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.

11260704_10208371501312252_8613467409647114809_n

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.

dickens-a-christmas-carol-granger
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.

IMG_0052_3
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.

PILLOW FORTS! and other pain tricks

I am having  a horrific arthritis flare. I awoke at 3am with every joint screaming at me.  I reached down to touch the fiery knees and knew, surprise flare attack!

The day before had been especially good, this is the trap.  I had overdone it a bit, but also with most chronic illnesses you just never know when it’s going to go from a 3 on the pain scale to an 11.  It might have been something you’ve done, or it might just be arthritis reminding you it’s a bitch.  Either way, dealing with the pain peaks is impossible.

It’s impossible, but of course we do deal with it.

$_35
My pillow fort can be even more complex than this one.

One trick, is the pillow fort.  Most people with joint pain have a pillow fort plan.  There is no one mattress that can support all our aching joints, no matter what the TV ad says.  Instead we use pillows.  This one supports a leg, this one cushions a hip, this one supports your neck, this one is just flat enough for your head.  You don’t want your head pillow to be too fluffy or your neck joint will hurt.

I have a specially shaped pillow that can go between my knees for extra support and to keep the joints straight.  It’s very helpful most nights.

Still, pillow forts no matter how comfortably built are just built of fluff, and tend to move around as you move around.  The protective pillow fortress needs to be rebuilt often during the night.

1919115_10201313277749218_5620351818094018522_n
I wonder if there are enough geese for all the down I need to support sleep?

A flare means, nothing is going to help your pain.

You get kind of desperate.

Some drink a tad.

That’s fine.

Period.

10154016_10201313277909222_7061639787074029500_n
Need MORE geese!

I don’t, because I have a genetically fragile liver.  Thanks relatives that mated and gave me this!  My one daughter also has it so I apologize to her.

However, I am not supposed to take Aleve, it’s bad for the liver, but it does help with the joint pain.

When you are awoken by pain and you can’t even imagine how you are going to survive it, and you’ve tried the ice packs and heating pads and pillow forts galore… you do what it takes.  For me that means sometimes taking an Aleve and offering an apology to my liver.  Fingers crossed, but I’m thinking about living through the next few hours not the next 20 years.

12392005_10201303755551169_1817699001023855592_n
it’s kind of lonely as no one else can really help

Some use medical marijuana.  This is not available where I live (legally) and since I refuse to take it in anything but gummy bear form (it comes that way) I just suffer. But at 5 am after having been awaken at 3am, I would eat some gummy bears.  Recent studies show it doesn’t hurt your liver!

Right now I am looking at this being a record flare, possibly lasting 24 hours.  I’m going to one of my doctors tomorrow where we will certainly TALK ABOUT THIS!

Meanwhile I’m planning a super deluxe pillow fort and hoping for some sleep tonight.  Finger crossed, and Aleve taken, it’s often whatever gets you through the night.

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

Ten Reasons Why I Am Your Toxic Friend

My Facebook feed is full of various links to the delightful articles entitled:

“TEN TOXIC FRENDS YOU SHOUD DROP RIGHT NOW AND LAUGH AND DANCE ON THEIR GRAVES AFTER THEY COMMIT SUICIDE BECAUSE YOU REJECTED THEM!”

or…

“TEN TOXIC FRIENDS THAT WILL MAKE YOU TOXIC IF YOU DON’T HARDEN YOUR HEART AND DRIVE THEM OUT OF YOUR LIFE INTO A WINTER SNOWSTORM WHERE THOSE LOSERS CAN DIE!”

or….

“TEN TOXIC FRIENDS THAT YOU SHOULD DROP AS YOU ARE OF COURSE PERFECT AND SHOULD NOT HANG WITH LOSERS!”

The first thing I thought on reading one of these articles was “Wow, there are people that have so many friends they can get rid of up to TEN of them?  They even have ten friends? Who has TEN FRIENDS?”

After reading this articles I discovered that I am indeed YOUR TOXIC FRIEND.  In fact, almost anyone with a chronic illness is YOUR TOXIC FRIEND. The below is inspired by all my wonderfully brave and strong chronic illness toxic friends.

I'm a little complicated and different....(photo by Andrew Merritt)
I’m a little complicated and different….(photo by Andrew Merritt)

TEN REASONS I AM YOUR TOXIC FRIEND

Chronic Pain Edition

  1. I will whine and complain a lot.  I may not be very positive.  I may not find much to be positive about.  I probably have just come from my specialist (one of several) who is “In trials this drug helped 80% feel 20% better, however there is a chance you will may catch Ebola.  It’s just a side effect though, don’t worry about it.”  It’s hard to be your happy positive friend all the time.

    Chronic illness is not glamorous, but we adore our glamorous friends. Share you life with us!
    Chronic illness is not glamorous, but we adore our glamorous friends. Share you life with us!
  2.    I may not be supportive.  This is not because I am not supportive of your exciting successful life.  If I am honest,  I am jealous.  I do want to hear about your trip to Madagascar to feed orphan lemurs, and hang with Brad Pitt.  Tell me, but part of my heart is breaking that I also can’t feed baby lemurs.  (Brad Pitt you can have).  So if I’m not cheering about your fantastic life it isn’t that I’m not happy for you.  I am.  Just give me a few moments to warm up to it.  I want to feel part of your life.  I just need to mourn the part of my life that is over first. Bear with me, and keep sharing.  Remember this is my problem not yours.

    I might be a little busy trying to just hang on at times. But I still need your friendship.
    I might be a little busy trying to just hang on at times. But I still need your friendship.
  3. . Money.  I will be your cheap friend.  I won’t be first to reach for the tab.  You send me beautiful holiday gifts and in return I send you a home made book mark.  I wish truly that I could buy you everything deserve for putting up with me.  I wish I could gift you with the knowledge of what your friendship means to me, because I honestly can’t afford to buy you a nice present.  Medical bills, especially in the United States, are very high.  Co payments for the insured often eat up expendable income.  Sometimes money goes for a thumb brace, or a wheelchair, or even just something to make my life easier.  I spend too much on books, because I find reading such a wonderful escape.  I am cheap as I am broke.

    Yes, we can difficult to understand at times. (photo by Eric Vicaria)
    Yes, we can difficult to understand at times. (photo by Eric Vicaria)
  4. I will not be on time or be reliable.  That is because I don’t know what each day will bring.  Will I have an arthritis flare?  Others don’t know if they will have a killer migraine.  Perhaps they will just feel sad, and need a day in bed.  Whatever our long term medical issue, the one thing we all have in common is unpredictability.  We have no clue if we’ll be able to make that lunch date or not.  We may spend time getting ready to go out, to find we are exhausted.  We are not to be relied upon, and we know it.  Don’t count on me.  But know I count on you and your friendship.

    safe_image.php
    We’re not always ourselves. Let us know our fight to manage our health is appreciated by you.
  5. I will focus on ME!  This means it takes a strong person to be the friend of a person with a chronic illness, because of this we have few true friends.  So we will take any opportunity to just dump on you all our miseries, fears and hopes.   It is also helpful to talk to someone that is not a close family member or medical professional. Consider listening to someone with a chronic illness a gift to their husband, wife or children. They take the burden of this, and any break is a wonderful gift only you can give them.  It is important that I remember to ask about you and your life, and indeed remind me or just butt in with updates about your life.  It’s good for me!  Also by talking about yourself, and your problems and happiness, takes the focus away from ME, and toward someone else.  I can be a good listener also.

    You may bring the gift of a break from my constant whining to my family! (photo by Eric Vicaria)
    You may bring the gift of a break from my constant whining to my family! (photo by Eric Vicaria)
  6.  I will talk about inappropriate topics.  These will include medical stuff you probably don’t want to hear about while eating.   I will probably talk about bowel movements and migraines from hell and funny rashes during dinner parties.  This is because this is the reality of my life.  I’ve had to overcome any respectful distance I had between my body functions and my mouth.  I talk with doctors galore about the most intimate and disgusting things, until I become a little too comfortable with it.  A gentle reminder that this is gross is welcome, but also, you may just have to put up with my TMI mouth.

    We all need friends, or minions to do our bidding. Whatever! (photo by Andrew Merritt)
    We all need friends, or minions to do our bidding. Whatever! (photo by Andrew Merritt)
  7. You may feel our relationship is one sided. You may not feel comfortable talking about your life and your problems.  You may feel your problems are nothing compared to mine, so why would I be interested?  This is a common fallacy.  I am very interested in the lives of my friends, and while I have to admit I feel overwhelmed at times by my health, I am not overwhelmed by yours.  I want to listen.  It’s a sign of respect when you are honest and open with me.  You will find I have incredible empathy, and if anyone with a chronic illness says to you “Well that’s NOTHING, listen to how awful my life is!” you have every right to drop them as a friend.  That person truly is toxic.  Most people with a chronic illness do not feel that way.  We are indeed happy and glad for our healthy friends.  We would never ever wish illness or pain on anyone else.

    Sometimes it's hard to smell the flowers. Your friendship helps. (photo by E.Vicaria)
    Sometimes it’s hard to smell the flowers. Your friendship helps. (photo by E.Vicaria)
  8. I probably won’t listen to your well intentioned medical advice.  You have something wonderful to share with me.  Scientists have found a cure for whatever I have…. IN MICE.  My own doctor jokes with me that every article about a scientific breakthrough should be ignored if anywhere in the article it says “IN MICE”.   Also, I know you have a friend that found acupuncture so helpful, or an article proving drinking apple cider vinegar cures arthritis. I am sorry if I am not respectful of your advice and caring.  I understand it’s because you do care that you share, but if I ignore you advice please don’t be angry.  I have a good medical team, and medical science is not able to cure a WHOLE LOT OF STUFF.  In fact, it’s shocking how often doctors say “Well, we can manage that, to the best of our ability, but we can’t cure it.”  Major illnesses like most arthritis disease and almost all inflammatory illnesses are without cures.  Even managing these illnesses is hit or miss.  It is depressing, for both patient and doctor.  In fact, neurology and rheumatology are the least picked of specialties for new physicians.  It’s just too darn depressing to have patient after patient that will only get worse, not better.

    I may not always take your advice, but thank you for caring.
    I may not always take your advice, but thank you for caring.
  9.  I am grumpy sometimes.  I may not want to talk.  I may withdraw.  This is far from the time to pull away.  It’s the time to remind me you are still my friend.  I could be feeling depressed. Depression is the often deadly companion of any chronic illness.  Want to be a hero? Stick with me through the rough times and you could be saving a life.  I will be that moody friend.  When I disappear for a bit, it’s worth finding me.

    I'm still a better friend than an insurance salesperson. (Photo by E.Vicaria)
    I’m still a better friend than an insurance salesperson. (Photo by E.Vicaria)
  10.  I will not be an equal partner in this friendship.  I will ask of you far more than you can possibly ask of me.  But, your friendship is a gift that makes me feel needed and wanted.  It gives meaning to a life of pain and answers that question “Why should I go on?”  I should go on as I would be missed by my friends.  Plus, you’ll never get empathy and gratitude from anyone like you will from me!  Your friendship isn’t just for fun with a person with chronic illness, it may be one of the things that gets them up in the morning.  Friendship becomes something so much more than you ever imagined. It’s not always easy, but take pride in how important you are to another person.  Your life becomes more important and meaningful through friendship with a person with a chronic illness.

Yes, I am that toxic friend.

But, friendship has an importance to me that it doesn’t to other “normal” people that never make those toxic lists.  You will never be more appreciated ,or indeed loved and needed, than by your toxic chronically ill friend.

 

 

 

 

 

 

 

 

 

 

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.