The Dark Side of Side Effects

When Medications Attack

By Maria Myrback

Remember how drug commercials have this big, long list of side effects? And how, when you get a prescription filled, they give you an encyclopedia’s worth of papers about that med? There really is a reason for that.

Once in a very great while, someone will have one of the extremely rare side effects on that list of extremely rare side effects. Lucky me, I won that lottery. Now, if I could only win the Powerball…

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Things got weird, very weird

Even as I write this, I still feel a bit detached from the situation. Thank goodness I don’t find it funny anymore. Though, you gotta admit, my telling the receptionist to calm down and take deep breaths while calling about this weird suicidal ideation thing… That’s pretty funny.

Isn’t it?

But I digress for comic relief.

What happened scared my husband, my father, and probably a few other people who are uncomfortable talking about this kind of thing. When we’re talking about medication and the brain, no one really thinks that a super rare side effect is going to happen. That’s the reason that it’s a super rare side effect. But it does happen.

Before I go on, let me just say that this is NO ONE’S fault. We had been working my dosage up slowly to get me acclimated to the new drug and I was doing just fine aside from still having some seizures. I had already been weaned off the old drug so there wasn’t an interaction. I don’t blame anyone and no one is at fault.

 

With that in mind, what follows is what I can remember when we went from 100 to 200mg of the antiepileptic med. I took the first one at night, figuring the sooner the better. I noticed I was sad, but I thought that was because of the phenomenal cost of the pills. So I was doing what I usually do in this case: mentally beating myself up. Fortunately, my daughter was on Facebook and we had a good time pretending to be Starfleet officers. By the time I went to sleep, I was feeling much better.

The next morning, I woke up feeling alright, still smiling about the previous night’s fun. Then, about a half an hour after I took my morning pills, that’s when things started to go sideways.

I kept looking over at the steel hair stick on my nightstand and wondering, for no reason whatsoever, if puncturing my jugular with it would kill me. That should have been the first sign that something wasn’t right, but it seemed like what I should be doing. Nobody suggested it. I wasn’t reading or watching anything that influenced me. It was just part of the list of things I should do that day.

So I started researching which would kill me faster, puncturing the jugular or the carotid. Turns out, the carotid will make you bleed out faster. Since I didn’t remember where exactly in the neck that was, I started looking at physiology diagrams to find the best place to stab myself without making too much of a mess.

That was when Ken asked me to look up the address for the new Veterinarian because my dog had an appointment. I felt mildly agitated because he was tearing me away from my research. Yes, the research on the best place to stab myself. It was okay though because he was taking the dog and I was to call him with the info.

Through all of this, the linear equation of A (stabbing) + B (carotid artery) = Dead wasn’t making sense. Stabbing was something you did. The carotid artery was a thing in my body. The two weren’t associated in any way at all. It was just something I was doing. Like a honey-do list, but with sharp things.

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Even after I called Ken with the address, I still hadn’t been jarred out of this state. But there was something that didn’t seem quite right. When I had the diagram in front of me that showed me the best place to hit my carotid, something seemed weird.

I thought maybe something was wrong with my meds but I didn’t want to bother my neurologist’s office with nothing, so instead I called the suicide hotline, thinking they would know the answer. I really didn’t want to kill myself, but stabbing myself in the carotid just seemed like the thing I should be doing.

And that was what I calmly explained to the man who took my call.

Just as calmly, he explained that I should call my neurologist and tell them what was happening because I was having what he referred to as “suicidal ideation”.

Which is weird.

I mean, it’s not like I wanted to die or anything.

It was all just so weird.

And that’s what I told the receptionist at the neurologist’s when I called. I had this weird thing going on and the man at suicide hotline said I should call there.

That was when I thought something might be wrong, because she started getting really upset. So I told her to calm down and take deep breaths, that it was okay. I just had this weird thing.

No big deal, right?

After I got off the phone with her, I called Ken and told him what was going on. He very calmly told me he would be right home and I should just stay in bed. I was pretty pliant at that point and feeling kind of sleepy, so staying in bed sounded okay.

I don’t remember much of anything after he got home. I know he took a call from the neurologist. Then I think I slept for a while. I remember going to the doctor’s office later to pick up free trial packs of the new dosage because Ken wouldn’t let me stay at home alone. And that also seemed weird to me.

During that entire time period, it was as if all of my actions and their consequences were completely separated from one another. If I stabbed myself with a sharp object, nothing would happen because all I was doing was moving my hand. My carotid artery was just this place that existed on my body and not the target of a pointy thing. It would still continue being an undamaged thing on my body.

It was so weird.

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Because side effects, can just make things weird

Two days later, I was perfectly fine. Granted I was still having some seizures, but they’re not as frequent. I am holding out hope that increasing this medication at a slower rate will control my epilepsy. I’d say it can’t get any worse, but as I found out, it most certainly can.

Thanks Maria for sharing a very personal story, but bringing up a point we should all be aware of : Medication comes with side effects.  Some of them are very dangerous.  Maria recognized this was “weird”, and thankfully reached out to get help. It is indeed not the fault of anyone, but it is important for everyone to be aware of th

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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.

Chronic Illness And You: A Guide For The Holidays By: Maria M. Myrback

By: Maria M. Myrback

This time of year is full of wonder and joy. We love the glitter of lights and decorations, the warmth of hot cocoa and spending time in front of a cheery fire.  And stress. Let’s not forget stress.

Even when we start preparation early, it’s guaranteed that there will always be a rush of things to be done at the very last minute to make the holiday just right. But here’s the problem. For those of us with chronic illness, some of that last minute prep simply isn’t going to get done. And that’s okay.

No, really. I mean that. Stop laughing.

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Sometimes simple is ENOUGH! It’s about people, not presents or how you present your home.

We all get so caught up in making the holidays perfect for everyone that we forget that family and friends won’t care if we made the Jell-O-O salad with the little marshmallows or if there are three kinds of vegetables instead of four. Or even if the gifts that need to go out in the mail get there by Christmas.

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Let’s face it, no one really needs a jello salad

I’ve been reminded time and again that our friends and family are there to spend time with US. They don’t care if there’s a dust bunny in the corner or the floor hasn’t been mopped in, well, a while. The people who love us are more compassionate with us than we are with ourselves.

Regardless of what holiday you celebrate, remember to give yourself a few gifts. The gift of compassion. The gift of kindness. The gift of self-love. Even when we were fully healthy, we couldn’t do everything, so why are we still expecting the same things from ourselves? It’s okay.

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If they are out of hide a cat for your tree, no one will notice! 

 

It’s okay to relax and enjoy the time with your friends and family. It’s okay to have a house that looks lived in. No one expects a showplace. It’s okay to not have that dish that only Aunt Betty likes. She’ll understand.

Maybe it’s time for us to understand too.

We can’t always do this for ourselves. So, dear Reader, my gift to you for this holiday season, is permission to give yourself compassion. To give yourself kindness and to give yourself love.

Happy Holidays and may the New Year bring us all something better.

 

A bird with no song…

My Song Has Been Silenced

By Maria Myrback

When I was young, I dreamed of performing on a Broadway stage so I threw myself into acting at a young age. I got a few roles in community theater and I even co-stared in one production. Then, when I got into high school, my popularity as an actor declined. I did get a few small roles (remember, there are never small roles, only small actors), but nothing like before. Which was okay. I was still performing.

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ready to sing, but life gets in the way….

Since I was in my middle school choir, I was admitted to my high school choir as an alto. In spite of the small roles and complete lack of solos, my dreams of Broadway continued to grow. But when a parent is diagnosed with cancer, dreams have to be set aside. Singing lessons are no longer on the list of priorities when a family member is fighting for survival. Fortunately, that parent has been cancer free for over 30 years.

College demanded a career focus and even though I took acting classes, my major took too much focus. Children came soon after and the pressures of being a parent made the dreams of a life on the stage impossibility, though I still got into a few community theater productions over the years.

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The dream of sharing yourself to the world via performing, is such a joyous one, it’s hard to give up.

Finally, the kids were independent enough that I could start singing lessons again. At 42, I knew I was too old for Broadway. The dream that had been put on the back burner had eventually burnt out. I mourned the loss of it for a very long time. Once in a while, I still do.

I was excited to be taught by a friend who is a professionally trained opera singer. She encouraged me to learn for my own enjoyment and put behind me the criticisms and hateful voices from my past. So I started learning vocal exercises and breath control. That’s when I started noticing a problem.

Of course I ignored it at first, especially since my friend complemented me on the natural vibrato in my voice when I sang. I was also told repeatedly that my control would improve with time. But I couldn’t help being concerned about the stuttering exhale that became more evident during breath control exercises.

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that chance to shine among the stars, with song….chronic illness is truly a bad thing. Research and science can I hope, bring back Maria’s dream.

It wasn’t long after that I noticed a shaking in my right thumb that I had no control over. I also noticed that a few of my other fingers did the same shaking thing to a lesser degree. So I went to my doctor and he told me that I probably had what are called Benign (or Familial) Essential Tremors, a chronic nervous system disorder that causes involuntary rhythmic shaking. My neurologist later confirmed this diagnosis.

Have you ever seen an older person whose hand shakes back and forth? That’s ET. Unfortunately, this disorder can affect any part of the body. But it usually appears in the hands, head (nodding) and…voice. Yeah.

Imagine trying to give a presentation at an international conference when you sound terrified. I did that and I sounded horrible. I sounded like I had no idea what I was talking about, even though I had been working on my research for a year.

At a workshop on ET, I learned that the only way to temporarily fix the problem with my vocal chords is to get injections of Botox. I don’t know about you, but I don’t want anybody sticking needles in my throat.

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Striking the balance, of meds and anxiety and just EVERYTHING is hard. But Maria isn’t alone.

Thus I have joined the ranks of Samuel Adams, Audrey Hepburn, Sandra Day O’Connor and others who dealt with this disorder. It’s nice knowing I’m not alone and that this condition can be improved with medication. But stress and anxiety make the tremors worse in spite of the medication. I found that out the hard way.

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I just want Maria to know, while her song is for now silenced, many a beautiful person (and bird) have no great song to offer. But they are all beautiful in many different ways. As she is.

Since then, I have tried singing along with the radio and I found that I cannot hold a note. The acoustics in the shower are no longer my friend. I had dreams, but those are impossible now. My song has been silenced.

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.

Are You F.I.N.E ? Probably…..

I’m F.I.N.E.

By Maria Myrback

When I lived in Wyoming, the greeting, “How are you doing?” was an actual inquiry about your health and wellbeing. I’ve since learned that, in the southeast it’s just the same as saying “Hi there!”. In a way that really perturbs me because we really should be checking in on each other. It’s a way of letting others know that we care enough to ask after our fellow human.

How are you feeling?
How are you feeling?

Unfortunately, courtesy here requires us to say something along the lines of “I’m good. How are you?”. If you respond with the truth, you’re over-sharing or making someone uncomfortable because they really didn’t want to know that you hurt so much that your house has become a demilitarized zone, or that, in spite of being on medication, you’re still having seizures. Or that the side effects of your meds kept you up until 4 am.

I’ve learned that most people, outside of family and friends, really don’t want to know the answer. They just want you to tell them that you’re good so that they can go on with their day without having to think about someone else’s health issues. After all, if it can happen to you, it might happen to them, too, and the average Joe who has their health doesn’t want to think about what it’s like NOT to be healthy.

Just put on that happy smile.... even if with spray paint!
Just put on that happy smile…. even if with spray paint!

Which brings us to the “I’m F.I.N.E.” response. Some of you may already be familiar with what it means to be F.I.N.E. For those who don’t, it’s an acronym for:

F*cked Up

Insecure

Neurotic and

Emotional

F.I.N.E. covers most situations handily. Having a bad day? You’re F.I.N.E. Meds not doing what they’re supposed to? You’re F.I.N.E. Mourning because your chronic illness has completely killed your long-term life goals? You’re F.I.N.E. Oh yeah. Many of us know this feeling really well.

And while you know it’s an honest response, it is also an acceptable reply to people who just don’t want to hear about your health challenges or are only asking because of societal conventions. You can also use it if you’re tired of explaining the same issues over and over again. I know I get sick of explaining my chronic illness repeatedly, so occasionally it’s a relief just to use F.I.N.E. to avoid the stress and hassle of telling your story yet again.

Most importantly, remember that it’s okay to be F.I.N.E. You’re going through something very difficult and it has changed your life. Your illness has shaken you down for your lunch money and punched you in the gut. So you are perfectly within your rights to feel F.I.N.E.

Have your tool kit ready! Tough Time Survival!

The other day I awoke, took my first set of morning pills that have to be taken on an empty stomach (and then no food or drink for 30 minute after), and then did something very stupid.

I forgot to take my other medications, the ones that require food.

My dog decided to go ballistic over a new puppy next door, and I was busy dealing with his barking.  I then just went on with my day.

WHAT A DAY IT WAS!

I began to feel very weak and unwell.  This was not only physical, but also mental.  Now, those of us with a chronic illness deal with a lot of depression.  Pain demands a great deal of energy, both mental and physical. I am aware that one of the medications I take does not “build up” in the body and missing even one dose is dangerous.  I was about to find out how dangerous.

Somedays, you just know things are wrong. (photo by Mark Roberts)
Somedays, you just know things are wrong.

I had cramping, a blazing headache and started shaking.  What I was truly most frightened about was the depression and anxiety that set in quickly. Each hour brought more pain and more anxiety.  I felt I simply could not live with so much pain and depression.  While not suicidal, I was using all the tools and tricks I knew to keep myself somewhat calm.

I began monitoring my physical symptoms, making sure that they did not escalate to where I would need to go to the hospital.  I was ready to go in if needed, and knew it would be important not to drive myself.  I had the number of the local taxi service out, and also had texted my husband at work. Thankfully, before I got to that point, I figured out the problem.

Do you have a tool box full of tricks and treatments?  The time to “wing it” is not when you are in the middle of a crisis.

So what were the tools I use?  What’s helped me in the past deal with a sudden onslaught of pain and depression?  Here is the short and the long version!  WHAT TOOLS DO YOU USE?  PLEASE SHARE!  Because you can never have too many tools when dealing with chronic illness!

MY TOOLS

 Cliff Notes Version

1.Depression lies (thanks Bloggess)

2.Laugher is the best medicine

3.Distraction is important. (thanks youtube)

4.Have friends on stand by at all times.

5.Nature is good

6.Indulge.

7.Stop trying to do stuff, especially stuff you don’t want to do.

8.You have an illness, of course at times you will feel unwell!

9.Share you are having a rough time of it. (this includes sharing with your physician or go to the ER if things really escalate)

10.Don’t forget to take your medications correctly!  They can only work well if you follow directions on when and how to take them!

 

My Tool Box

1.Remember the Bloggess.  Jenny Lawson (aka the Bloggess) has blog posts that are helpful in two ways.  The first way is she writes about the important fact that DEPRESSION LIES.  My depression was lying to me saying “This pain is so horrible, I can’t live with this.  Obviously the medication is not working.  You’ll never be able to do anything other than suffer….”  I just kept remembering it was lying to me and just a few days ago I felt great, and I would feel good again soon.

2.Remember the Bloggess.  Again.  Because it’s important to DISTRACT YOURSELF.  That means avoiding anything depressing, like self help books about depression.  Or sad movies.  Or the news.  You have to laugh, and some of her blogs will make you laugh.  Think giant metal chicken, and you will survive. I also recommend the youtube bloggers Simon and Martina at Eatyourkimchi.  Martina suffers from a chronic illness.  She gets your pain, but she also shares the comedy aspects of life in South Korea.  You will laugh.

3.Think “Kitten Videos”.  My daughter called me from half a world away, where she lives, and told me “Watch kitten videos”.  Anything that makes you go “Awww” works well.  Also cats will make you laugh.  Avoid anything with Sarah McLaughlin, we want happy videos about animals. This cat site has calming videos of Persians. The most famous is India the kitten.  Also call your own pets over, nothing is more calming that our pets!

My grandkitteh Aladdin makes me smile.
My grandkitteh Aladdin makes me smile.

4.Remember your friends.  I’ve recently moved to a new neighborhood, and I really don’t know anyone well enough yet to knock on their door and say “Can I just sit here for a bit, I’m scared.”  Instead I have a mental list of everyone I could text and call that would drop everything to be there for me.  Just to listen.  The list was topped by two great girlfriends, and they also have my husband’s phone number.  The point wasn’t that I talked to anyone, the point was I knew I could talk to someone if I needed them.

I would also like to especially thank my friends, who while I did not call them, are always there for me.  When you give someone with a chronic illness permission to call, you are doing a good deed.  Just the KNOWLEDGE that I could call my friends made me feel less anxiety and safe.  Want to be a hero?  Just give a friend permission to “call if needed” with no judgement- just support.  Even if they never call you, that knowledge “I can call” is a wonderful gift that will help your friend through tough times.

remember your cheering section, even just a few friend can be all you need to get you through a rough time.
remember your cheering section, even just a few friend can be all you need to get you through a rough time.

5.Go outside.  If this was a real depression, not a lack of drug reaction, this would have worked pretty well.  It was a beautiful day and the combination of sunshine and walking the dog would have lifted my spirits.  I felt anxiety so I took the dog for a walk in the wooded area behind my house, and nine of out ten times, this makes me feel better and that at the very least I made the dog happy!

6.Break the rules.  Dieting?  Eat something you like, and forget the calories.  Find a great book on Amazon, who cares about the budget!  Order that $15 book and munch away on buttered popcorn.  Indulge.  You are interested in getting through the NOW, and you do whatever it takes.  Probably a glass of chardonnay, or a bottle of chardonnay, or heck a barrel of chardonnay, is not a good choice. But for me, food and a book works very well.  Also know your body.  A glass of wine is very helpful for many friends with chronic illness.  If it works, and you feel comfortable with it, do what works.

7.Don’t try too hard.  This is the most difficult for me.  I  hate that when I am depressed or in pain I have a “Wasted day”.  NOTHING is going to get done.  I’m just going to deal with the illnesses all day!  So I keep trying.  I cleaned the litter box, and I was “There I did something!” But I was exhausted and felt guilty as that was all I had done.  I had to then assure myself “You have a serious illness, and taking care of yourself and dealing with this illness IS YOUR JOB.”  I assured myself I would feel better, and it was time to stop faking being well.

As long as you keep moving, you are in the race. Don't expect to keep up with everyone else.
As long as you keep moving, you are in the race. Don’t expect to keep up with everyone else.

8. Give yourself permission to feel unwell.  This ties into number 7, if they day is a write off it’s fine.  It’s not a write off if you are battling to keep sane and deal with waves of pain. That’s job enough, don’t try to throw making a huge dinner or cleaning all the bathrooms on top of it.  If you are not a positive Pollyanna type, accept it.  My neighbor with RA is very upbeat.  She is “In the past we’d be in wheelchairs!” (I have also hints she is on some wonderful meds I avoid!)  I’m not going to be upbeat all the time, and that’s fine.  We should not let others tell us how to deal with our personal chronic illnesses.  Grumpy cat types unite!

9. Make sure people know you are feeling unwell.  Ask them to check in with you.  I sent my husband a text, telling him how things were.  He called right after he got out of a meeting.  If you know someone is going to check on you, especially if you are alone, you’ll feel safer.  I even reached out to people in Facebook, just in a PM, “I’m feeling bad, I’m having a bad day.”  They checked back throughout the day.

10. CHECK TO MAKE SURE YOU DID NOT MESS UP YOUR MEDICATION!  When I felt myself getting worse, I thought, “I’m going to take my next dose of medication early, I can’t wait another 2 hours.”  As soon as I saw that pill container with the arthritis drug I felt instant relief.  I still felt like crap but I KNEW WHY.  Medicine timing is very important.  Read the instructions, and be clear with your doctors about WHEN is the best time for taking a medication.  My thyroid medication took almost 6 months to figure out. When I took it at night on an empty stomach, I suffered from insomnia!  The middle of the night, I awoke about half an hour later with insomnia.  First thing in the morning works best.  However, not if I forget half an hour later to take the other 3 medications I rely on.  Medication juggling is very difficult.  We have to be vigilant.

 Remember, if things get too wacky, it may be your MEDS not you. Check to see if you have taken them correctly and contact your doctor.
Remember, if things get too wacky, it may be your MEDS not you. Check to see if you have taken them correctly and contact your doctor.

Medication mix ups can also be very dangerous.  I was getting ready to call my physician right before I discovered what had happened.  I knew that I was getting worse instead of better, and that my “tools” that usually work well were failing me.

…..also you don’t have to have a chronic illness (or two of three) to share your TOOLS that get you through the tough times.  I would love to hear more ways people have of making it through the tough times.