woman looking ahead with sun rising

Some may look at that title and think that wanting more than what you have is a bad thing, but not me. It is the thing that keeps me going. It is the thing that has provided me with drive and determination.

It is what made me travel the world. It is what made me come back. It is why I waited to marry until I met the perfect man for me. It is how I was able to graduate, 10 years post high school, Magma Cum Laude. It is why I left one entrepreneurial dream to set out to an unknown career path, which led to my most favorite job I’ve ever held. It is why I had three amazing kids in less than four years. It is why I decided to leave my most favorite job for a life home with the kids. It’s why I wanted us to move in favor of lifestyle over corporate ladder.

It is also why I never hesitated to use supplemental oxygen. It is why I utilized numerous paths of healing, from the best modern medicine could offer to meditation and acupuncture. It is how I dragged myself to the gym when it felt like an elephant was sitting on my chest. It is how I can wipe away my tears and smile at my children. It is how I survived with a cannula, prednisone “moon face” and a humped neck and pregnant-looking belly walking slower than the slowest poke in town with a complete lack of embarrassment. It is how I asked for all the help I could get. It is why I was able to withstand three days of steroid withdrawal symptoms every week for months on end. It’s why I do not hesitate to go to the ER or call on a doctor for advice immediately. It is why, when we went to Disneyland, I ordered and utilized a scooter and registered as a disabled person. It is why I still go outside, even though I have to cover myself head-to-toe to keep out of the sun. It is why I will say yes to a social invitation and also not hesitate to cancel at the last minute of needed.

I always want more out of this life. As a close friend and confidant recently wrote, “Life is so very rich, and I find myself wanting more. More time to witness the lives of those I love, more adventures, more experiences. Always. Wanting. More” I absolutely couldn’t agree with her more and she inspired this long-overdue post. I was blessed with a pretty awesome summer filled with a Disneyland adventure, hosting my dad’s 70th birthday week at our home and various fun-filled days with the kids and evenings with my husband. It wasn’t without its struggles or its medical issues. But it was a happy summer. It was more… more than we had last year and more than I expected it could be. I don’t always have an end goal in mind, but wherever I am… I strive to go to the next level. Some days that is to get out of bed, or to take a shower, or feed my kids. Other days… it’s getting to the gym, cleaning the house, or doing a favor for someone else for a change. Sometimes it is just to hang on the the little shred of sanity I might have left in the day. But I’m always wanting… always striving for more.

Unbelievably, that wanting and subsequent striving has gotten me places that I didn’t know were even possible. I’m no longer using oxygen. I did a muscle retest and the effort I’ve put in is registering improvements. I’m going longer periods of good days. I ran… I ran without the use of oxygen and my children had a look of shock, pure joy and utter confusion and it was a glorious 30 seconds. And it doesn’t matter it was only 30 seconds… it only matters that it was more than before. Once I could barely walk across a room and now I ran. No matter what state you are in, you may not be able to be who you once were or have what you once had or do what you once were able to do… but I think you can always look at any moment and want more and do something to get more out of this life.

Follow this journey at Living and Breathing Relatively Unscathed.

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Thinkstock photo by m-gucci

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Fine.

I’m convinced there’s not another word that could be taken to mean so many different things. When I go to the doctor, that’s often all I hear. “Your labs are fine.” You’re fine. Everything’s fine.

On paper, I’m fine. My rheumatologist said he doesn’t even need to see me again for another year. Obviously to him, I’m fine. I am starting to think that maybe we accidentally stumbled upon the least of my problems (Sjogren’s syndrome) and have yet to discover the bulk of my issues. Constant stomach problems and continued weight loss, but I’m fine! No worries here.

And yet, “fine” is my favorite thing to say when people ask me how I am doing. I don’t know exactly why I do it on any particular day, but here are my theories:

1. Comparatively at the moment, I really am fine. “Fine” is such a relative term. My response may really mean: Compared to having my insides revolt against me the last three days, today I’m fine.

2. Much of the time, people don’t want to know the real answer to the “how are you?” question. When I have been honest in my response, it makes most people incredibly uncomfortable. Very few people have a clue what to say at that point, and I cannot blame them. Some feel the need to say things like, “It will all get better soon,” “The sun’ll come out tomorrow!” (I may have made that one up) or my personal pet peeve, “Well, you look good!” FYI – that last one is a terrible thing to say to a person with a chronic illness. It may not sound like it in your head, but in ours it’s as if you don’t believe we are really sick. Why the heck anyone would make up a debilitating illness is beyond me.

3. Some days, if I tell you the real answer to the question, there is a good possibility I will burst into tears, making us both incredibly uncomfortable. I am trying to appear much stronger than I am in weak moments, so bear with me!

4. I do not want to see pity in your eyes. There is a very fine line between showing understanding and pity. The few people who really listen and understand have meant more to me than they will ever know. They also don’t see me as the poor, pitiful, sick Karina. They remind me in my darkest hours, when I have trouble believing it myself, that I still have something, however small, to offer the world.

5. Sometimes I want people to believe that I am fine. I simply want to be normal again. I want to be part of the land of the living, where people go to work, attend social events and don’t spend every waking moment thinking about what’s going on in and out of their bodies. I want to have a life outside of this illness!

6. I want to believe I am fine. There’s really something credible to the theory that the status of the mind affects the status of the body. There have been numerous times that I’ve been convinced I will never get better. Of course, if I have that mindset I won’t get better! I have to believe that one day this will end, either in this life or the next, so my “I’m fine” response may mean that I’m trying to convince myself as well as you.

So, what are you supposed to do with my “I’m fine” response? That is an excellent question and sometimes I’m not even sure I know the answer. I guess I just want you to know that sometimes “I’m fine” can be taken at face value and sometimes it may say so much more. If you truly want to know the real answer, if you have some time to listen and maybe a pocketful of tissues just in case, ask again. If I trust that you really want to know, I may tell you. But don’t do this unless you really want to know. I cannot handle baring my soul to you if what I get in return is cheap, flippant responses, dismissing everything I have just said. It’s OK to not know what to say. A silent hug speaks much louder than empty words. Also realize that at the moment you ask, I really might be OK, so don’t be offended if my answer stays the same! No matter what I say, please know I love you for asking but I also may not be ready to tell you.

This post originally appeared on Beautiful Rubble.

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Thinkstock photo via max-kegfire.


Friends and acquaintances often ask “How are you?” as a casual greeting — just something you say when you meet someone. And though we may automatically respond, “I’m fine!” or “Good, how are you?” sometimes we’re not being completely truthful. Especially when you live with chronic health challenges, you might not really be “doing fine” — but you may not feel comfortable discussing the health challenges you’re actually dealing with at the time.

But we want to know how you really are, and we want others to know what’s really going on with you, because you deserve credit for the challenges you live with every day. So, we asked our Mighty community with chronic illness to share what their honest answer would be if someone asked, “How are you?”

Here’s what our community told us:

1. “The honest answer is I don’t even really know. Each day is different, really each hour is different. One minute I will feel great then the next I am in so much pain I just want to lay in bed and cry. My body can be so unpredictable it’s exhausting to try and keep up. I’m also so frustrated with my body because I want to do so many things but my body is keeping me from doing so. So instead of not knowing how I’m feeling, I am basically feeling every emotion imaginable all at once. That’s how I am.”

2.It’s frustrating when people ask as most are only asking because its just a platitude, they don’t really want to know. But I will tell them, ‘It’s like wearing a lead suit, you are so exhausted you have to drag yourself around.’ Another one I have used is, ‘I am a bit like the old Holden car, the body is good but the motor is clapped out.'”

3. “I’m tired. And not the type of tired that is relieved by sleep. I mean I’m emotionally, mentally, and physically drained from living and fighting in a body that wants to destroy me. And all I ask is that you try to understand that I’m trying my best to get through this.”

4.I honestly would say ‘I’m fine’ while screaming on the inside ‘I feel exhausted and tired of being in pain.’ They are days I feel like I could crawl out of my skin.”

5.Tired, fed up, down beaten and battered. Stressed, in agony and defeated. But on the way up. I have somewhere I can call home and a fantastic man I can call my partner. I don’t have much money so that’s always hard but we’ve got each other and I am almost coping. Sometimes. Maybe tomorrow will be better or worse but we just have to keep plodding otherwise there won’t be a tomorrow to look forward to. A cuddle always makes it better.”

6. “I am surviving. I am in a body that betrays me every day. The thing is that my answer can change from moment to moment. The pain is always there. It’s just at different levels from moment to moment.”

7.I’d say that while I’m exhausted of the pain and fatigue and uncertainty, I am still grateful to those who genuinely care enough to ask me how I am and that while I feel crappy often I’m confident knowing I’m doing the best I can.”

8. “I’m tired. I’m frustrated. I’m stressed. I’m in pain. I’m cranky. I feel constantly inadequate. I feel jealous of everyone around me who are capable of doing things I use to be able to do and no longer can… And people telling me ‘we’ll get through this together,’ or ‘it will get better’ seems almost patronizing. It sounds like a greeting card… You can check out of my illnesses whenever you want. I am stuck with it forever.”

9. “Scared, exhausted, weak and frustrated but still fighting, still going strong, being optimistic and never ever giving up! Excuse my fluctuating mental state, but I’ve got this with your support.”

10. “I’m not exactly great. My body is full of pain, and I tired of pretending to be stronger than I feel. I hardly rest so besides pain exhumation has set in. But I’m alive, so I guess I’m decent.”

11. “I’m overwhelmed with simple chores. My body has aches and pains I’ve never experienced before. I’m tired even after a long nights rest. I want to go to the park, I want to be an active toddler’s mother. Some days I’m not. Some days she knows mommy doesn’t feel good, and that day I just can’t.”

12.I’m in a much better place than I was a few months ago, but that’s because of how I choose to look at my life, not because my life has become easy.”

13. “My body is in excruciating pain while I pretend to smile. I’m so tired from fighting pain and tired of battling. Then comes the no sleep on top of that. I’m tired of pretending things are good.”

14.I’m exhausted and not just physically but emotionally. I hurt every day and no, nothing makes it go away. I’m hurting emotionally too because I can’t do everything I want to do. I’m tired of hearing if you just do this you’ll feel better, I’ve tried it I’ve done it all in hopes of feeling better but it’s not that simple.

15. “Honestly, I feel awful. I’ve been in the middle of a flare up for a month and half now, and I’m just desperate to feel better! I’m trying to keep it together and seem as normal as possible, but I’m struggling.”

16. “I would thank the person for actually checking in with me to see how my day had been rather than assuming they all suck equally or that because I am pleasant therefore nothing was awful about the day. Depending on the day I would add that I am ‘in progress.’ Sometimes more. Sometimes way less. And having someone to understand that any teeny little thing that brings happiness or purpose is better when it’s shared is what would help me master the days that beat me down.”


It is no secret to those that know me that I had a major operation in April 2015. If you don’t know that I had my rectum removed and my anus sewn shut, then it’s likely that you haven’t been my friend for very long, because one thing I am not is secretive about it. It is also no secret that I have been taking very strong prescription pain medications, which I am currently trying to wean myself off of. My life is an open book. I share stories and photos regularly online about what is happening in my life on a day-to-day basis.

Except it isn’t, and I don’t.

I share what I want people to know. I post the photos that I want people to see. I tell the story that I want people to hear. I am “open” and “honest” to a degree.

About a year ago, I shared a photograph entitled “Batch cooking.” It was of an array of dishes that I had spent the day preparing for my family and a friend who had had a premature baby. There was an obscene amount of food. This photo gained likes and comments galore. It told a story of a woman who has her shit together, so much so that she can cook two weeks worth of food in one day.

That picture also tells another story. The story that I don’t tell, don’t share: the story of a woman who cooks two weeks worth of food in one day because that is possibly the one day out of the month that she will be well enough to cook. So she fills her freezer.

In the past 21 days, I have cooked from scratch five times for my partner and I. Our main evening meals have consisted of pre-cooked meals from the freezer (some batches cooked by me, others by the supermarket), takeout, sandwiches, cereal and porridge, cheese on crackers, chips, biscuits, yogurt or nothing at all.

My children have a home-cooked meal most evenings; however, they mainly consist of things that I can take from the freezer and throw into the oven: pre-cooked lasagna, sausage rolls, chicken nuggets (homemade, batch-cooked and frozen) or pasta with bacon pieces and tomato sauce, always cooked in bulk so they can have it for more than one main meal. Convenience isn’t a luxury, it’s a necessity. And I have learned how to make healthy, child-friendly convenience foods in bulk. I’ve had to.

My partner is not so fortunate or well looked after.

It also hasn’t been a secret that I have started performing again. I appeared in Jesus Christ Superstar last April, Rent in December, I wrote and performed my play, Kat’s Bag of Crap, in February and I am appearing in Bad Girls the Musical next week.

What I haven’t shared is my partner’s reluctance in my committing to all of these shows. He was worried, and continues to worry, that I have taken on too much. That I wouldn’t be/am not well enough/am not strong enough to manage the rehearsals and performances.

Of course I fought him on it. Insisted that I was fine. That I was getting better. That I could cope.

He was right to be concerned. Because I am barely strong enough and managing. I am holding on by the skin of my teeth.

Although I am making it to and through rehearsals and am enjoying myself immensely, I am also in a considerable amount of pain during and after each and every one.

The thing is, I am used to being in pain. On any given day, my pain level ranges from two out of 10 to seven out of 10. Every. Single. Day. My baseline, my normal pain level, where zero is no pain, and 10 is unbearable, take-me-to-the-hospital-now-because-I-am-about-to-die kind of pain is three out of 10. This is with two different types of kickass opiate pain relief I am constantly on. I am almost never pain free. When I hit six out of 10 I take something to help me; otherwise, I just get on with it. Pain is normal for me.

I am currently in bed, doing nothing but typing, and my pain is at a five, but I’m happy because an hour ago I was at six. So yes, I am rehearsing three times a week. Yes, I am taking part in a show. I am also taking opiate pain relief before, often during and always after each and every rehearsal and performance.

I haven’t told anybody this truth. I am petrified that I won’t be able to make it through the eight performances I have to do next week (11 if you include dress and technical rehearsals). I know that once I am on the stage, adrenaline and excitement will get me through each show, but I have to make it out of my bed, into the shower, out of the house and to the theater before the adrenaline can do its job. Today, I have struggled to get out of bed to use the bathroom.

Another non-secret is that I am looking better than I have looked in decades. My exterior is banging right now. Curves in all the right places, hair behaving, tummy decreasing. I have a waist. My levels of narcissism are rising at an alarming rate. Constant selfies flooding your timelines of me in lovely dresses, off to church. What I don’t share is that I dress up, go to church, leave church, go to my Mum’s house, change back into my pajamas and sleep on her sofa while she cooks lunch. I wake up, eat, sleep some more, drive home, give my children a light dinner, put them to bed and go back to bed myself. Every single Sunday I spend 9:00 a.m. – 12:00 p.m. looking fantastic. Three hours. That’s it.

I have had to have a nap every single day this week. How my partner puts up with me is anybody’s guess.

With all that said, I maintain that I am getting better. I am happier than I have been in years. My good days may not have increased in quantity. I may still spend a third of the year in my pajamas, unable to function due to debilitating fatigue. I’m not able to shower, dress myself, cook for my family, leave the house or lift my head from my pillow. Even though I often still have to use a commode in my bedroom to urinate because the stairs are too much for me to manage… Even though my partner has to remind me to shower and eat on the days when all I can do is sleep… Even though my bedroom is often the only room I see for days at a time…my quality of life on my good days is the highest it has been in decades.

I am no longer simply surviving, I am living. Sadly though, it hurts to live.

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Thinkstock photo via tommaso79.


Picture this: You wake up one morning and put you feet on the floor. Suddenly you look down and see that a ball and chain have been shackled around an ankle. For the sake of this exercise, we’ll pretend this isn’t too far out of the realm of comfort and you do not need to search the house for burglars. So, you get up and brush your teeth, shower, eat, whatever your morning routine is.

By the time you head to work you are already noticing the pain from dragging this shackle around, but there isn’t anything you can do about it, so you just keep going. At work, coworkers notice your ball and chain immediately and ask if they can help. Your mother wants to take it from you and wear it herself. Your friends want to just lift it for a while to give you a break. But those aren’t options because this shackle has been given to you, and only you.

You make it through your day the best you can and by the time five o’clock rolls around, you can’t wait to get home and massage your poor aching leg and back, since the pain has creeped farther up your body. Maybe even take a nice hot bath.

But, you get home, and everything still needs to be taken care of. Bills still need to be paid, children need fed and be helped with homework, housework and animals need tended to, spouses still need to communicate. That’s when you say, “I’ve really done all I can do today and I need to go lie down.” That’s the moment the ball and chain wins for the day.

Now imagine that this is your day every single day of your life.

The ball and chain you wake up with each morning may vary in size, but it is always present. There are days when the shackle won’t allow you to get out of bed and other times you can manage to work and still live life with relatively little thought given to your companion of iron.

The coworkers that were so alarmed and willing to help out in the beginning are now just getting frustrated that you still aren’t rid of the thing and they’re resenting the fact that your work may be slower. Your friends have dwindled to just a few when the others got fed up with your last minute cancellations and the ones that remain are generally supportive, but without dragging your chain, no one else can truly understand. Your family is frustrated because they want the person you used to be back.

You now feel like a huge burden to everyone around you. You feel guilty for needing help, guilty for being this person with this shackle, guilty that you haven’t been able to reach the goals you set out for yourself…And for being financially dependent on someone else because that job of yours just became too much to handle. The ball and chain just got too heavy to heave all the way to the office, deal with it all day, and then drag it back home.

Well-meaning strangers may even ask you if you’ve tried things, like a drill or screwdriver, to remove the chain.

Now imagine that ball and chain is invisible.

To everyone else you look totally healthy. You are the same person as before and are expected to perform as such. Reaching understanding from those you come into contact with is difficult because the only thing they have to go on is your word. They may say you don’t look like someone with an invisible ball and chain. Or that it must be something you’re doing because invisible shackles don’t exist.

They may say that its in your mind and a good attitude is all you need. They may tell you that you can heal your body by going vegan, paleo or gluten free and and the list goes on and on. Doctors may say, “Hm. Yes, it looks like you might have an invisible ball and chain, but its not one I’ve seen before. You’ll need a shackle specialist.”

Then, the specialist may say, “I have no idea how that got there, but have you tried gaining/losing weight?”

You might hear lots of stories of someone who knows someone who had a second cousin with a similar thing and how she cured herself with rainbows and butterflies.

You might think that once you have a name for the chain, things will improve. Perhaps things do get better in some ways but worse in others. Your doctor may tell you, “I can’t remove the shackle but I can try to make it bearable for you. Oh, and I can’t treat the pain because it’s a chronic condition and you’ll become an addict. However, we can try to make more days small shackle days so you can live more of a life.”

You might hear people tell you that your particular ball and chain doesn’t really exist and that its something people say to get attention. A name does, however, help guide the weight shrinking protocol and helps you find people going through the same thing.

Some years later you may look to the past and wonder how in the world your life got to this point since that dreadful morning when you put your feet on the floor and noticed the shackle for the first time. You look down and your constant companion is still there. Still dragging you down, stealing your energy, your job, your social life, your friends, your independence… And you realize that this is as good as it gets. There is not magic spell to cast away your ball and chain. It is here to stay and you just have to learn to live the best life you can while dragging it around. Everything is hard. Everything takes ten times more effort than it should. Everything is exhausting, but you put your feet on the floor the next morning and you get out of bed. You face another day.

This is what it feels like to have an invisible illness. Unless you’ve lived it, there is no way to understand the fatigue that comes along with chronic pain. The depression and grief of losing not only friends and family relationships, but also the person you were before. The isolation of trying to give yourself time to rest. The brain fog that comes along with the pain and from the treatments.

There is no way to comprehend that, while nothing has changed much on the outside, your heart has been broken hundreds of times from disappointment of failed treatments, letting friends down, letting family down…All the while wondering if it is your fault.

The anxiety of wondering how on earth you’re going to support yourself financially or if your doctor will believe you about your burden. There are countless symptoms of chronic illnesses that span across the board – not just pain. It’s a club you can’t be in until you’re shackled, and once you’re in, you can’t get out. I hope this can help bridge the communication gap between those in the club and those standing outside of it.

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Thinkstock Image By: retrorocket


Last year was a rough one.

I was living abroad with a host family, caring for their children, but honestly not up to the task. I had class twice a week and began leaving early, showing up late or skipping entirely. The rest of the week, I spent my days in bed, conserving my energy, until it was time to pick up the children, and then I spent my evenings back in bed recovering from the mere one or two hours spent getting them home, bathed, fed and ready for bed.

I tried my best to help out beyond that, but it was all such a struggle that I hardly had the excess energy. The parents had wanted me to join them for dinner and on family outings, but I was rarely up for it. They tried their best to be accommodating, but just didn’t understand what I was dealing with. I hardly knew myself and whatever energy I could muster up was spent looking for and going to whatever specialists I thought might be able to help me.

Tension with the family grew and grew until finally it had to end. They gave me a few weeks to figure something out, but then I needed to go. I tried looking for jobs in the city with no luck. I tried calling my own family to ask what I should do and if they could help me get home, but couldn’t get ahold of anyone. The night before I was due to leave I was incredibly stressed and had no idea where I was going to go and how I was going to survive. I was standing in the kitchen of my basement apartment when I had a panic attack. Luckily, it wasn’t the first. The last time it had happened I’d foolishly thought I could calm myself by eating. The food got impacted in my chronically inflamed esophagus, and I ended up in the hospital. This time, once I realized what was going on, I was able to calm myself.

I ended up spending the next fours months “CouchSurfing” – staying with various people, sometimes old friends and sometimes people I’d just met. I had no privacy and I still struggled just to get to the store and get food every day. Since I never felt up to going out, my hosts never had any alone time and after a few days, almost without exception, things would become very stressful for the next few weeks until I moved on to the next place.

In September, I finally got a place of my own and in October I began working part-time. Normal for me is needing a nap to recover from showering before getting dressed. Normal for me is being drained by laying propped up, because even that requires too much energy. Last winter, I was waiting until I got better to tell the world of Facebook that I had been sick, but had beaten it. I wanted to be able to add that positive twist. I couldn’t just say “I’m not well” and leave it at that. Throughout the year I mostly avoided social media, but once I began working again I at least felt I had something I could share. But having a job took such a toll on me that I often contemplated forgoing food because the thought of dragging myself out of bed and to the store was so awful. When I tried speaking to the butcher or cashier, I was so disoriented I could hardly form a coherent sentence and would mumble so softly I could hardly be heard. I couldn’t even raise my head to make eye contact.

One day I saw someone walking with a spring in their step, alternating thrusting their arms in the air with each stride. I was so in awe that someone could have such an excess of energy to squander so frivolously.

A social life was obviously completely nonexistent. My only real interaction with people was virtual. I started sharing a bit about my illness, but the little response I got showed me they didn’t really understand. As the holidays approached my roommates would ask where I was going and I tried to find ways around admitting I had no plans. I watched everyone rejoicing online, ignoring my plight, and felt a growing bitterness.

But then I realized I shouldn’t be forcing myself to be happy when I have no reason to be. A growing body of research is showing that forcing ourselves to be positive all the time interferes with critical thinking and prevents us from addressing the problem. Armed with that knowledge, I did three things.

First, I shared a post detailing just how much I’d been struggling with the intention of distancing myself from the friends and family whose silence hurt so much. To my surprise, several others who saw my post reached out to share that they too had been struggling with invisible, chronic illness, which brought us closer.

Second, instead of only posting in support forums when I had a question, I began adding people as friends and connecting on a personal level, which provided the solace of true empathy. I could vent my frustrations and they’d chime in with their own horror stories, we’d roll our eyes and laugh. I no longer felt so alone.

Third, I resolved to commit myself to raising awareness in the hopes that understanding will breed compassion, and I felt so liberated by finally being open about my struggle.

If you too feel angry, bitter and heartbroken, don’t feel pressured to force yourself to create a happiness façade. Rather, find a community you can connect with and something you can passionately channel energy into, despite your current limitations. But most importantly, don’t fight those emotions. They’re a part of being human and if you’re struggling then those emotions are also appropriate and there’s absolutely nothing wrong with them.

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

Thinkstock photo via KatarzynaBialasiewicz.

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