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?

11228902_993497547381210_1756861692640860702_n
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.  

To Sleep, Perchance to Dream….

Napoleon Bonaparte’s success can be summed up with one word.

SLEEP

Napolen was a PROFESSIONAL as sleeping...
Napolen was a PROFESSIONAL as sleeping…

Early in his career military career he acquired the almost impossible skill of being able to sleep under any circumstances. This ability was noted by his fellow officers, who were amazed that whenever Bonaparte had 10 or 15 minutes he could just nap and awake refreshed.  It didn’t matter if cannon balls were flying, or he was under pressure from the government of France ,(of course eventually he WAS the government of France), he could always catch a few winks at will.

Things changed though....
Things changed though….

Then things changed.  By the time of his second marriage to Marie Louise (considered by the French as bad luck), he needed his creature comforts.  He was heavier, older and more interested in his new and surpassingly sexually enthusiastic young wife.  The battlefield just wasn’t the same as a feather bed and the arms of his wife.  The French loss at Waterloo, and other errors in decision making, were perhaps caused his inability to sleep. Bonaparte was tired.

The Battle of Gettysburg was also perhaps a battle lost from lack of sleep. General Lee’s was reported as being tired and not his usual self.  Lack of sleep perhaps lost this important battle. Please note it didn’t lose the war.  Let’s face it, if your army is winning every battle, but is foraging for shoes, you’ve already lost the war.  Gettysburg was about SHOES.  The South needed them, the North had them.  Maybe if the Southern leadership had better sleeping habits they would have sat down and said “We were looking for shoes, maybe we should just call this war off as there is no way we can win without shoes!”

How I would like it to be, Yes with the bunnies also!
How I would like it to be, Yes with the bunnies also!

I apologize for the long start to a post that brings up this fact about those suffering from a chronic illness.

WE CAN’T SLEEP!

When we can’t sleep, we aren’t at our best. We all fail a bit at our personal Waterloos and Gettysburg because we lack a good night’s sleep.

I wake about 2-3 hours after I go to sleep ,every night, as my hip says “Yo!  You have to MOVE to the other hip. NOW!”  The pressure of my body sleeping sideway on my arthritic damaged hip gets too be too much after a few hours.  Sharp knife like pains tend to wake me up.  I then have to give the other hip a chance, and also ice the hip that woke me up.  Most nights I keep a cooler with ice packs near the bed. This is because over the course of a  night, I will have to awaken, move my position, and ice the hurting hip.

I’ve tried sleeping in other positions, but for all the other achy joints side sleep is the best. It’s a system that is far from perfect, but it’s the best I’ve come up with.

My husband is able to fall asleep within 5 minutes of his head hitting the pillow. He often announces this by snoring.  I’ve had him checked out, his snoring is because he is allergic to the cat that likes to sleep on his pillow.  He also allows the cat to sleep in his lap, and hang around the home office with him.  The cat loves him, maybe.  The cat could also think she’s in his will for a huge amount and is trying to kill him.  But the cat is why he snores.  I wanted him to need one of those breathing machines, in hopes it would be far more quiet than his snoring.  Nope, just an allergy to the cat.

Not my husband and myself.  We do cuddle, but throw in sound effects of snoring.
Not my husband and myself. We do cuddle, but throw in sound effects of snoring.

Unlike my noisy husband I toss and turn.  Like most people with a chronic illness, my medications influence my sleep habits.  Some days, all the medications have built up and it’s only at 10:00 at night that I feel good enough to do something.  A day of pain and almost feeling good enough to do something, turns into a night of “I am wide awake!”

Sadly the  most common reason a person with a chronic illness is awake is that person is in pain.  I know I complain I am in pain all the time.  There are degrees of pain.  Often I want to sleep, but a dark room and no distractions means I am awake.  A youtube video or reading or Facebook is a distraction.  I have been so exhausted and tired, but unable to sleep because of intense pain, many nights. Ice packs on my joints can help, but that means staying awake to balance them all.  Yes, a lot of people with chronic illnesses have been in too much pain to sleep.  It’s a living hell.

I used to try to sleep. Normal people sleep at night.  I wanted to be normal. My doctor even gave me sleep medication.  I found sleep medication thrown in with my arthritis medication would dope me up  not just that night but the next day also.  Then I discovered there really is no SLEEP POLICE. The sleep police, if they existed, would go door to door making sure everyone was sleeping at nighttime.  I learned to appreciate that my chronic illness only manifested itself after my children were grown.  I can sleep when I am able, which is often in the early morning hours.  I schedule almost all appointments for afternoon.  I’ll be awake, alert and able to drive safely.

There is something like the SLEEP POLICE online.  This is when someone wakes up in the middle of the night, or can’t sleep at all, and decides the distraction of Facebook would help.  Sadly, I know the minute I log onto FB in the middle of the night the SLEEP POLICE show up.

“So you are up late?”

“What are you doing up, it’s what 2am your time?”

“Are you alright, what are you doing up?”

“Ha ha! Guess you have it easy, some of us have to go to work in the mornings!

Facebook is global, and all my friends on the West Coast or Australia LOVE to ask me why I am up at might.  Yes, I am up at night.  Yes, I understand this is not “normal”.  No, I do not want to be reminded that since I have a chronic illness, much of my life is not normal. Let’s just pretend this is fine, alright?

These often aren’t the kind concerned friends. They are wonderful. They understand I don’t want to be awake, but I would love to be reassured my friendship is important to them. So what should you say to someone up in the middle of the night on FB?

“Hey, it’s great you are on here!”

“What’s happening?  It’s a beautiful day here in Sydney!”

“I loved that cat video you posted!”

In other words, just act like you normally would if it was the middle of the afternoon and I was posting.

Dreams are the best.  Life is good, and I appreciate it. However, I can only run and walk for miles in my dreams.
Dreams are the best. Life is good, and I appreciate it. However, I can only run and walk for miles in my dreams.

Sleep is difficult, but the one good thing about sleep is dreaming. In my dreams I can walk painlessly.  I sometimes even run.  I’ve more than once awoken from a dream I didn’t want to leave.  I awaken and  slowly adjust to the reality that I’m not going to run, not going to travel, and not going to do any of those things I so wish to do except in my dreams.

Mornings are tough, but that’s the subject for a different blog post!  As bad as nighties are, mornings tend to be the most difficult time of day for many of us with a chronic illness.

Mad, Bad and Dangerous to Know (but well worth knowing anyway!)

Welcome to Byron’s Heroes, the blog site where everyone is “Mad, Bad and Dangerous to Know.”

This goal of this site is to have an online “safe venting” area for those suffering from long term illnesses. I hope this site will also allow those who interact of live with someone with a long term illness a glimpse into our frustrations and anger toward the “Slings and arrows of outrageous fortune”*, otherwise known as an unexpected illness.  If you are suffering those “Slings and arrows” Byron’s heroes is the spot for you.  I can’t run this blog alone, I implore my fellow suffered of “outrageous fortune” to please contact me to contribute to the blog.  Anything from “War and Peace” to “Fortune Cookie” sized contributions are most welcome. Here we will take the gloves off (often with pain from arthritis so our joints are swollen) and get down and dirty (sometimes bending down is an issue as we get dizzy and dirt is dangerous as we are often on immune suppression medications and germs are bad).

It's safe to let the mask slip for a bit, pain is an emotional as well a physical malady.  (Andrew Merritt Photograph)
It’s safe to let the mask slip for a bit, pain is an emotional as well a physical malady. (Andrew Merritt Photograph)

The title Byron’s Heroes (I know, no ‘ but that’s just because it works better for the internet address) was inspired by a quote about Lord Byron.  The poet was considered “Mad, Bad and Dangerous to Know” by polite society of the time.  Keep in mind though the quote is from Lady Caroline Lamb, who was madly  and badly in love with Byron. History tells us she probably wasn’t that nice to know herself! Her own behavior, including being served up naked in a serving dish to Byron, shows we should not quite trust her judgement.  Even today, it’s not considered good behavior to attend a party naked under a large serving platter, unless you are Lady Gaga.  Then, it’s just good publicity.

"Yes I am still in my pajamas, my foot really hurts today!"
“Yes I am still in my pajamas, my foot really hurts today!”

The point is Byron was a talented poet with a difficult life.  He had many problems, from a mother with what we today call “issues” to a cousin with “issues” and a half sister with real “issues”.  But one of his biggest “issues” was his club foot.  He was tormented and teased about it from everyone.  Even his mother joined in by torturing him with doctors trying to find a way to help, yet in a bad mood also teasing him about how he walked. His classmates at school were probably the worst. Aren’t they always?  It also physically as well as emotionally hurt.  If Byron were “mad and bad” it was probably because no one quite got what it felt like having that darn club foot.

He also was prone to getting fat.  This was because he couldn’t move as much as others, being unable to dance or even walk vey far with his club foot.  He resisted wearing special boots made to help him, which often seemed to just cause him more pain.  Women found him brooding and romantic, but he still could never dance.  Also pity is the one thing above all anyone with a disability or illness hates the most.’ In the end though, he was killed at far too young an age by his doctors.  Don’t we all worry about that sometimes?  (Here take this medication, oh and read the four pages of side effects.  Yes that last one is “death”).

We all have a little Byron in us.  Yes we are talented wonderful people, but at times this illness just gets us down.  How many time people have said to me, now that I have two types of Arthritis “Oh well, you have put on some weight!  I suppose that’s the medicine?” (no, it’s mainly I can’t walk as much as before and I eat because if I don’t I’ll puke up my medication, but thanks for pointing out the weight gain!  I really hadn’t noticed it myself!)

It’s also about the “to know” part.  Because all of us with long term or life long illnesses have to check ourselves emotionally at times.   We all are dependent in some way on family, friends and physicians.  We want to be ANGRY about our illness.  We often are in deep physical pain. We also don’t want to drive away those we depend on so much by being a whiney jerk.

We  feel we often have to hide part of our pain, loneliness and frustration because if everyone were “to know” how we felt in our darkest hours they might not like us.  At least that is our fear.  We love these people.  We depend on their emotional and practical support to live the best life we can.  We’re often happy, upbeat and we certainly do not always feel depressed or simply overwhelmed.  But there is an anger many of us keep hidden.  It’s ours alone.

Until NOW!  Because this the place to just let out all that hidden darkness.  Our “Mad and Bad” side is allowed to run free here, because it’s not dangerous to share. Everyone with a long term illness understands this is just how we feel sometimes.  Our poor brains are dealing with pain so much it often fight back with “You think I have any good emotions left in this pre frontal cortex?  FUCK YOU!” and depression sets in for a bit.

Byron’s Heroes  here Unite,

Be Mad and Bad to your Delight!

This selection from Shakespeare finally makes sense when you are living a life with pain as your companion.  It’s a battle, emotional as well as physical.

*HamletTo be, or not to be- that is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune
Or to take arms against a sea of troubles,
And by opposing end them. To die- to sleep-
No more; and by a sleep to say we end
The heartache, and the thousand natural shocks
That flesh is heir to. ‘Tis a consummation
Devoutly to be wish’d. To die- to sleep.
To sleep- perchance to dream: ay, there’s the rub!
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause. There’s the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
Th’ oppressor’s wrong, the proud man’s contumely,
The pangs of despis’d love, the law’s delay,
The insolence of office, and the spurns
That patient merit of th’ unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would these fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death-
The undiscover’d country, from whose bourn
No traveller returns- puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all,
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry
And lose the name of action.