

Woman helping child which reads 'Every single student I have ever taught is ‘my child.’ I love them, I worry about them, I lose sleep over them. Their successes are my successes. Their struggles are my struggles.'

19. “I wish everyone knew how much our students want to learn and how hard they try.”

20. “Listening to the voices of adults with disabilities has made me a much more compassionate, aware and thoughtful educator. I am so grateful in particular to autistic adults, as I primarily work with autistic young people. There’s always room for me to grow — I promise to keep listening.”

Blurry group of students at a table which reads 'Listening to the voices of adults with disabilities has made me a much more compassionate, aware and thoughtful educator.'

21. “Special education teachers don’t do the work for their students. They make the curriculum more accessible for their students or they give them work at their ability level.”

22. “Our students are just like any other child. They have incredible hearts and big personalities. They have extraordinary talents. They have good days and not so good days. Though they may have behavioral challenges, that does not mean they are ‘bad’ or ‘lazy.’ Though they may learn differently, they can learn. Don’t underestimate or pity them. And most importantly, don’t limit them.”

23. “The fulfillment I get from making a difference in a child’s life, even if just a small one, is the best feeling in the world! It makes all of the long days, nights [and] weekends full of lesson planning and paperwork worth it!”

24. “It fulfills my heart like nothing else could.”

Hands making a heart which reads 'It fulfills my heart like nothing else could.'

Editor’s note: Some answers have been shortened for brevity/clarity.

24 Secrets of Special Education Teachers
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The Moment I Tried to Run Away From My Life

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Do you know the feeling you can get when you run? The harsh pounding of the wind against your chest, your legs jolted by the bounce on the pavement, the endless expanse of clouds swallowing up every other thought in the world?  The feeling that nothing else exists? In that moment, nothing matters but the feeling of flight.

I’m not a runner by any means. In fact, I hate running. But I have run away from many things – emotions, feelings and circumstances that have made me feel uncomfortable. It was how I thought I was surviving fine, when really I was merely getting through. 

I’ve never run — or wanted to run in — a marathon, but I have been through a marathon of surgeries — 27 to be exact. Surgeons fondly call me a “surgical disaster” or compare my intestines to “a glob of boiled spaghetti.” These amazing surgeons ingeniously created a digestive system for me after organ failure and a gastrectomy my senior year of high school. 

Because there had never been a case like mine, there were no promises made. The day of my 21st birthday, I was able to try my first bite of food in three years after 13 surgeries — a frozen waffle, at my request. After being so grateful I could finally eat and drink again after three years of playing with empty water bottles, I could have never anticipated the 14 surgeries that would follow, each one an attempt to fix a wound that had ruptured or stitch that had burst loose. 

Every time I had a medical setback, doctors advised me to just “stop eating and drinking for now.” I was put back on IV’s, and suddenly I had to switch to “machine mode.” As the obedient patient, I did this for several years. It was an odd mix of staying numb, isolated and distracted, as well as crying with my mother and amazing support system. 

***

Being “numb” to my circumstances was probably the easiest way to deal with them. I didn’t have to think, feel or be aware of the reality I numbed myself through by locking myself in my room and typing for hours. When I became desperate to “feel,” I started cooking for my family as an attempt to experience the human sensations of hunger without actually feeding myself. I was hungry for food, for life and for the emotions that come with humanity – emotions which I had to temporarily put “on hold.” I either felt numb or painfully sad, and there didn’t seem to be an opportunity for any new feelings to grow.  If I wasn’t numb, then I’d start crying, getting anxious and tense — and immediately think back to my surgeries, to my life before surgery, and a hate for the path my life had taken. 

But part of feeling human is feeling angry. Part of feeling human is becoming frustrated at, worried and anxious about circumstances beyond our control. Part of feeling human is becoming overwhelmed with the agonizing question, “Why me?” as we shake our fist to the sky, wondering why life can be so unfair. 

In April 2011, I had just been told to stop eating and drinking, once again, in order to heal a fistula. Unfortunately, I knew this routine all too well because I had had several fistulas develop from previous surgeries. I tried to distract myself, numb myself and get from day to day as diligently as possible.

One morning, I woke up with such a fire in my gut, an anger that was so overwhelming that the energy frightened me. I didn’t know what to do with it and the emotions were too overpowering to try to numb them. My thoughts and feelings were threatening to swallow me whole.

With not a rational thought in my head, I ran out the door and just started running. I didn’t know where, for how long or why, but it was the adrenaline of panic — I felt “unsafe” in my situation and wanted to get as far away from it as I could. I had never felt an energy like this before, a red-hot high through my legs, tingling in my chest, tears caught in my eye-sockets that I hoped the wind bashing across my face might dry up. 

I kept running and running, as far away from my life as I could. I was too scared to kill myself, and I didn’t think I wanted to, either. I wanted a middle ground – just to exist in another world, and if I ran long enough, I’d get there, somehow, somewhere.

I ran for three hours before I found a highway, and without thinking, I started running onto the shoulder of the it. I thought, “The farther I go, the further this will all be behind me.” Of course, of all days I decide to run for my life, it starts to rain…and thunder. Suddenly, the highway was flooded, I was drenched and I had cars beeping at me, wondering what a frail little girl in a T-shirt was doing running on the shoulder of the highway.

It was only a matter of time before a police car pulled up to me and asked me to get inside. I was shaking, angry, confused, embarrassed and nervous — like I had just gotten my first detention in school. He said, “I’ve gotten about 30 calls in the past 20 minutes saying this 80-pound-girl is running on the shoulder of the highway. Where did you think you were going?”

I was upset that my escape had been halted, and suddenly very ashamed. Wiping away tears, I stammered, “To the mall.”

“You thought you could get to the mall on the shoulder of the highway?”

“Yes.”

He turned around and looked at me for a brief pause and said, “I can drive you to the mall.”

I refused to look at him, pressed my elbows into my sides and barely whispered, “No, I’ll go home.”

He called my worried parents our way home, saying I was OK and we were on our way home. My mother, after recovering from her concerned rage, asked me what on Earth I thought I was doing. I told her simply that I was trying to escape. I didn’t want to deal with this anymore. I was frustrated with my body and I couldn’t take living under these circumstances for an “indefinite” amount of time. 

All she said was, “But you took your body with you.”

I knew that running on the shoulder of the highway is illegal and there are much easier ways to get to the mall. But what I really wanted was others to know I was having such a hard time — that even with my numbness, discipline and “indomitable” spirit, I needed support. I needed someone to realize I was suffering and talk to me, even if they couldn’t fix it for me. I needed someone to remind me why I should still love life. 

I didn’t want to kill myself because in my heart, I knew how much I adored life.  But I needed a break. I wanted life to get easier. I was sick of living in fear, wading in uncertainty and reflecting on a former life that I was never able to get back before my coma at the age of 18 — a time when life is supposed to open infinitesimal doors. 

Then I remembered times in my life that I was happy. I tried to remember what the circumstances were, what I was thinking, who was around me, what I was doing. And they were small moments. 

Then I realized, it wasn’t feeling “happy” I was chasing after, it was feeling “alive.” I remembered crying over my grandmother’s death and missing her delicate, wrinkly fingers tightly gripped around mine. I remembered waking up in the hospital after my coma and feeling sadness, but also a sense of wonderment, like I was rediscovering the world and seeing nature for the first time. Those were “life-shock” moments — moments infused with humanity, rather than the numb disconnected feeling of estrangement that now seemed to torment every second. They were moments I felt connected.

***

When I finally got home that rainy April day, I wanted to see how much I still cared. I also wanted to remember why I had fought so hard for so long to still be here, and why giving up at this point would cheat me out of any feelings of aliveness that may exist in my future. I had no proof that things would get better, but I did have a few solid things at that moment that I could stand on and anchor myself to, just to get me through. 

In that very moment:

I had my mother who was worried sick about me, and my whole family for that matter.

I had my body with a heart that was beating strongly, boldly, proudly and alive.

I had the rain on my skin and the feeling of being wet, of feeling sensations on this earth.

I had a single tear finally emerge from the numbness, from the anger, a tear that reminded me how much I really do love life, even though it may be hard right now.

I had hope. Even if for now it was just a silly lie I could tell myself.  It’s OK to make silly lies. It’s a creative start to cultivating hope.

I had life. Whatever it was, I had in my hands — a thing called “life.” An entity that was way too huge for me to make any final decisions about now.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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25 Things People With Chronic Illness *Really* Want for Valentine’s Day

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As soon as the first Valentine’s Day decorations go up in stores every year, grumblings about “Hallmark holiday” and “commercialism” often follow. But really, Valentine’s Day is just an opportunity to show the people in your life a little extra love. And the gifts that mean the most to them rarely require a trip to the mall. Sometimes your loved ones just need signs of your support and understanding, especially if they live with health issues.

Recently, we asked people in our Facebook communities who live with chronic illnesses for their ultimate Valentine’s Day gifts. This is what they divulged:

1. “I would love a pain-free day so I could really focus on my husband… He does all he can to take care of our two young girls and me and handles every new roadblock of my illness with caring and grace, but I would like a day where we could just be those two young kids that we used to be, without a care in the world.”

2. “A back rub, sleep and some light-up unicorn slippers. (If I’m always in PJs, they might as well be epic!)”


via GIPHY

3. “To have the energy to spend the whole day with my kids and take them out without needing the following two days to recuperate.”

4. “Aside from having a fantastic, pain-and-symptom-free day, having someone to come over and have a chill Netflix night and chocolate would be most desirable.”

5. “I would love somebody, anybody besides my therapist to say: ‘I understand. How are you feeling? Can I do something to help you today?’ Kindness is what I want.”

6. “Twenty-four hours in a hotel suite. Jacuzzi, dinner in my room, sweet plush bed and glorious, uninterrupted sleep! And a killer massage.”

7. “For people to show compassion.”

8. “One full day without fatigue.”

9. “A maid. I know that sounds selfish, but I’m really struggling to keep up with chores, and I don’t really have any one to help. My husband tries, but after a long day at work, he’s pretty tapped out, too.”

10. “I would love to be able to plan something for Valentine’s Day and know I can follow through with the plan instead of canceling because it’s a hard day.”

11. “I would like my invisible illness (fibromyalgia) to go away and never come back.”

12. “A home-cooked meal and the kitchen clean and tidy to follow. That tells me someone really knows me and will make an effort to make me happy.”


via GIPHY

13. “A day where everyone would believe our pain is real and we are not lazy.”

14. “A cure for chronic migraines!”

15. “Pain-relieving chocolate.”

16. “Just to get a hug, a nice meal and to sleep in. In that order.”

17. “I would like someone to take out my trash. And take the can to the road for pick-up. That would make my day.”

18. “To have a loved one who understands what you’re going through or reads up on your condition so they know how to help you the most.”

19. “A massage. A healing, soothing massage.”

20. “I want to enjoy my family without feeling terrible and eat what I want.”

21. “Just one day with no pain, plenty of energy, no anxiety, no sadness or tears, no nausea and no itching.”

22. “Acceptance.”

23. “I would like a card and chocolate or flowers from someone who cares.”

24. “I would like a day where my entire family understands what I am going through, [with] no judgment on their parts, and to just spend the day with me no matter how I am feeling.”

25. “I just need someone to show they care.”


via GIPHY

What would you like for Valentine’s Day? Let us know in the comments below.

Editor’s note: Some answers have been shortened for brevity/clarity.

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Greyhound Agrees to Pay Passengers With Disabilities It Discriminated Against

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The nation’s largest provider of intercity bus transportation has agreed to compensate people with disabilities discriminated against on its buses.

Greyhound Lines Inc. has agreed to implement a series of reforms to resolve allegations that it repeatedly violated the Americans With Disabilities Act, under the terms of a consent decree filed by the Justice Department on Monday, February 8.

Greyhound will pay $300,000 in compensation to specific passengers with disabilities identified by the Justice Department in addition to compensating additional passengers who have been discriminated against while using or attempting to use its bus service over the last three years. There is no cap on the number of passengers to be compensated or the total sum to be paid for compensation, according to a statement from the Department of Justice.

The agreement still needs to be approved by the U.S. District Court for the District of Delaware, but it would resolve the department’s complaint that Greyhound engaged in a nationwide practice of violating the ADA by failing to provide full and equal transportation services to passengers with disabilities.

The alleged violations include failing to maintain accessibility features on its bus fleet such as lifts and securement devices, failing to provide passengers with disabilities assistance boarding and exiting buses at rest stops and failing to allow customers traveling in wheelchairs to complete their reservations online.

“The ADA guarantees people with disabilities equal access to transportation services so that they can travel freely and enjoy autonomy,” Principal Deputy Assistant Attorney General Vanita Gupta, head of the Justice Department’s Civil Rights Division, said in a press release. “Today’s agreement marks a major step toward fulfilling the promise of the ADA, and we applaud Greyhound for entering the consent decree.”

In addition, Greyhound, which serves more than 18 million passengers each year across North America, will also pay a civil penalty to the United States for the violations in the amount of $75,000.

The agreement also mandates Greyhound implement a series of reforms, including hiring an ADA Compliance Manager, requiring all employees and contractors who may interact with the public to attend annual in-person training on the ADA, providing technical training to all employees and contractors on the proper operation of accessibility features of Greyhound’s fleet and more.

“We recognize the importance of making travel easy and accessible for customers with disabilities, and we’re fully committed to ensuring that customers with disabilities have equal access to our services,” Lanesha Gipson, a spokeswoman for Greyhound Lines, said in a statement, according to Delaware Online. “We’ve made numerous improvements over the years to make travel as convenient and hassle-free as possible, and we will continue to make enhancements to our service that benefit customers who need extra assistance.”

Individuals who experienced disability-related discrimination while traveling or attempting to travel on Greyhound buses over the last three years may be eligible for monetary compensation from the company and should contact the claims administrator, which will be posted on the Greyhound website and at the Department of Justice’s Disability Rights Section after the consent decree is approved by the court.

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