When You Run Out of Spoons and Your Brain Goes Into 'Low Power Mode'

37
37
0

As I’m writing this, it’s 3:30 p.m. and I’m beyond exhausted. A normal person would be excited to get off work soon and go home to do whatever they want. I’m curled up on my couch feeling like I can’t even move or keep my eyes open. How is laundry going to get done? The dishes? How can I take a shower? Or even just move myself to the bed, so I can rest! All of those tasks require energy I just don’t have within me. I don’t have the spoons!

I woke up today at 9:30 a.m. to my neighbor’s dog barking for over 30 minutes straight. I wanted to yell at the dog to be quiet, or yell at the neighbor for just letting it go on that long. But instead I just accepted that I needed to get up. So I started my day feeling like I hadn’t even slept, even though I went to bed around 11:00 p.m.

 

So now at 3:30 p.m., I can barely compose a sentence in person. I mix my words up. I just can’t seem to get the correct words out, or I physically can’t think to actually have the words come out of my mouth. I can’t focus or concentrate. My husband just called me on his way home from work, as he usually does. But I had to keep asking him “What!?” or “What’s going on? Are you coming home?” The poor guy just gave up and said, “OMG you are too tired! I can’t talk to you right now.” And he was right. I was trying so hard to listen and hear what my husband was saying, but I just couldn’t. No matter how hard I tried.

It’s as though my mind is literally shutting down or putting itself into “low power mode.”

notification on phone of low battery

My mother has called me before and had to hang up as well because I just couldn’t think! It’s sad that the people around me are realizing and just getting used to this happening with me. But that’s just how it is.

It is really frustrating because you know you have all these things that need to get done, but boy is it hard to get anything done when you can’t focus! My brain is basically saying, “Nope, not allowed. We don’t have enough power for that.” But it still needs to get done! Power or not! What am I supposed to do, brain?! The world does not stop moving for us simply because you don’t have enough power.

There is no good answer for the question “What am I supposed to do?” You essentially have to ask yourself, Do I want to push through this and pay for it later? Or do I want to rest up and feel a little more human tomorrow? Maybe then I can accomplish some things. Either way, there isn’t going to be a fix. It will happen again tomorrow, it’s just a matter of when.

woman wearing sunglasses

When I first talked about this brain shutdown on my blog, Jana Owlf Designs, I had readers mention to me that this happens to them as well. It was nice to hear I’m not the only one that goes through this. However, another thing my readers pointed out – brain shutdown can really make it hard to keep a job. And it is true! It is one of my concerns going forward and one of the reasons I am only looking for part-time work. It is a sad but very true reality for some of us. But what’s important is not letting it define us. It is just another one of those burdens we carry, but it is not who we are.

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

37
37
0
TOPICS
JOIN THE CONVERSATION

19 'Hacks' That Can Make Dining Out With Crohn's Disease Easier

74
74
0

When you have an illness that affects your gastrointestinal tract, eating can become more complicated, and you may be required to plan your meals ahead of time to accommodate your specific dietary needs. For those with Crohn’s disease, a type of inflammatory bowel disease (IBD), dining out can be a daunting task. Will the restaurant have food that’s “safe” for you to eat? Will your friends or family be upset if you request to eat somewhere else? What will you do if you accidentally eat something that sends you into a flare? Is there an easily accessible restroom nearby?

Although it might take some extra planning, many people with Crohn’s (and other food restrictions, allergies, etc.) have found that it is possible for them to dine out. So, in partnership with Girls With Guts, we asked their community as well as our Mighty community to share their “hacks” for making dining out with Crohn’s disease easier. Maybe some of the following can help make eating out more of a relaxing and enjoyable experience for you, too.

Here’s what the communities shared with us:

1. “I always order everything as plain as possible and stick to places I know I can get something that won’t bother me.”

2. “I try to find menus online before going to the restaurant so I am prepared for special accommodations I need to make for my order.”

3. “I scope out the bathrooms ahead of time. I try to avoid restaurants with no bathrooms! Those are the worst!”

4. “Without making a big deal of it, if I’m having a bad flare and can’t handle food, I encourage friends to eat what and where they want and don’t mind me if I can only do lukewarm water or ginger ale. It’s about shared company more than food. I try to normalize that, so people don’t feel uncomfortable eating around me. The needling, mocking and pushing me to eat comes from their own discomfort, so minimizing that helps everyone.”

5. “I often stick with water since soda increases my output.”

6. “If ordering carryout or delivery, I write down my order to make sure I get everything right, especially with brain fog.”

7. “I do my best to be kind to my servers and explain that I legitimately cannot eat certain things and I’m not trying to stick to some fad diet.”

8. “Sometimes I eat a little something before going so I don’t want to eat as much at the restaurant. But now I have an ostomy and just empty it before I leave.”

9. “I have a mini pharmacy in my purse! Tums, pepto, Imodium, gas relief pills, everything for digestive help!”

10. “I make sure I’m able to go home straight after eating, just in case something affects me.”

11. “Do a movie and then dinner, not the reverse.”

12. “I’m very open about things and have zero problem sending something back if it was not what I ordered. I tell them straight up I’m not paying for this because it’s just going to go to waste if it’s something I can’t eat.”

13. “I always order off the kids’ menu!”

14. “I try to eat ahead of time so I have something in me I know my stomach can handle, then I can get something small on the menu and not feel pressure to eat it all.”

15. “I always check the menu before agreeing on a restaurant. If I can’t eat anything on the menu, then I’m honest with whoever I’m meeting and suggest a different place. If I really don’t have a choice then I stash safe snacks in my purse.”

16. “Sometimes, planning to meet at a place with several dining options is good, because a group can negotiate on the spot to meet everyone’s needs/preferences. I also encourage potlucks/picnics. Whether homemade, from the store, or picked up from a favorite restaurant, it’s a good way to make sure you can eat something. Also, places like malls, especially outdoor malls: everyone can go to the place they want, order to-go and meet back at an outdoor bench or table to eat together.”

17. “We try to go before or after the dinner rush. Less people, less of a wait. Easier on me by a lot.”

18. “Mostly get take-out, otherwise eat and immediately go home.”

19. “Always get the outside seat of the booth!”

What are your “hacks” for dining out with Crohn’s disease? Let us know in the comments below!


19 'Hacks' That Can Make Dining Out With Crohn's Disease Easier
74
74
0
TOPICS
, Listicle
JOIN THE CONVERSATION

12 Years Later: A Letter to My Crohn's Disease

29
29
0

It’s safe to say the month of July has been my least favorite month for the last 12 years. July 23, 2005 was my own personal “D-day”…the day I was diagnosed with Crohn’s disease. I managed to stay out of the hospital and control my disease with oral medication until July 2008…fast forward to July 2015 and I was hospitalized with my third bowel obstruction in 16 months and told I would need bowel resection surgery. The month of July is just not my friend! When I got engaged my mom and I looked at one another and knew the wedding would not be planned during that month.

husband, wife and their newborn son

As August approaches, I always feel a bit of relief. I can hardly believe yesterday marks 12 years since I was told I had a chronic illness, for which there is no cure, and one year since I started this blog. Here’s a letter to my old friend, Crohn’s.

Dear Crohn’s,

You’ve been a part of me for so long now, it’s difficult for me to remember my life before you. You’ve challenged me, shaken me to the core, tested me and taught me. You’ve pushed me to my limits, but grounded me at the same time. You’ve caused me to think about health in a whole different light. The stigma of living with you and the lack of education out there about what you are surprises me to this day. You are so much more than a “bathroom” disease. You are so much more than a bad stomachache. You demand constant attention and don’t care who has plans, because you do things on your own watch.

natalie wearing 'the mighty' shirt and holding her baby son

You perplex me just when I think we’re in a good place and I have you figured out. You love to play hard to get and rarely take my feelings or worries into consideration. You test my patience and have created a constant inner dialogue in my head since the moment the doctor opened up his mouth and uttered the words… “You have Crohn’s disease.” 

I will give you credit though – for the most part you’ve responded well to medication and allowed me to keep my drug regimen in check the last nine years. I’m thankful you’ve enabled me to stay on Humira and that I have yet to build an antibody to the drug, even though I went off of it for three months while healing from my bowel resection surgery. You obviously love when I’m pregnant…you tempt me to want a huge family! Even though you’ve stricken me with several hospital stays, surgery, scary ER visits, tests, pokes and prods…you stayed silent on my wedding day and enabled me to become a mom without causing one complication or issue. For that, I am eternally grateful.

mother holding newborn baby in the hospital

You’ve also empowered me and brought clarity to my life about what’s important and how far a compassionate heart can go. While most of the time I think of you as my greatest enemy, at times you’re also my greatest ally. You show me people’s true character, and who is a true friend. You shed light on who I can lean on when I’m too weak to stand on my own. You helped me navigate relationships and realize that Bobby was the best person and caretaker a woman could ask for. When you decided to strike I was a frail 21-year-old girl, fresh out of college, wondering how I was ever going to live a normal life and work full-time. In the last dozen years, you’ve been with me every step of the way and witnessed firsthand how I’ve overcome each setback, each flare-up, all the scares and all the daily worries. I hope you’re scared of me now.

Here’s to many more years,

Natalie

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

29
29
0
TOPICS
JOIN THE CONVERSATION

Massachusetts Court Rules Employers Can't Discriminate Against Medical Marijuana

834
834
21

On Monday, Massachusetts’ Supreme Court ruled that employers cannot discriminate against employees who take marijuana medicinally as authorized by their physician.

According to court documents, Cristina Barbuto was fired by her employer Advantage Sales & Marketing, LLC after she tested positive for marijuana on a work-mandated drug test shortly after being hired. Barbuto told her employer she would fail the drug test because she took marijuana medicinally for Crohn’s disease.

In 2012, Massachusetts’ voters approved a ballot initiative for medical marijuana. Under the law, Barbuto was certified by her physician to legally use marijuana for medicinal purposes.

After telling her employer she would fail the test, Barbuto was told her lawful use of marijuana would not be a problem. Barbuto started her first day of work and then, after the results of her urine test were in, was fired for testing positive for marijuana.

Advantage Sales & Marketing justified Barbuto’s firing stating they were following federal laws as opposed to Massachusetts’ state laws, despite Massachusetts being where Barbuto lives and works. Barbuto also testified that she did not use marijuana at work, and therefore, it did not affect her performance.

Because marijuana did not influence her performance and because it is legal in Massachusetts, the court justices ruled Barbuto was protected against discrimination under Massachusett’s state law. Marijuana, they continued, is a “reasonable accommodation,” and the company would have had to provide Barbuto with a medication equally effective to justify their firing.

The court’s ruling does not protect all employees. If Barbuto was a federal contractor or if marijuana affected her ability to perform her job, the court would not have ruled in her favor.

“The decision is not surprising, because of the unusual circumstance here that Barbuto’s marijuana use seems not to have affected her job performance at all,” Mark W. Batten, JD, wrote in The National Law Review. “This decision thus follows the Court’s similar treatment of alcoholism, which is a protected disability as a matter of status, but does not preclude employers from taking action if an alcoholic employee’s illness causes problems at work.”

The court’s decision is considered the first of its kind, which will likely come up again as more states legalize recreational and medical marijuana.

Thinkstock photo via TheCrimsonRibbon. 

834
834
21
JOIN THE CONVERSATION

What to Keep in Mind if You're the Friend of a Crohn's Warrior

129
129
1

To the friend of a Crohn’s Warrior:

Being diagnosed with Crohn’s disease is a life-changer. One that, if not handled properly, can be fatal. Many do not understand the effects of the disease. Some say and think, “Oh, it’s just a pooping problem.” But dear reader, it is not. And others will say, “At least it’s not cancer.” Correct. But it is an incurable disease that progressively worsens and has severe and life-threatening complications. This disease makes one find out who their real friends are. It makes friend groups go from 20+ to not more than five. I, dear reader, am a Crohn’s Warrior. All of this you are reading is true.

 

Being called a “Crohn’s Warrior” is a proud statement; however, it also comes with its own problems. Being a Crohn’s Warrior means you have sat through incomprehensible amounts of pain. Exploded either on or near a toilet (sometimes more than once). Bleeding by the ounce into the toilet. Constant fear of when the next flare will hit. Anxiety from not knowing where the nearest restroom is. And being around people who cannot simply understand without actually having firsthand experience. But being called a Crohn’s Warrior means you are badass. You are able to sit through a full 15 out of 10 pain scale straight-faced. Being in excruciating pain and being able to hide it. Being able to fake being normal. Even though we all (us Warriors) know we are the opposite of normal.

Enough with the meaning behind Crohn’s Warrior. Dear reader, let me tell you what it is like to have Crohn’s.

The problem with Crohn’s is that it is an autoimmune disorder. Meaning that the immune system that is supposed to keep you healthy is literally trying to kill your digestive system. An additional problem with Crohn’s is the disease is invisible. You have passed people in public that have had Crohn’s. You just don’t know it. The only way you know is if the Warrior tells you. The only visible signs to you might be weight loss, loss of skin color, fatigue and the general ill look. The visible signs for the Warrior in addition to the previous listed might be foul smelling and/or bloody stools, diarrhea, joint and eye pain, severe stomach cramping and pain, using the restroom too many times to count. But these aren’t what every single Warrior has. It varies by severity. The Warrior writing to you has Crohn’s from his mouth to his anus. That’s as involved as it gets.

MIGHTY PARTNER RESOURCES

Dear reader, if you think going through that is bad, try not knowing what is wrong for months (I went six months), and having countless tests done all coming back negative. You give up. But that one final procedure figures it out. Months later, a colonoscopy. But even after you are diagnosed, you’re not out of the woods yet. You still need countless tests and medication. That’s if the medication works. You go on a steroid, and you get better. But Imuran that’s supposed to take over doesn’t work. You get worse. Maybe hospitalized. Your doctor wants Remicade. You go on the $18,000 treatment. An IV in your arm every few months and something finally works. It’s about time because the pain medications aren’t working and all you feel is straight pain and diarrhea.

Since you are nearly symptom-free you think you are out of the woods. But you’re not. Friends leave and you get lonely. The ones you do keep rarely have time for you.

The one symptom nobody talks about. Not even many Warriors. Depression. Crohn’s makes you realize who your friends are. And even those “friends” don’t always make time for you. Dear reader, when I got to this point I relied on my dog. The one “person” who I knew wouldn’t leave.

Reader, if you haven’t stepped into your Warrior’s shoes, please do so now.

Imagine having a disease that has complications that can kill you. That’s right. Death. Complications from Crohn’s can kill you. If that doesn’t, then the treatment could. Remicade is an immunosuppressant. While on Remicade you are at a very high risk for getting hospitalized and/or cancer. The simple chest cold to the normal person is pneumonia and fighting for my life in the hospital for me. I have to avoid sick people; it is my new job that I’m not payed to do. But that’s nothing compared to cancer. Colorectal cancer, skin cancer, lymphoma… Now, dear reader, imagine having that in the back of your mind every second of every day. Not knowing if today is your last.

Now that you have seen their perspective, think to yourself, “Would I need support from my friends?” The answer is likely yes. Once a Warrior gets lonely, they may be afraid to reach out to people, for they feel they are a hassle. But in reality they are calling for help.

So do the following for your Warrior:

Check on them, whether in person or over the phone (because they might be crying in the corner like I was). Plan a get-together with them. If they aren’t up to the weather, go to their house and help them feel better. And most of all, don’t let them get lonely. Having to fight your own body is bad enough; don’t let them fight alone. Also try to understand them. Research Crohn’s, ask them questions, ask them what you can do for them. But understanding is the biggest part. Understand they are in pain, anxious and can’t hold their bowels.

Now reader, I can’t tell you everything. Ask your Warrior. Tell them you are there for them. So go find them and hug them (but not too tight) and tell them “I love you.” It will put a smile on their face.

Sincerely,

A Crohn’s Warrior

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

129
129
1
TOPICS
JOIN THE CONVERSATION

How I Experienced Anger in a New Way When Diagnosed With Crohn's

61
61
0

Since being diagnosed, there is one emotion I have experienced that has surprised me the most out of all the emotions on this roller coaster ride. That emotion is anger.

I have never been an angry person. I’m usually always pretty positive and happy. Even when I’m having a bad day, my first inclination is towards sadness, not anger. It really takes a lot for me to get to the point where I am angry. I very much consider myself an introvert, so I tend to bottle things up and then I need to let it out every so often. Blow off some steam. Not gonna lie to you – that is where curse words can be therapeutic! A lot of you may not understand that, and that’s OK. But it has always been quite a therapeutic tool for me. And when you are in a flare, you gotta curse at something. It’s just how it is.

One thing I have always been hard on myself. I hold myself to unreasonably high standards. I’m a perfectionist in certain aspects of my life. I always tend to beat myself up first before assuming anyone else is to blame. Needless to say, when I was diagnosed back in 2015 and I started experiencing this very real anger inside myself… I didn’t know what to do. It was very new to me – and it felt unhealthy. I was worried about what was going on with me. I was ashamed that I couldn’t put myself above it or let go of it easily. I expected better of myself. I did not like it and that made the anger even worse. Anger is not something I happily invite into my life, but apparently it was something I needed to go through at the time.

What do I mean when I say “anger?” I mean I was angry at myself and blaming myself for everything that was wrong in my life.

Why didn’t I do things differently? How could I have stopped this from happening? Did I make bad choices and this is karma biting me in the butt? Do I deserve this?? I forgot to take my pills! I can’t do anything right! Why do I suck at life??

MIGHTY PARTNER RESOURCES

I was just angry that I had to deal with this disease in the first place. I didn’t want it.

It didn’t stop there. I was angry at the outside world too. Here I thought I was dying and no one seemed to really notice or even care. How dare the earth keep spinning.

The world stops for no one and everyones lives kept going forward, while it felt like mine had come to a halt. People were having babies, getting married, buying houses, getting new jobs. The list goes on, while I felt stuck in a medical trap. How was I supposed to move forward ever again? I would never have a “normal” life again. It didn’t seem fair that everyone else got to just go about their daily lives like normal, like nothing even happened. I felt like all the people around me were taking the simple things in life for granted. They are lucky and they don’t realize how blessed they are to be healthy. I was angry at the world.

Sometimes the emotions would literally surge through me and I would have to physically let it out. I’d want to punch a pillow or just throw something across the room. However, I would usually just tighten my muscles, mainly the legs and feet. Sometimes I’d ball up my fists really tight too.I would tense them up as hard as I could and then release the tension. Usually followed by teary eyes and a very audible “RRRRrrrrrrrr” sound out of frustration.

The writer showing her feet tensed up.

Loss of control at its finest.

One night I’d just had enough. A ton of little things had been going wrong all day. I was at my breaking point and then I received a text message from family. They were very blatantly giving me a guilt trip, because I wasn’t doing what they wanted me to do. That was the final straw. I actually smashed a small nightstand to pieces in the basement.

I was completely ashamed of my behavior, but I felt better getting that bad energy out of me. Afterward, I just curled up in a ball in the corner and cried. My husband just quietly came downstairs to the basement to see if I was OK, and then grabbed a broom and dustpan. He cleaned up the mess. Once he saw I had calmed down he said, “Ya know, if you didn’t like the table you could have just said so.” Of course I laughed with tears and mascara running down my face as we hugged it out.

Looking back now, I know it was just a part of the process. I was grieving. My entire life had just changed and I didn’t have one bit of say in the matter. Old Jana’s life was gone. This new Jana was being re-born and she had to figure out what was going on. What was this going to mean? How exactly was my life changing? And that is all something that just has to be figured out as you go. Especially since this disease effects everyone differently. But I can say with certainty that I never in a million years thought that I’d see myself go through anger like that. It’s amazing what this disease will bring out in us. Just know that you are human, and it’s only normal to have an emotional reaction to a big life change like a Crohn’s disease diagnosis.

I sought professional help when I felt things got too hard emotionally. I was in therapy to work through a lot of the feelings like this that came up during my diagnosis. If you experience anything similar to what I have mentioned in this blog post, I strongly recommend seeing a medical professional and/or mental health professional. You don’t have to do this alone, and you shouldn’t. You deserve a better quality of life.

What is the most surprising emotion that you have experienced during your diagnosis?

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

Thinkstock Image By: Tatomm

61
61
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.