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.

Advertisements

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.  

“You have a lot of pills!”-and- How your Illness is your JOB

I wish I could somehow classify those that exclaim “Wow! You sure have a lot of pills you take!” or “You take a lot of medication!” or “You must be really sick, is it good for you to take so many pills?”, as rude insensitive people.

I can’t

A lot of bottles can un bottle some commentary.
A lot of bottles can un bottle some commentary.

That’s because even my own daughter at one time burst out with what she was thinking when she saw my small case of medication.  She simply exclaimed “That’s as many pills are Bill is taking!” (Bill being a family member in hospice care). My daughter is a kind caring person.  My neighbor that also saw the array of bottles is also a nice person.  He couldn’t help commenting “Wow I can’t believe how many pills you take!”  It’s just simply the number of amber colored bottles all jammed together in a small case I use to hold them that can cause these outbursts.

I try to be very discreet.  I keep my medicine in a long thin case that could hold spices or knitting needles and a few balls of yarn.  I also have a method to the madness.  More than one friend has expressed concern about how I keep them all organized.  Suggestions of pill holders I accept with a smile.  There is no pill holder that can keep track of these medications.

My system is take the bottle out after taking a daily pill.  Twice daily  pill bottles are moved from one side to the other.  Pills for “as needed” use stay in the middle.  I keep the pills in the bottles, as it helps me track which pills I’m running out of.  CVS Pharmacy and I are good friends. I’ll visit at least once a week and often twice.  Keeping the pills in the bottles with the names (many names are very alike), helps me order refills.  I have to order in time as things like “Seizures” and “Heart palpitations” and “shock” are consequences of missing even one dose.  I once had a $200 courier delivery of a needed medication, because I had miscounted.

There still isn't just one treatment. Most chronic illnesses require multiple mediations and treatment.
There still isn’t just one treatment. Most chronic illnesses require multiple mediations and treatment.

People see my medication because I have to take medication at all times of the day.  If you are with me for long enough, you’ll see me open the case and move a few pill bottles around.  I’ll also often have to say “Look, sorry but can we drive thru and get some fries or a snack?  I just need a little food or this medication will come back up.”  I also carry Cliff bars and Atkins bars for the stomach upset that invariably follows ingesting several of my daily medications.

When I was first diagnosed with Hashimoto Thyroid I was pretty upset about thyroid medication. The fun part of Hashimoto is that it slowly destroys your thyroid.  Your medication is always in need of rechecking and tweaking.  It’s also hard to time thyroid medication.  I found I have to take it in the middle of the night to have a fully empty stomach.  My arthritis medications require a full stomach.  You have to not only take your pills, you have to take them correctly.

When I worked my way up to about 8 medications, I began to rebel.  My husband even talked to my personal physician about how many pills I was taking. When she recommended one more, he called her up to complain.  The thing is we are lead to believe that not taking medication is good.  However, if you don’t have to take medication that means you have good health. If you are prescribed medication and you don’t take it, you then can become very ill.

No cure today and we know RA attacks even children.
No cure today and we know RA attacks even children.

Doctors talk about how one of their toughest jobs is getting people to take their medication.  People have high blood pressure, but they feel better, so they skip taking the pills.  If they go on a trip and forget the pills, they don’t worry about it.  One of my neighbors used to  skip taking his blood pressure medications when he went on trips.  He had a hart attack, not knowing missing 2 weeks of his medication was a truly serious thing.  Now he always takes his medication. Consistently taking  your medication is an important way to stay healthy.

It’s hard to convince people that I’m not going to die tomorrow when they see all my medication bottles. Yes I will probably die before you do!  I have a 2 serious types of arthritis, and a thyroid issue.  Most people with an immune disease usually have more than just one type of immune/inflammation disease.  I was pretty much assured once I was diagnosed with Hashimoto that there was something else going on.  The pills are a compromise between quality of life and longevity.  The pills do show I am indeed very ill with more than one serious illness.  It’s just SEEING all those pill bottles that brings home the reality to people.  Yes I look fine.  I look fairly normal.  Sometimes I use a wheelchair, but most times I get by with a hiking stick (I like it better than a cane).  The pill bottles bring it home to people that I am truly very ill, no matter how well I look on the outside.

I also might live longer without all this medication. My liver has in no uncertain terms clearly shown it dislikes all these medications. However, I would certainly not live better.

Every joint ,from head to toe, is unhappy
Every joint ,from head to toe, is unhappy

Now the downside of medication, besides scaring your friends and family.

The medication effects your mood.  You will never be that healthy person you have memories of ever again. That really sucks.  That sucks big time. Some days I cry for that person.  She’s gone.  Accepting your disabilities means mourning that healthy person who is now gone.  I know I miss her a lot. This is a good thing to do, just like mourning for any friend that is not coming back.  Friends and family don’t always realize that person is gone.  Not coming back.  “So when do you think you’ll feel up to kayaking trips again?” Never, the person that kayaked around the lake doesn’t live here anymore.

Also, often when I wake up in the morning I pause a moment as I know it’s as close to me without meds as it’s possible to get.  Most of my medications are long term.  Part of them stays in me at all times.  Still at night many of the medications wear off.  I awake because of pain.  There is no longer waking up not in pain.  I’m not taking achy joints or being a little stiff.  I’m talking severe pain that wakes me up.  I hurt so much that  I can no longer sleep.

It takes a strong heart to live with a chronic illness.
It takes a strong heart to live with a chronic illness.

That’s alright though as I know I can take my morning anti inflammatory pill.  It has to be near the bed or someone has to bring it to me. I often can’t walk well before I’ve had it.  I risk falling or my knee just giving out. I have to take the medication and wait for about 30 minutes for it to start working.  Then it is safe for me to move.

What is surprising is that sometimes it’s tough to take those morning medications.  I want to spend a little time with the real me.  “This is me without medication” I think.  I check in with myself.  It’s usually going pretty badly.  Mentally though it’s nice to not be influenced by medication.  Depression is a side effect of several of the medications I am on, including the new one I’m helping to test.  Some of the medications make me drowsy, some make me cranky, some make me less sharp.  Despite the pain, it’s good to check in on the old smart funny person that is sometimes hard to find.

I am happy to say the  longer I am managing these illnesses the more I am also managing my personality on medications.  I’m more able to step back and say “Well that’s not me, that’s a medication” and actually over ride the pill.  The old me is more and more able to toss aside the psychological effects, but it’s a lot of work.  I’m still learning.

Some days...nothing seems right!
Some days…nothing seems right!

I also check in with myself in the morning to remind myself “Without medication, this is how people lived”.  The thyroid alone would be a horror without synthetic replacement. I’ve seen photographs of people before treatment for a disease like Hashimoto and it’s not pretty.

Arthritis also demands medication.  I would be blind from the one type I suffer from, and the other would require me to be in bed most of the time.  I remember as a young child visiting my great grandmother.  She resided full time in the bedroom at my grandmother’s house.  She had been in that bedroom for over 25 years.  Her hands were gnarled and misshapen. She was  blind and my grandmother spent hours tending her to try to alleviate her pain.  While I also spend many hours in pain, and will probably end up spending more time in a wheelchair than I do now, I also have treatments that will slow the progress of the diseases.

There isn’t a cure for most inflammatory diseases.  There is management.  There are an ever increasing number of medications for patients to try. None promise a cure. It’s always “Some patients feel up to 30% better on his medication.”  It’s a very tough battle, but I’ll take 30%.  My morning pre medication check in reminds me it could be a lot worse.

Mornings are probably the worst time for most with a chronic illness.  A lot of people with a chronic disease awaken and for a moment or two forget that things have changed.  Then comes the realization “Oh right, I hurt because of that disease that’s never going away.”   It helps if I don’t dwell on it too long and JUST TAKE THE PILLS!   I know the visits with myself aren’t really emotionally healthy if they go on too long.  The sooner I accept each morning that I have to TAKE THE DAMN PILLS, the sooner I can get through a day of managing the illnesses.

My job, to paint on that smile and do the best I can managing the diseases!
My job, to paint on that smile and do the best I can managing the diseases!

My regular doctor reminds me that MY JOB is managing these illnesses.  I complained to her once that I had “no job” and she said “No YOUR JOB is to take those pills correctly and manage  your diseases.”  Her word really helped change how I felt about the illnesses.  It is work.  It is important work.  Many people consider yoga or running or meditation important adjuncts to their life, I have to consider managing my illnesses are far more than a adjunct.  This is MY JOB.

When we wake up in the morning we don’t always want to go to work.  We often have suffered through a job we don’t like. I don’t like my job.  But it’s what I have to do.  Next month I start a new type of physical therapy that will hopefully allow me to regain some strength without damaging my joints. I am not looking forward to what I consider overtime!  I hope though it will help me do my job of illness management better though.

There's always a reason to smile. Even if it hurts.
There’s always a reason to smile. Even if it hurts.

To my friends with a chronic illness, remember, your illness is YOUR JOB.  Even those of you with jobs that give you a paycheck, you have a second job of managing your illness.  Don’t let anyone ever say that you “do nothing but take pills.”  We work far harder than most people.  The psychological challenges and the physical challenges we face every in my opinion means we all deserve stellar job reviews for just getting through the day.

And the next time someone says “Wow you have a lot of pills!” just consider them the tools of your trade.  A plumber has a lot of tools. An accountant has a briefcase and laptop.  A football player has pads and a helmet.  You have medication and determination.

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.