Jana Rosenberger

@gillendor | contributor
Jana is an IBD patient advocate and Crohn’s Quality-of-Life style blogger. She is empowering women patients by sharing the reality of this disease mixed with some silliness for good measure. Her blog, The Owlf Blog, touches on the emotional and social aspects of a life with Crohn’s disease and shares helpful coping strategies/tools for improving quality of life.
Community Voices
Amma

This Is NOT a Suicide Note I Promise

Sometimes I feel like nobody is here even when I’m in a room full of people. I feel like nobody is there. And it doesn’t make sense to me why life is a vicious cycle. The hurt, the struggle, the pain...it never ends. It doesn’t matter how desperately I want it to, it just never stops. When I think things are better and I’m finally okay, life turns around and slaps me in the face. And it hurts. It hurts so much. I’m tired of waiting for the other shoe to drop when I’m “happy” and I’m just exhausted. I’m exhausted but I sleep fine most nights. I don’t know. I just hate that people don’t understand but I don’t tell them so how are they supposed to know?

It’s all just bull. My life, my friends (who aren’t really my friends), my family life; I mean school and work are really all that seems to be going good for me at this point. I’m tired of fighting. I can’t do this anymore. This isn’t the me I want to be. I have tried so desperately to change but it hasn’t seemed to work. This has to end. I’m done with life. 

I mean, how do you get so lonely that you don’t want to do it anymore? How do you get so lonely that you just want to quit? How and when did this happen? 

#MentalHealth #Depression #Suicide #Anxiety #BorderlinePersonalityDisorder #BipolarDisorder

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Community Voices

Rough day - need support

My dad passed away this morning. This news was delivered to me by my stepmother in a very clinical and detached way. I had just spoken to him yesterday about going to visit this weekend, he had been in the ER the day before because he had stopped breathing but had been treated and sent home. He seemed stable and upbeat and looking forward to my visit. I’m heartbroken, I feel lost and unsure of what to do. I’ve been told there is no plan as of now and I don’t need to come home. All I want to do is help to honor my father in his passing and I’m being rebuffed and being kept in the dark, I feel so hopeless. #Depression

27 people are talking about this
Community Voices
Amma

This Is NOT a Suicide Note I Promise

Sometimes I feel like nobody is here even when I’m in a room full of people. I feel like nobody is there. And it doesn’t make sense to me why life is a vicious cycle. The hurt, the struggle, the pain...it never ends. It doesn’t matter how desperately I want it to, it just never stops. When I think things are better and I’m finally okay, life turns around and slaps me in the face. And it hurts. It hurts so much. I’m tired of waiting for the other shoe to drop when I’m “happy” and I’m just exhausted. I’m exhausted but I sleep fine most nights. I don’t know. I just hate that people don’t understand but I don’t tell them so how are they supposed to know?

It’s all just bull. My life, my friends (who aren’t really my friends), my family life; I mean school and work are really all that seems to be going good for me at this point. I’m tired of fighting. I can’t do this anymore. This isn’t the me I want to be. I have tried so desperately to change but it hasn’t seemed to work. This has to end. I’m done with life. 

I mean, how do you get so lonely that you don’t want to do it anymore? How do you get so lonely that you just want to quit? How and when did this happen? 

#MentalHealth #Depression #Suicide #Anxiety #BorderlinePersonalityDisorder #BipolarDisorder

17 people are talking about this
Jana Rosenberger

When We're Judged By the Covers of Our Crohn's Disease

Part of living a life with Crohn’s disease is being so often misunderstood. And more importantly figuring out a way to be OK with that. There will be judgement from others along the way. Obviously we can’t control what people think about us and how we live our lives. Not everyone you come in contact with will want to understand your situation, or care. It’s just a truth that I have come to realize after many recent encounters in my own life. There is a time for everything. A time for educating people and a time to not waste your words. Or waste your spoons, for that matter. For me, it can be hard when I can actually physically feel that judgement coming from others. It bothers me when I know people have the wrong idea about me and are judging me based on one piece of my puzzle. It can even get me to second guess my own decisions and life choices I’ve made, leading me to feel like I’ve done the wrong thing or like I’m a bad person because I don’t live up to this world’s expectations. People will make assumptions, it’s just how they are wired. But, just because people do judge, does not mean that they have the right to judge. Always remember that! I have to remind myself of that constantly. But…How are we supposed to not let it bother us, when we know there is going to be judgement? There is literally no avoiding it. The problem is when people are judging a chronically ill person’s life based off of what a healthy life is supposed to look like. When you do that, it won’t make sense and you are absolutely going to get the wrong idea. For instance, people will assume things like: “Oh, she stays at home all day and does nothing, she is just lazy.” “She doesn’t look like she is in pain, so she has to be lying.” “she doesn’t do chores around the house, does she do anything to help support her family?” “No one is always sick, I don’t believe her.” “I go to work when I am sick, why can’t she?” When in reality we aren’t just sitting at home doing nothing and having a ball. It’s more like a job in and of itself just managing a chronic illness and all the responsibilities that come with it. You and I both know that it is not the lazy vacation that many are picturing in their heads. So you see, we have to find some way to be OK with people thinking whatever they are going to think, because we simply can’t control it. If you are like me, you want to set the record straight and make sure people have the truth and right idea. I mean, who wants people thinking they are lazy? No one! And who wants to be made to feel that way? No one! But at the same time it can be very exhausting trying to explain your situation to someone! It’s complicated and hard to put it into words, especially short form. And not everyone deserves an explanation. And, I don’t know that it is truly possible for anyone to really know what we fully go through. Only we know our journey’s inside and out because it is happening to our body. We are the only one’s that live through it all, and feel what we feel. I used to be a healthy person, so I know the perspective from which most people are coming. They just want you to be healthy and positive. Also, if you are working, providing for your family and have an active social life, then all is good. That is how your life is expected to be…that is our cultural norm. You work, sleep, eat, and socialize. But when you have an illness that makes it incredibly hard to do any and/or all of those things…Simply put, you don’t “fit the mold.” You don’t meet the expectations. That fact alone immediately lumps you into a category that is very hard to comprehend. People’s minds will immediately go to a place of, “Why aren’t you doing things like the rest of the world…what is wrong with you?” Ladies and gents, I am here to tell you that we have become accustomed to a foreign way of living. “What do you do all day?” “Why can’t you get a job?” “Don’t you get bored staying at home?” “Do you take care of all the household chores?” “What is it that you DO do?” “You should get out more.” “Have you tried exercising and eating healthier?” “Do you have any big plans for the weekend?” “What do you mean you aren’t feeling well? I just saw you and you were fine.” “But you look healthy!” Yes, the chronic life is a completely foreign way of living to the average person. Most people get sick and then they get better. We stay sick and people don’t easily grasp that concept. They don’t want you to be sick, because that is a negative and they generally get tired of hearing about it. Also, People expect to see sickness on a person. So when they don’t see that you are sick, they can’t fathom it. They may think you are lying or assume you are just lazy. Granted…in a lot of cases you can look at someone and know they are sick – like a cold tends to have very obvious physical symptoms. That is not the case with Crohn’s disease at all. The symptoms are on the inside for the most part. You can’t see what is going on inside the digestive system and the effects that it has on the whole entire body, because mostly it’s all on the inside. And let’s get real, outsiders won’t necessarily see the worst of our disease, because personally we aren’t going to let them see it. Yes, there is a lot that goes on in the bathroom, but that isn’t what I’m talking about! I doubt any of us want to be around people when we feel and physically look horrible. So it stands to reason that people aren’t going to see it, unless we let them see it. We are either gonna stay at home or cover it up with clothes and makeup. People will likely be confused when you are walking around “like normal” when you say that you are in a lot of pain. With all things that involve chronic pain – you get used to it. That means finding a way to go on living your life with that pain. I’ve found that my pain tolerance has improved over the years. I can be sitting and chatting with someone at a level six or seven of pain. It’s just become such a norm for me, but the average person can’t understand how that is possible. To them, that level of pain might be what sends them into the ER. It’s an alien concept to a healthy person to just live with the pain, because that is counter intuitive. Yes, normally, you figure out what is causing it so it can go away. But when there is no cure…you gotta deal. Another point I’d like to bring up – how Crohn’s disease looks and acts differently on each individual. Each journey with this disease is so unique. So there shouldn’t be an expectation for what Crohn’s “looks like,” at all. My inflammation may be in different parts of the body than yours, producing different symptoms and complications. Some patients have years of remission while others like myself may only experience small periods of symptom-free time. Some may be constantly hospitalized and need multiple surgeries, others may get away with a simple over the counter medication. It is literally all over the board with this disease. That being said, the general public will compare and expect our journey to look like their friend’s journey with Crohn’s disease. It’s gonna happen. When you don’t know how to understand something, you do your best by comparing it to something you already know, right? It’s just how it is. So again, educating people can be helpful at certain times like this. After experiencing a lot of these judge-y situations recently, I have to tell you that I don’t have an answer for you on how to be OK with it. Perhaps it just requires time or a level of “not caring” that I’m just not at yet. Maybe I just still feel a lot of guilt over things that aren’t in my control. Perhaps the old Jana, “healthy Jana,” is being too hard on chronic Jana. Both Jana’s have been known to do this. Either way, I have been struggling with this a lot lately and if you have struggled with this too, then at least you know you aren’t alone in your feelings. It is very much a part of this journey with inflammatory bowel disease and I’m sure many other chronic illnesses too. While I can’t offer you an answer for how to be OK with the knowledge that people will judge us, I can offer you something else – a judgement-free zone. I’m writing this to help provide ongoing support for fellow Crohn’s disease patients and others with chronic illnesses. Always feel free to share your own experiences here without fear of judgement. While you may feel that the outside world just doesn’t understand, that is not the case here. We are all just trying to make it through this journey in the best way we know how. With that said I will leave you with these thoughts… Be comfortable in your own skin. Don’t be ashamed of the life choices that you have had to make based on your illness and your health. No one can fault you for that. Know that you didn’t make those choices lightly and that there was good reason behind each choice you made at it’s time. Don’t let someone else’s expectations and opinions cloud your own sense of judgement about your life. You are the only one that has to live your life, so you have to do it the best way you know how. If you have struggled with similar situations and have figured out how to deal with them, I would like to hear your comments below. Do you have a phrase that you use when people ask you certain questions about your life? Let me know! Getty Image by mheim3011

Jana Rosenberger

Coping Is Difficult for the Perfectionist With Crohn's Disease

It occurred to me recently that a lot of the issues I have coping with this disease may stem from the fact that I am a perfectionist. It feels as if my Crohn’s disease and my inner perfectionist are constantly butting heads each and every single day. I want to cover the different aspects of being a perfectionist and how that has created coping problems for me personally. Identifying the problem is a huge step in solving it. So I’m hoping by sharing my struggle, that someone else might have an, “Aha!” moment like I did and begin coping a little easier. So let’s get into it. 1. Expectations Expectations can be a major buzzkill for almost anyone, but for the perfectionist it’s usually more intensified. You want things to go a certain way and they often don’t. I thought life was going to be pretty straight forward. I figured that by age 32, I’d not only have my path figured out but I’d be set. You know – set it and forget it! Smooth sailing. And it was for about the first 30 years of my life, until inflammatory bowel disease (IBD) happened. Having Crohn’s disease completely upset my expectations for how I thought my life was supposed to go. I couldn’t work my dream job anymore, no matter how I rearranged my work schedule. I had to cancel a lot of social events I said I would attend. I spent most of my time in the bathroom, visiting the doctor, getting labs done and sorting out all the logistics of disease management. I started beating myself up for not living up to my own expectations. I didn’t know what to do to get my life back on track, get back to work, get off the toilet and so forth. I was constantly shooting for perfect – but I didn’t realize I was inadvertently shooting for perfect health. Perfection includes being in perfect health in order to achieve that higher standard. In my opinion, it’s impossible to achieve perfection. It always has been and always will be. When you live in a weakened state all the time, like with a chronic illness, how much more impossible does perfection become? Talk about placing an unreasonable expectation on yourself! Logical Jana wants to shake the inner-perfectionist Jana and yell, “Wake up! You have a chronic illness! We don’t have a cure yet, and until we do, you cannot expect perfection and you cannot expect perfect health!” My unreasonable expectations cause inner turmoil and that can and will manifest itself physically. You’ve heard people say, “You’ll worry yourself sick.” Well, it absolutely does happen. My worst flares that put me into the hospital were products of too much mental stress. I have to adjust my expectations before it gets to that point. So, logical Jana set some expectations that are actually realistic, given all the challenges set before me with my IBD. Reasonable expectations and a concerted effort to stick to them! 2. Control When things are going as planned, you tend to feel like you are in control. Keyword – feel. I got the job I went to college for and I was happy as a clam doing my thing for about eight years. Like I said before, smooth sailing. Then a tornado came through by the name of IBD and messed it all up. It felt like everything I’d worked so hard for was just tossed aside like trash. It’s almost as if someone, somewhere decided, “Hmmm…she seems pretty content with where she is. Psh, we can’t have that! Give her a real challenge!” My very literal life’s work was taken from me and I had to start over and re-think what I wanted to do. I essentially had to start from scratch. All the other trials I have faced during my 32 years of living were just mere child’s play compared to the storm that is IBD. Now, such a situation can be hard for any person to digest. No pun intended. And I mean that all inclusively. So many people think they have the mental fortitude of a superhero and then boom, they get a reality check. It’s normal to find it difficult to cope! It’s no fun when you have the rug pulled out from underneath you and you’re laying there on the floor wondering what the hell just happened! I know, I’ve been there. But…we do find a way to cope. It just takes some adjusting. The problem here for me was thinking that I was in control from the start. I was not and I’m still not. I strongly believe that no one is in control of their lives, they just think they are. Something could happen at any given moment that could completely change everything – a car wreck, a diagnosis, a death, a new family member, a cross-country move, a job change. That’s exactly what happened to me, and likely it’s happened to you or someone you love since you are reading this. So, for me, life dictates that we are not as “in control” as we all think we are. We can make plans and have great intentions, but at any given time, something could come up. Managing my disease has taught me this fact over and over again. My body decides when it needs to go to the bathroom and I need honor that. Nausea, vomiting, abdominal pain – all those things are something the body does that I don’t have control over. There is no arguing with the body. If it needs to get things out of the system, it is going to make it happen when and where it needs to. 3. Blame Naturally, I’ve always been really hard on myself, comes with the perfectionist territory. I have high expectations and standards because, you guessed it…it needs to be perfect! Or at least as close as humanly possible. I expect things to go smoothly, and when they don’t, it’s my fault. I always blame myself for not seeing the possibility of that disruption. I should have known or I should have thought of that! See if this sounds familiar to you: “This could have been avoided. If only I had done ___ ahead of time, I would have been prepared and this never would have happened!” “I’m such an idiot for not seeing this coming. I should have known!” Overly focusing on the past doesn’t help. It’s true that we can learn from our mistakes, but we shouldn’t dwell on them to the point where it causes us severe anxiety. That stress, which you are essentially putting on yourself, can have physical consequences as I mentioned before. I say this specifically because I know for a fact that stress triggers flares for me. Not everyone has the same triggers, but I have a feeling if you are a perfectionist it definitely plays into your disease. Naturally, avoiding stress (to the best of my ability) helps me manage my disease best. Life is already stressful enough so why make it worse, right? If the stress and anxiety weighs you down, and actually interrupts your day or ability to get things done (like it does for me)…that is a serious issue. This is when I go to a professional and get help. By myself, I have never found a way to just quit blaming myself. I can say I’m gonna stop blaming and beating myself up, but then my brain doesn’t listen. It’s like the brain just gets stuck on repeat. Old habits die hard. So I seek professional help when this becomes a problem. I find that it helps me to talk it out with someone and get to the root of the issue at hand, which may be different for each person. I tend to blame myself for things out of my control, which goes back to my previous point on “control.” I helps to know why your brain works the way it does. I know, I know…it sounds like psychological stuff you likely don’t want to explore, but believe me it really does help! Once you figure out the cause of the problem you are closer to fixing it. Which is a great segue…. 4. Problem Solving Being a perfectionist, I’ve found it’s harder for me to get past the cause of my uprooting. I find it real easy to focus on what isn’t going according to plan because of my disease. “Why me? If it weren’t for this dang disease…everything would be fine!” The disease is the poopin’ problem! Literally! And when I know the problem, I want to get rid of it, solve it and move on. Don’t we all? But with IBD, I can’t chuck the problem, because it’s here to stay for the rest of my life. And I can’t solve the problem because there is no cure. So I have to change, I have to adapt. Instead of cussing at my Crohn’s, I could be using my energy to find ways to adapt to my new situation and make the most of it. So that’s what I started doing as soon as I accepted that the problem wasn’t going to go away. I’m still in that process, it doesn’t happen overnight, but I think I’m doing pretty good considering it’s only been three years since my diagnosis. Here is how I look at it now: OK, so I can’t work my old job, what else can I do? I turned my focus onto other ways I could be supporting my family. I really enjoy spending time with dogs, so I started dog sitting when I had the time and felt well enough. Another common problem? OK, so I’m stuck on the toilet again for an hour, what can I do about that? Well, I could be reading a book to learn some new things, since I’m essentially sitting for an hour! Make the most of it right? And it kinda takes your mind off just sitting there on the pot. Adopt a, “What can we do,” mentality, instead of, “what can’t we do.” And that’s where I’m at now. I try my best to put my limited energy into positive things going forward. I don’t want to waste my energy on negativity, judging myself too harshly or any of that. And I constantly have logical Jana remind me of these new expectations that I set for myself. Getting down to real basics here – as humans we are, by nature, imperfect. Expecting perfection out of something that we know to be imperfect is just ridiculous. It ain’t gonna happen! You are gonna get nowhere fast with that approach. I know from experience! I’ve accepted that perfection will always be unattainable. My life experiences have taught me this, time and time again. Knowing perfection is out of reach, allows me to be kinder to myself because I’m not setting unreasonable goals as often. My standards are high, but they aren’t unattainable. Everything I expect of myself needs to be something I can expect of a human…not superwoman! So, ladies let’s be honest with ourselves. In case no one else has told you, I’m gonna do it right now. You aren’t an idiot or stupid because you can’t predict the future. You aren’t to blame for every little thing that goes wrong in life. You are human! Moms are you listening?!? You don’t have to be superwoman! You will probably never hear anyone else say this, but consider lowering the bar a little. Put your goals and standards at a reachable level if you tend to classify yourself as a perfectionist. Adjust, tweak, change, but above all just be realistic with yourself. There may be days where your only goal is to put on pants! Hey, that is attainable! And you are allowed to get excited over it too! I promise you the world won’t come to an end if the dishes don’t get done today and the laundry sits in the dryer because you spent the day running back and forth to the bathroom. It’s much more important that we care for our body and mind, so that all those other things can eventually get done. Do you consider yourself a perfectionist? If so, comment below. Let me know if you think it is a gift or a curse.

Community Voices

What's the BEST thing a friend or family member has ever done to help with your #ChronicIllness ?

Sometimes, people think the most helpful thing to do for a friend with health challenges is to give them medical advice or tell them to "stay positive!" But there are better things friends can do. I want to know what a loved one has done to support you -- let's show what's REALLY helpful!

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Community Voices

I suffer from depression & anxiety. any tips to make forcing myself out of bed to go to school easier? #Anxiety #Depression

I lack the will to get out of bed every morning, the struggle is so bad, it's like a million thoughts hitting me all at once that the noise and mental pain makes me feel nauseous and miserable. it's like every second of just existing hurts. teachers are pissed that I'm missing school so much and getting average grades due to my brain fog (my grades used to be really good). my family keeps on telling me I'm a burden. I have no joy or passion in life anymore, and just feel like giving up. I could really use any source of encouragement right now. I really want to stay alive and experience life :(

6 people are talking about this
Jana Rosenberger

21 Songs That Have a New Meaning After My Crohn's Disease Diagnosis

Recently, I was going through my music to create a new playlist. As I was sorting through my music, I was finding that some of these same old songs I’d listened to a million times now held new meanings for me. Different lyrics were calling out to me and the songs had a new impact. Why? Because there had been one major change in my life and within me. I was diagnosed with an incurable life long disease — Crohn’s disease. That changes a person and your perspective on life. I personally went through a grieving process for the life I used to have and the person that I once was. My life was changed forever. The frustrations were overwhelming, while also experiencing a multitude of medical challenges, on top of mentally coping with the diagnosis. Stress, both physical and emotional, felt insurmountable. I’m sure my fellow chronic illness friends know exactly what I’m talking about. We all go through such a fight for our lives and happiness. It’s why we call each other warriors. Here is a list of 21 songs with lyrics that I now see in a completely different light. Each song listed below has lyrics in it that speak to some aspect of this war that we are fighting. These are just a few of the song lyrics that I have found describe some aspect of my journey. I’m curious to hear if they speak to you as well. 1. “ When I See You Smile” by Bad English “Sometimes I wanna give up, I wanna give in I wanna quit the fight Then one look at you baby And everything’s alright” 2. “ Whatever it Takes” by Imagine Dragons “Break me down and build me up Whatever it takes” 3. “ Adventure of a Lifetime” by Coldplay “Under this pressure, under this weight We are diamonds taking shape” 4. “ Hold Me Up” by Conrad Sewell “In a minute you can realize you lost it all In a second you were always there to break my fall Till you came and saved my life In the lonely hour In the lonely hour Oh I’m praying for some help I can’t do it by myself, need you now Need you right now” –> 5. “ Saving My Life” by Gorgon City “Save all of your timing Save all you’ve been hiding Save all your energy, yeah Save all you’ve been dreaming Live life for some meaning Save your destiny” 6. “ Good As Hell” by Paul Rey “I feel like screaming till my lungs have no air. Feel like running, though I don’t know where. Feel like laughing till I’m drowning in tears. For the first time in years I feel… I feel good as hell…” 7. “ Changes in Latitudes, Changes in Attitudes” by Jimmy Buffett “Through all of the islands and all of the highlands If we couldn’t laugh, we would all go insane” “Visions of good times that brought so much pleasure Makes me want to go back again” “Oh yesterdays are over my shoulder, So I can’t look back for too long. There’s just too much to see waiting in front of me, and I know that I just can’t go wrong with these… Changes in Latitudes, Changes in Attitudes”   8. “ Breath In, Breath Out, Move On” by Jimmy Buffett “According to my watch the time is now Past is dead and gone Don’t try to shake it just nod your head Breathe In, Breathe Out, Move On” 9. “ The Scientist” by Coldplay “Nobody said it was easy It’s such a shame for us to part Nobody said it was easy No one ever said it would be this hard Oh, take me back to the start” 10. “ This Is War” by 30 seconds to Mars “It’s the moment of truth and the moment to lie And the moment to live and the moment to die The moment to fight, the moment to fight, To fight, to fight, to fight” 11. “ Roll With the Changes” by REO Speedwagon “So if you’re tired of the same old story Oh turn some pages I’ll be here when you are ready To roll with the changes” “You know you got to Keep on rollin’”   12. “ Come Sail Away” by Styx “I’ve got to be free, free to face the life that’s ahead of me” “But we’ll try, best that we can to carry on” 13. “ Fight So ng” by Rachel Patten “I’ve still got a lot of fight left in me” 14. “ Ordinary” by Train “Whose eyes am I behind I don’t recognize anything that I see Whose skin is this design I don’t want this to be the way that you see me I don’t understand anything anymore” “Can you save me from this world of mine Before I get myself arrested with these expectations” 15. “ Times Like These” by the Foo Fighters “It’s times like these you learn to live again” 16. “Breakout” by The Foo Fighters “I don’t wanna look like that. You know you make me breakout. You can see this on my face, It’s all for you. The more and more I take, I break right through” 17. “Best of You” by Foo Fighters Has someone taken your faith? Its real, the pain you feel The life, the love You die to heal The hope that starts The broken hearts You trust, you must Confess Is someone getting the best, the best, the best, the best of you? “I’ve got another confession my friend I’m no fool I’m getting tired of starting again Somewhere new” 18. “ Little Talks” by Of Monsters and Men “There’s an old voice in my head That’s holding me back” “Soon it will all be over, and buried with our past We used to play outside when we were young And full of life and full of love Some days I don’t know if I am wrong or right. Your mind is playing tricks on you my dear” 19. “Don’t Fear the Reaper” by Blue Oyster Cult “All our times have come Here but now they’re gone Seasons don’t fear the reaper Nor do the wind, the sun or the rain, we can be like they are” 20. “ Carry On Wayward Son” by Kansas “Lay your weary head to rest Don’t you cry no more”   21. “Music to My Soul” by CeeLo Green “Even in darkness Despite what was wrong, everything turned out alright” Have the songs changed? No. The person listening to them has changed significantly. I always say that after I was diagnosed it felt like the old me was dying, which meant that a new me was being revealed. Well, that “new me” is honestly a better, much stronger version of myself. I’ve been through a lot, but it’s taught me a lot too. And I’m grateful for all that my disease has shown me in life. The good and the bad, I have learned from it all. Listening to these songs and hearing those lyrics that pop out to me help me to remember my journey. They validate it, and help me to keep on going. The war isn’t over, but I’ve got the skills to keep fighting now! What songs and lyrics speak to you and your journey? We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: waymoreawesomer

Jana Rosenberger

Chronic Illness: Being So Low on Energy That Your Brain Shuts Down

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.” 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. 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.