Unreliably Lame

A guest post by reader Katrina Branch. Katrina is working hard on her professional writing, and I can’t wait to share a link to her newest book.  (She’s shared a bit with me and it’s going to be a big success). Byronsheroes welcomes guest posts, and as editor I feel lucky that the site has so many talented writers (many of them professional, I admit to be an amateur).  Thank you Katrina for sharing your insight and also your talent as expressing yourself with the readers of the blog!

 

Sometimes I envy people with a cane.  If you are using a cane or have an arm in a sling, people look at you and think, “That’s unfortunate.  I hope it’s not bad all the time.”  They have sympathy; they can see that there is something medically wrong. If you are slow or late or have to back out of something, they think, “Oh, it’s probably that bum leg slowing her down,” and they are forgiving.

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When your medical issue is invisible, people aren’t so kind. They wonder, “Why is she walking so slowly down the grocery aisle? Is she lazy?” They tell you that they are disappointed that you’re late to a meeting; they question whether you value them.  Sometimes they don’t say anything, they just stop asking you to do things with them.  Even if you say, “I’m so sorry, I’m having a bad day,” they think you mean that you’re lazy or in a bad mood and just need to suck it up.

I may very well be in a bad mood, but I can’t just ‘suck it up’ and be efficient.  Some days it takes all I have to just get out of bed and get to the store at all—I’m cruising slowly down the aisle because if I make myself keep walking then I won’t just abandon my cart and go sit in the car and cry.  Sometimes the only reason I make it to a scheduled event is that I want to convey that I *do* care, very much, about the person I’m meeting or the group whose activity I am attending. I’m late because I have to actually prod myself to do each little step: Brush teeth; brush hair; put on clean clothes. Eat something, or at least bring a protein bar along in case the blood sugar gets dangerously low. Drink some water. Put on shoes. Get the purse. Put on the coat. Go out to the car—Wait! Go back, get the keys, then go out to the car. Put the garage door up.  Back down the driveway, close the garage door.  Deep breaths, remember where you are driving to and plan a route.  Every step, every piece needs to be thought about, because the auto-pilot most people rely on for daily living is offline for the day, the week, or—in really bad times—the month.

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Tiny Tim, now he’s get sympathy!

What I hate most about depression is that it’s so hard for normal people to grasp how damned hard it is to function at times.  It’s not that I’m ‘not trying’ it’s that I can’t.  I only have so much mental focus and energy, and I have a child and a husband. Maybe the dishes aren’t done every single day, but at least we have something to eat off of; my kid gets to school on time; most days I can get dinner made or reheated. I get the bills paid, the cats fed, the toilet paper restocked.  Sometimes that’s a labor that Hercules would struggle to complete. When a well-meaning friend says, “Have you researched X?” as a possible mode of treatment, I feel like screaming, “Don’t you get it? I can barely read the comics! I can’t research anything. I can’t think that clearly, and I can’t make that plan and spend so much time struggling through that process.  I’m barely able to make myself eat!”

If I developed a limp when my depression gets bad, I think people would look at my hesitant steps and my cane and realize that I’m not always *able* to do what I can do on a ‘good day’.  And I have no ability to predict what makes a bad day or a good day happen. I can do certain things that increase the likelihood of a good day: Get enough sleep; get some exercise; eat healthily; take my meds. I can try to avoid things that make a bad day more likely: Avoid some kinds of situations and people that awaken ghosts of dreadful times past.  But sometimes for no apparent reason the depression hits like a ninja, maiming my ability to function.  I have to limp through the day (or days) until the unseen injury heals.

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I’d rather just rest and heal….

I hate knowing people think I’m ‘unreliable’ because that sounds like I’m busy playing Nintendo or watching junk TV instead of meeting commitments or helping out with things. I’m as reliable as I can be within the limits of my illness. I don’t want to ever postpone or cancel something we’ve planned; I don’t ever want to not complete something I said I’d do!  I want to be on time, on cue, thorough, and helpful. I even want to be cheerful and fun. And sometimes, I can, I do, and I am.  But other times—I just hobble along leaning on my invisible cane, distracted and disabled by my invisible injury. It’s not about you, and really, it’s not about me.  It’s just depression, and I can’t toss my cane away and jog to the corner by ‘sucking it up.’ I can’t—not I won’t. It’s not a choice, it’s a condition.  If I had a cane, you’d understand.

A Panda Present of Presence.

Lessons I Learned from “Kung Fu Panda”

By Maria Myrback

As we all know, there are good days and there are bad days. Yesterday just happened to be a good day. After an afternoon at Disney, I got to have coffee at a little Bohemian place without having to be wheeled in. So YAY! That trip to the coffee house reminded me of just how much I missed that simple pleasure of being out around people who were simply enjoying themselves. The murmur of conversation seasoned liberally with peals of laughter was soothing and it made me happier than I have been in a while.

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Yes, I said ‘wheeled in’. Last week, my husband and I came to the decision that, if we wanted to keep going to Disney on a regular basis, I would need a wheelchair that didn’t cost us $12 per visit to the parks. So, thank you Craigslist, we found a nice one with good brakes for $50. That may sound like a lot, but Ken did some research and discovered that, brand new, that same chair cost $350. Ken also found a place to get it adjusted for $35. We can’t complain. That might sound like a good day, but for me, it really wasn’t. It was pretty awful. After all, how often do you get to be reminded that your life is going to Hell and you have to buy the hand basket, yourself? Talk about adding insult to injury.

So, of course, I had guilt. I felt guilty because my husband has to push me around in this ugly contraption. I felt guilty because we had to actually spend money on this thing. I felt guilty because, once more, I failed to get better despite money we spent on medications and the fact that I had to spend money to get medical insurance. I felt guilty because, if I don’t take the costly medications, I have a 60% chance of dying if I go into status epilepticus. I have guilt because if I die, my husband will probably drink himself to death.

I know at this point you’re wondering what the title of the article has to do with anything I’m writing. Don’t worry. We’re getting there.

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Ken has been working to find a good price for the new medication my neurologist wants me to try. Vimpat is $625 for a one-month supply here in the US. It’s $83 for 100 pills from Canada, but it could take as long as three weeks to get the meds here. Which means that there is every chance that I could go into nonconvulsive status epilepticus (NCSE) without those meds. The conundrum there is that we have been building up the Vimpat dosage while weaning me off the old anticonvulsants so my body is relying solely on this new medication.

NCSE, or nonconvulsive status epilepticus occurs when an epileptic has a seizure that lasts more than five minutes. During that time, I could stop breathing. My heart could stop beating. Any number of things could happen to end my life. On top of that, NCSE can look like drowsiness or irritability for those of us who don’t have convulsions, so it’s pretty hard to diagnose. As if that all weren’t scary enough, NCSE has a sixty percent mortality rate.

Which brings us (Finally!) to the lessons I learned from one of my favorite animated movies, “Kung Fu Panda”. The main character, a panda named Po, is “accidentally” appointed the long-prophesized Dragon Warrior. Afterwards, the ancient tortoise, Master Oogway finds Po stuffing himself full of peaches since he eats when he is upset.

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Pandora understood, life is a balance.  The good and the bad.  The winter to appreciate the summer.  Live in the present, don’t always wait for it to be Spring or you’ll miss the beauties of winter.

Oogway tells Po one of the most insightful things I’ve heard, “You are too concerned with what was and what will be. Yesterday is history. Tomorrow is a mystery. But today is a gift. That is why they call it The Present.”

There is nothing we can do about the past. It is already gone and cannot be changed. We do not know with any certainty what will happen in the future. All we have is right here and right now. This moment.

As terrifying as the future possibilities might be, I cannot do anything to change them. I can prepare, but to constantly anticipate every possibility will only make living life more of a challenge that it already is. Like I did last night at the coffee house, I will try to live more often in the moment because to do less would be to rob myself of what time I do have left.

Unwrap your Present and enjoy it to the fullest.

It’s all about the Mashed Potatoes

Last night I went to sleep, “baaaa humbug!” I said as I was exhausted from wrapping gifts to be sent off to family.  There was a sense of Christmas gloom and guilt, perhaps instead of being rushed to get family gifts in the mail I should be planning instead to visit family in person.  Sure with my arthritis and new medications travel is  not easy nor advised, but Christmas is about family. Right?  I wearily fell asleep mumbling about “Plane tickets, maybe drive, it won’t snow right…zzzzz”

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The ghosts show what you don’t want to see….

Suddenly there appeared a GHOST, it my old friend Marley that had died of her chronic illness not long ago.  She was wrapped in chains, which dragged as she hobbled across the floor.  I said, “So, you are still hobbling even after death?  That’s a bummer, as I know your MS made you have problems walking when you were alive!”

Marley grumbled and pulled on her chains.  “No, I can walk fine, but these chains are the chains of anger and frustration, I must pay for my sins in this world before I can devoid myself of the chains!”  I couldn’t imagine what sins Marley was guilty of, she had dealt with her MS with courage, humor and always supported her chronically ill friends with empathy and love.  What could possibly have happened?

Marley looked glum and said “I want to save you from the chains I have to wear, by warning you to heed the three visitors you will have tonight!  Three ghosts will come to show you what has been, what is, and what might be.  Only then can you be saved from my fate!”  I assured Marley that she was only the holiday pudding I had eaten (let’s face it, pain killers give you a tummy ache), but even though she was only heartburn I wished her well in the afterlife.

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With thanks to Dickens for the inspiration for this mostly fictional blog post.

 

I then fell fast asleep to be awoken then by a jolly roly poly old physician.  He was smoking a pipe and said, “I am the doctor of Christmas dinners past!” I gave him a poke in the belly and he said “Yes I am the doctor of times long ago when doctors could be fat and smoke cigarettes, sometimes right in our office!”

He said, “Come with me and I will take you on a trip to Christmas family dinner of the past!”  He then took my hand, and I took my cane because even though we were apparently going to fly out my window I knew I’d need it if any walking were involved.

We flew out over the snow topped houses and back into history, where we landed at a holiday dinner of long ago.  It was at the Naval Academy where my husband had gone to school.  We were in a room full of young men in uniforms.They were happily eating turkey, dressing, green beans and rolls.  Next to a very handsome young midshipman was a young woman in a bright blue dress with too much trim.  I recognized myself, wearing a Laura Ashley dress.  I said “I can’t believe I had that hair, you know Doctor of Christmas past that hair took me 2 hours to curl!”

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Baby it’s cold outside at the Academy!

I then started trying to rearrange my large hair of Christmas past, really it was just too big and all that hair spray showed I had not heard of global warming yet.  The Doctor of Christmas past said “Listen, stop and listen!”

The young midshipman turned to the young me and said “I’m so glad you were able to be here for my holiday dinner.  I’m not able to go home, as my family has plans. I was going to be all alone this year, except for you.  This is the best holiday dinner ever.  I’ll never forget this. I love you.”  Obviously I had forgotten, but still young me was “That’s alright, it can get really stressful at my parents.  They are divorcing and it’s all bickering and everyone telling you how to live your life.  This is a lot nicer.  We are just enjoying each other’s company!  I love you too!”

At this the scene became foggy and I found myself back in my bed.  Had it all just been a dream?  I thought back to that early first Christmas with my husband to be.  We found we had so much in common.  Pie, we both loved pie.  Stuffing, we liked chunky bits of celery in it.  We both liked gravy on our mashed potatoes more than butter alone.  We knew what Christmas dinner was really about, food.

Then I fell back asleep only to awaken to a thinner ghost with curly hair.  It was my own current doctor, Dr. Metsch!  Dr.M was “Hello, I know we met only a week ago for your check up, and say how is that new medication working… no don’t tell me or I’ll have to charge you.  This isn’t an office visit, this is off hours volunteer work.  I’m here to show you Christmas dinner of the present!”  I told Dr.M I was impressed as she was Jewish ,but she pointed out that nowadays even Jews could serve in ghostly holiday dreams.

Next thing I knew were were flying over the mountains and tree tops to my mothers home.  Seated at the table were my brothers, my step dad and my uncle and his wife and family.  I was also seated there with my husband.  There was turkey, stuffing and my step fathers fantastic superb and probably potentially deadly mashed potatoes.  He promises to share the secret before the potatoes kill him.  Let’s just say I’ve noticed containers of heavy cream and real butter in the fridge before he makes them.  My husband was turning to me and talking about the potatoes.  I was agreeing with him about how wonderful they were.  We were talking about food, as we did long ago at our first dinner.

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Nope, this kind of weight is not going to get a pass at the family dinner!

Then, it began.  My mother asked my uncle if he had any luck with losing weight, and how it just took will power.  My mother pointed out how she was still as thin as she ever was, and that will power was all it took.  Then she turned to me, pointing out that I was the ONLY fat child.  I did point out, “You know I have to take steroids for my chronic illness, I do try to be careful about my weight, but…”

My uncle is then warned by another family member about his diabetes.  Dream me is about to make a big mistake, and even I can’t stop me.  I admit to my family that I am now diabetic because of the medications I take to treat my illnesses.  I have to take medication now to deal with this deadly side effect.  I say this as I have a spoonful of mashed potatoes and gravy halfway to my mouth.

Pandemonium ensues.  Suggestions are offered about how I should deal with my illnesses.  Everything from going vegan (from a sister in law who is and has “never been sick a day since I went vegan”) to a cousin (“It’s all those medications you take, the side effects are more dangerous than your illnesses!”) to my aunt (“no one has ever had diabetes before in our family, well except your uncle!”).  At this point I know if I put that spoon of mashed potato in my mouth I will be in even bigger trouble than I am now.

Assurances that I have done well on my new medication and that I have the ability to check my blood glucose level is not heard.  Who need google to look things up when you have my family?  It’s all done “out of love”, but I wonder, “do they not think I have very expensive well trained doctors that can advise me?”  To my horror, dream me has spoken these words out loud.  It  becomes a battle.

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Family dinners, you can feel attacked! DANGER DANGER!

Memories of all the times I have been “careless”, and even  the reminder once again, “No one ever had arthritis that I know of, except grandmother and her sister and those two cousins… so obviously it’s something she’s DONE.” My blessedly healthy and strong family is in full force attack, telling me how to cure everything wrong with me (except my Uncle, who is longingly looking at the mashed potatoes also, and we were honestly only going to have a small portion in keeping with the recommendation of our physicians).

I feel ugly, fat and guilty.  Maybe it is something I have done.  Everyone else is so healthy, I understand from my physicians and google that the immune response diseases I have are genetic in origin.  I see my cousin getting ready to suggest again maybe the wrong baby was brought home from the hospital.

I awake shaking.  I’m now terrified of what the Christmas ghost of future dinners has for me.  However when the ghost appears it is only my dear friend Marly, only this time she has no chains fettering her.

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Sometimes alone isn’t so bad, if you have warm memories. (thank you Andrew Merritt for the photograph)

She holds out her hands and smiles.  “The chains were the guilt and misery my family inflicted on me every holiday.  Instead of enjoying each others company, they would take it as a time to complain and try to fix my problems.  They also picked on my sister who still lives with MS.  Instead of a dinner with love and respect, it became something that left me weak and broken.  Our families love us, they are concerned for us, but sadly instead of realizing that life is short for all of us, they try to fix us.  They don’t try to understand what we are going through, the very effort to sit at a table can cause pain.  Travel also take much planning and is scary. Instead of appreciating our sacrifice to be with them, they tell us the latest medical cure from Dr.OZ.  Instead of praising us for what we do accomplish, like getting out of bed and facing another day with pain and complications, they don’t understand why we don’t do MORE.  We are unable to enjoy ourselves, because they are unable to accept us as we are.  Sometimes love means just being together and enjoying the mashed potatoes, in moderation of course.”

I saw then my husband, eating Christmas dinner alone.  He was in our small house, that he had gone to such trouble to save up for so I could live on one floor.  I remember him painting the rooms, working overtime for the renovations, and pushing me around in my wheelchair.  He was eating turkey and mashed potatoes.  There was a smile on his face, as if he were remembering that first Christmas dinner we had together.  He had never lost his happy memories of that time, when it was just the two of us.

I then awoke.

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Home is for making memories….and yes we’ll see the family later on!

I put aside plans to drive hours upon hours through possible snow storms to be with family.  I put aside thoughts of spending money on plane tickets and maneuvering my wheel chair through airports.  I gave up trying to plan an extra steroid shot so I could stand sitting upright for hours in travel without extreme pain.

I leaned over to kiss my husband where he was sleeping by my side.  He awoke and I said “How about we just have Christmas here, just the two of us.  Let’s make some happy memories!”  His face lit up with a huge smile. I hugged him and said “Maybe my step dad will give us his famous mashed potato recipe?  We’ll only make a little bit!”

Because Christmas dinner is about being together and enjoying food.  It’s about creating happy memories for when you aren’t there anymore.

 

Happy Holidays!

**** Please note, the above is a work of FICTION.  I do love my family, and enjoy spending time with them. Especially my wonderful brothers and incredible children!  BUT.. all of them at once, and with the fixer upers on full alert, it can be too much for when you are battling a chronic illness.  Sometimes, we just decide to “stay home”, and eat the mashed potatoes.  Which are NOT a work of fiction and do indeed exist though they are a closely guarded secret.

Pack up your Bottles… and smile smile smile!

By Maria Myrback

One of the constants of having a chronic illness is that we all take pills. Usually a lot of pills. But what happens to those empty pill bottles when we’re done with them? Until recently the recycle bin has been my disposal unit of choice. After all, the landfills have enough problems without adding so much plastic to them.

But what if there was another option? What if we could make a difference in the lives of people in an entire country? What if we could keep children safer? What if we could virtually guarantee that someone in a third world country would be sure of making it home with essential medications?

Enter, The Malawi Project. According to their website: “While first world nations throw away perfectly good medicine bottles, medical pharmacies and hospital facilities in Malawi often find themselves with nothing except torn pieces of paper in which to wrap medicine for their patients. This is often seen in rural hospitals and villages where the poorest of the nation try to live and survive.”

The people in these outlying villages walk for miles to get essential medications for themselves and their families only to risk losing that medication on the long trip back home. Even if the meds reach home, then their small children are at risk of finding these drugs because there is no secure way to store them.

We can turn our illness into a benefit for others by donating our old pill bottles and guaranteeing that, not only will the medication reach someone in desperate need, but that their children will be safer.

What I have done is I chose a small cardboard box and I have been saving my old pill bottles in that. When it is full, I will do as instructed on the Malawi Project website and remove the labels by soaking the bottles in hot water. This way the rural doctors don’t have to spend their time peeling labels when they could be treating patients.

For more information, please visit the Malawi Project website: http://malawiproject.org/medicine-bottles-for-malawi/ or you can just remove the labels from your bottles, box up what you already have and send them to:

Malawi Project Inc
3314 Van Tassel Drive
Indianapolis, IN 46240

Perspective on a Chronic Illness (It sucks)

I like to complain to my primary physician a lot.  She sees me every 6 weeks to help me manage my chronic illnesses and coordinate all the various specialists I see.

She also helps keep things in perspective.

That perspective is not always what I want to imagine it to be.

I was complaining about having great difficulty in planning anything.  At any given day, and indeed at any moment in that day, I do not know if I will have a flare from my arthritis will pop up.  I don’t know if I will suddenly for no reason just feel totally exhausted and need a nap.  I don’t know if I’ll get a horrible headache or a dizzy spell.  A side effect from one of my many medications could just decide to really bother kick it up a notch.  I’m a total crap shoot when it comes to making plans.

My doctor just looked at me and said “Well, you know you have a very serious illness.”

Oh yeah, I forgot that.

My doctor doesn't laugh, but she does have to keep reminding me....with a smile.
My doctor doesn’t laugh, but she does have to keep reminding me….with a smile.

Normal is out for me, for a very good reason. My doctor has to remind me,  I suffer from a very serious illness.  I just like to pretend that there is some other reason for all the things I’ve had to change about my life since becoming ill.  Perhaps a new medication will help?  Maybe if I could get more sleep?  If I could manage my pain better?  There is always this deal I am working in my head that will make my life normal again.

Then I am reminded, I have a serious illness.

My doctor, who has been my primary physician for over 20 years, tells me that after the first year, most chronically ill patients begin to find the little things in life are also important.  That much joy and happiness can be found in places other than Bora Bora.  I didn’t at first believe her words of experience. I was sure at first that doing what I used to do,  was the key to happiness. I think most people newly diagnosed with a chronic illness also feel this way. Did you play tennis for hours each day before… well tennis will make you happy again!  Loved horseback riding?  Sure, you can probably show jump horses again!  Hiking in the mountains, that 5 hour hike up the mountain, as soon as you can do that again, you’ll be happy!

It’s not that what  you could do before won’t make you happy.  It’s just that it won’t be easy, and you may need to modify it greatly.  It’s going to be impossible for it to make you as happy as it did before because now you have to plan more and perhaps do less.

I love to travel. Well, it’s better to say I love to be in new places and enjoy seeing new things. No one really loves the “travel” part!

Flying is no longer just annoying, it's almost impossible.
Flying is no longer just annoying, it’s almost impossible.

However, that travel part is now a far different thing than it used to be. A plane trip requires wheelchairs in the airport.  It’s not as much fun as you might imagine. Flying in those small seats people normal complain about is horrifyingly painful to many with a chronic illness. A recent plane trip I took was accomplished only by taking painkillers that were only for use “on the plane”. In other words they would knock you out if you took them at any other time.

The compression on my spine from sitting up straight, despite the use of pillows and even a special steroid shot, is enough to make me feel faint at times. I do want to travel more in the future, but I plan to travel far less than I did in the past.  Flying now requires pain medication that makes me feel nauseous and much planning.  It is not just annoying and bothersome, the complaints we all have about flying, it’s something to be endured if possible. It’s just not going to bring me as much happiness as it did in the past.

When I complained once I returned from the trip to my physician said again “Well you have a very serious illness.” 

I’m allowed to complain, but there is a reason flying is hard.  There is a reason planning things is hard.  There is a reason sleeping is difficult and even the simple chores of living are hard work.

I have a very serious illness.

Learning new things close to home, appreciating what is around me, that's tough to accept but what's required.
Learning new things close to home, appreciating what is around me, that’s tough to accept but what’s required.

Forgetting I have that illness is not the answer.

Adapting, following difficult and sometimes complex medical directions, and taking many drugs is not the answer either.  Rather is it not the answer I want which is “feeling like I used to feel”. No, all the new routine and medication is a way of managing my illness.  A day of feeling “better” doesn’t mean I am better.  I can’t get better, better being “normal”. It’s impossible.  It’s just that part of my brain wants to believe it is possible.

 

But, the fact is, as much as I like to pretend I don’t….

I have a very serious illness

Slowing down means looking longer.
Slowing down means looking longer.

Plane travel will hurt.  Side effect from medication that helps will bother me.  I will not be able to control when I have the energy to do things, no matter how much I want to do something.  This is not going away.  Things will get better as I manage this illness with the help of my doctors, but it will not be cured.

The perspective is fairly grim and often I just refuse to accept it!

That’s when I need a visit to my doctor to remind me. This is the reality of what you have to deal with, so let’s deal with this together. Just waiting for it to go away, so life can get back to normal, is not an option.

The media likes the happy stories.  There aren’t a lot of happy stories with chronic illness.  There are a lot of brave stories.  There are a lot of stories of compassion and friendship and how good people can be when something bad happens.  Those stories are rarely told.

It would be nice if there were clear signs of just how to deal with the anger of adjustment. Instead we make our own way.
It would be nice if there were clear signs of just how to deal with the anger of adjustment. Instead we make our own way.

There also aren’t many road maps for those of us with chronic illnesses.

We all have to make our own map for this seemingly much smaller world.  We have to begin to appreciate that all we are missing, maybe isn’t all there is to life.  It’s a world perhaps viewed from a sitting position rather than a rapid pace of seeing more and more and more.  It’s a world of reflection, of appreciation, and hard work to manage our illnesses.  It’s a world of friends that get it, and family that maintain it’s “fine” even though you know it always isn’t fine for them having to take on a new role of care giver.  (If you are lucky it’s mostly fine. But you understand it’s never 100% fine for anyone in the position of caregiver).

So, I thank my personal physician for reminding me ,because of the honest relationship we’ve developed over the years….

“You have a very serious illness.”

I don’t need an excuse for not doing things I want to do.  I don’t need an excuse for wanting to travel and being unable to do so.  I don’t need an excuse for a nap, or for having to break an appointment.  I have a very serious illness.  I just have to remember that!  It’s harder to do than you would imagine!

Maria in Wonderland

A Sense Of Wonder

by Maria Moore Myrback

My chronic illness always gives me a real sense of wonder.

I wonder when my meds are going to kick in this morning. I wonder when I’m going to stop having seizures. I wonder if I’m going to have a good day or a bad day. And most of all, I wonder when I’m going to be better. Am I ever going to be better?

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Which medication will work? Trial and error is a process that is frustrating and miserable.

Having a chronic illness is exhausting. I wonder when I’m going to have enough energy to do some of the things I used to do. Like maybe leave the house for something besides doctor visits. I wonder if I’m ever going to get through an entire day without having to sleep so much because my meds make me feel drugged.

It's a struggle to find just the right mix of medication and what works for us personally. This slow painful process is something no one is prepared for.
It’s a struggle to find just the right mix of medication and what works for us personally. This slow painful process is something no one is prepared for.

Then there’s the pain. I wonder when my skull will finally crack like the eggshell it seems to be. I wonder when the feeling of someone stabbing knitting needles into my brain will finally stop. I wonder if I’m going to continue having these debilitating headaches. And I wonder that if I do, am I going to have to change anticonvulsant medications. I understand from talking to others that I’ll have to be weaned off this med and then start the process of building up to the therapeutic dosage of the new medication. I’m really not looking forward to that. It seems like a form of slow torture. So I wonder if I’m ever going to get off this medication merry-go-round.

A not very fun ride, managing an illness that will never have a cure.
A not very fun ride, managing an illness that will never have a cure.

I wonder if I’m ever going to be me again. It’s frustrating as all Hell trying to figure out how to get back a sense of my normal self. I’m starting to lose hope that I will ever get back there. Three months is a long time for a newbie like me. But I know many others have been dealing with their illnesses much longer. I also know that I may never be back to my old self and it makes me sad. And angry.

Being self centered is about survival, but almost everyone wishes to feel better so they can be better for their loved ones.  Guilt happens.
Being self centered is about survival, but almost everyone wishes to feel better so they can be better for their loved ones. Guilt happens.

I hate feeling self-centered. I get so blooming angry and my sense of wonder makes me think, “Why did this have to happen to me? I was doing so well.” I was following my dream of becoming a biologist. And now I wonder if I’m ever going to get that chance again. Sometimes I cry because I think my days of doing research with really big Burmese Pythons are probably over. And sometimes I get so angry that my jaws ache from gritting my teeth so hard. Once in a great while I even allow myself to scream out my frustration, sorrow and anger.

We all want to get off this ride....and showing our anger at times helps.
We all want to get off this ride….and showing our anger at times helps.

I wonder if I’m ever going to be able to drive again. Florida state law permits me to drive after six months of starting medication, but I’m a hazard to others. Ten seconds of having an absence seizure could kill someone. I won’t take the chance of harming others because the law permits me to drive. So there goes my dream car. I really wanted my next vehicle to be a full electric Kia Soul because I am environmentally conscious and climate change is a real thing that I don’t want to contribute to. Or should I say I didn’t want to contribute to? But on the plus side, I’m selling my beloved white Ford F150, Yeti, to my eldest son for a song. Well it’s a plus for him anyway.

Like I said, having a chronic illness gives me a real sense of wonder.

Yet again, thank you Maria for sharing what so many of us go through.  I think we wonder that so few people share what having a chronic illness feels like.  We seem to be a nation of “just suck it up”, and there is no way to “such up” such pain, both physical and emotional.  Just knowing, it’s not just me and I am not weak, I find is a help.  This is incredibly tough, and no one asks you before if you are brave or strong enough to handle it.  I hope, and I don’t wonder, that soon Maria will be feeling better.  Finding that Goldilocks medication zone takes a long time.   

Also huge thanks to Mark Roberts for the amazing photographs of Coney Island at the end of the season to accompany this article.  

Feeling Guilty, The Crime of Chronic Illness

Special thanks to Eric and Maria, Eric for sharing his wonderful roller derby photographs which I feel illustrates the toughness of those living with chronic illness.

Guilt And Chronic Illness

Maria Myrback

I know that having chronic illness is not my fault. It’s something that happens to millions of people, and yet, sometimes I find myself tripped up by crushing guilt. For the past two months I have been dealing with the side effects of my seizure medication while we steadily increase my dosage. The nausea, skull-splitting headaches and fatigue have been debilitating to the point where I don’t leave my bed unless I absolutely have to.

Out of the game... being down is hard to take.
Out of the game… being down is hard to take.

Even staying here, I spend much of my time sleeping, so I can’t even function well enough to be there on Facebook when my friends need me. That’s part of the guilt. Over the past months, I have watched while people I care about have dealt with death and been unable to be there to share their sorrows. I have watched as people I love have been mentally and physically traumatized, and all I can do is send what feels like trite messages, rather than grabbing my baseball bat and bashing heads the way I wish I could. I have stood by and watched while friends have dealt with surgeries and broken bones and all I could do is offer messages instead of going over to help out or make food to take over. And knowing that I cannot help those I love hurts desperately. But all I can do is lay here and relate to Zeus’s pain when Athena was born from his skull.

Everything is tough... for everyone on our team
Everything is tough… for everyone on our team

The other part of my guilt stems from knowing that I am keeping my husband from doing things he loves outside of the house. No, I am not refusing to let him go places. But he feels the need to stay with me and take care of me, which makes the guilt even worse. I’ve tried to get him to go to Disney but he doesn’t want to leave town without me and I can’t deal with the heat and the crowds right now. Not to mention the nearly ever-present nausea and headache tends to put a kibosh on entertainment plans.

We want to stand on our own....and we'll get there!
We want to stand on our own….and we’ll get there!

Chronic illness doesn’t just affect your health. It affects practically every aspect of daily life. It affects your family, too. I have been reminded by my eldest son that I am “not a burden, you’re my Mom.” but it doesn’t feel that way. I can’t help my friends, I infringe on the plans of my family, my husband has become my caretaker and I feel awful about all of it.

We don't want to hold anyone back, it's hard to be looking on though while everyone else seems to be in the game.
We don’t want to hold anyone back, it’s hard to be looking on though while everyone else seems to be in the game.

So if I can’t be there for you right now, that doesn’t mean that my heart isn’t breaking for you. It doesn’t mean that I don’t care. I always care what is happening to my friends. It just hurts that I can’t do what I truly want to do for you, so I have guilt.

I keep holding on to the idea that eventually it will get better. I’ll adapt, or we’ll try a new medication and the carousel will begin again. Since I’m still new to my chronic illness, I am trying very hard not to give up on my dreams, but the reality is that I may not ever accomplish my goal of being a biologist. So I live through you. My friends who are scientists. My friends who are artists. My friends who are simply sharing your lives with me. I wish more than you can possibly know that I could be there in person to share your sorrows as well as your joys. But I can’t. As with every person with a chronic illness, I have to take care of me right now. But that doesn’t mean that I’m not feeling for you. I’m still here. I still care even if I can’t be there in person.

****I can’t thank Maria enough for expressing how we all feel at times. I know the guilt I feel that my husband is now also my caretaker.  This is not what either of us signed up for, and the guilt can be overwhelming.  Also, knowing Maria, she would be the first person to step up if anyone is hurting or going through a tough time.  The inability to help, which is almost instinctive in people like Maria, is truly the worst part of having a chronic illness.  I know Maria will soon be feeling better, but also that adjusting to a new medication can be physically and mentally very fought.  Many people simply can’t deal with it, and my own doctor commented that we forget how truly tough and brave a person has to be to deal with a chronic illness.  Medicine is still very primitive in many ways.  Pain is something many of us live with, and as a once very healthy person I am shocked at the level of pain so many have to deal with. I had always assumed “You get some pills.” or “There is a shot for this right?”  No, a lot of what medical professionals have to give us is simply “Just deal with it, we’re sorry.”   Thank you again Maria.  I agree with your family though, you are very special, and I hope soon you are back at Disney with Ken.  It’s OK, you are worth waiting for no matter how long it takes.****Kitty