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.

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!

“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.

ANGER – Because there is a word for how we feel.

When I was first diagnosed with two types of Arthritis, which in itself takes years of testing, I was fairly upbeat.  After all, now that we had a name for what I was experience that meant I could start treatment. It was with little suspicion I began my first course of treatment, massive doses of steroids, that I was facing not just “a treatment” but a life time of tweaking and testing.

How I felt my first year.  Or on an especially bad day.
How I felt my first year. Or on an especially bad day.

Most immune illnesses are not “one size fits all”. My own wonderful rheumatology doctor informed me that I could possibly have an added disease “We don’t have a name for yet.”  It appears that each year more disease are discovered and named after the physician detective that traced it down.  The important thing my doctor assured me was that “The treatment is pretty much the same for all of them, that treatment is whatever what works for you.”

My wonderful family physician and I are friends. I’ve been seeing her for other 20 years.  I won’t call her by her first name though. She’s my doctor first, friend second.  I’ll call her Dr.M here. She has seen me through surgeries and illnesses galore, and my life is better for her care and teamwork approach to health care.  I’m always an equal partner. Dr.M offers suggestions, not statements.  She also understands I’m a skeptic, or make that SKEPTIC.  So she gives it to me straight.  “It” is often something I don’t want to hear, but she knows that reality is better than false hope.

Dr.M has an appointment with me every 6 weeks to keep an eye on my overall health while I take this large cocktail of medications.  Her job is to make sure all the specialists don’t kill me. I had been about a year into the arthritis treatments when I mentioned to her that I was a lot less angry and more accepting of the limitations and changes in my life.  Limitations I had been sure at one time was sure the medication would cure.

When life seems dark, sometimes you just learn to enjoy the night.
When life seems dark, sometimes you just learn to enjoy the night.

After all, I’d seen all the advertising on TV and in magazines for those Arthritis drugs.  The ones where grandmother is swinging her grandchild in the air, or grandfather is off to play tennis.  My tennis racket had finally gone into a yard sale.  I was not believing the hype anymore. Dr.M shared with me that it took about a year for most of her patients to adjust to their new limitations with any serious illness.  Patients hold out hope for a long time that they will soon be “back to my old self”.  Then patients get angry.

“Surely modern science has better treatments for my disease than I are getting!” is a common thought during this period.  People go online a lot. They start to read beyond the hype of the pharmacy sites and get to the online support groups.  Patients often try and fail at something they could do “before”.  It’s heartbreaking and depressing.

My brother sent me a quote once that goes “Depression is anger without enthusiasm”

I was both enthusiastically angry and un enthusiastically angry.  I’m still pretty angry at times.  The enthused anger is lot more healthy.  I need sometimes to just talk to my husband or a friend online. I just have to say “You know this is hard, it’s really hard.  I don’t like it.  I want to do things again.  I feel I’m missing out, and people will forget about me because I can’t keep up.”  I just need to say that, and someone to just listen.

The sofa isn't always where I want to be, but there is good company there.  Also a respite from pain.
The sofa isn’t always where I want to be, but there is good company there. Also a respite from pain.

Part of the problem is that in the United States, people that do the extraordinary are considered ordinary.  We are, as Americans, expected to rise above our disabilities. We are supposed to be full of vim and vigor.  The media features people over 100 with their drivers license.  Everyone comments “I want to be like this man!”  It seems possible that we could, through will power and not genetics, all be driving our cars when we are over 100.

The press does not hint that this man is extraordinary, instead he touted as all American.  There is no geriatric doctor saying “I know many people over age 100 and none of them should be driving.  You will most likely be dead before age 100, but if you do make it you probably should not be driving a car. This man is the exception.”

Another example is the truly heroic and lovely young person who was surfing and a shark eats a limb. The first thing the press asks this young person, who is still in the hospital ,”Are you going to surf again?”  The only answer the person can give  is “Of course!  I’m not going to let a shark keep me from the sport I love!”

But what if the answer had been “Well, I just had my arm bit off by a shark and I think I’ll keep away from the water.  It was pretty scary and there are other sports I might enjoy.”

My neighbor had a horrific crash on his motorcycle.  He loved his Harley.  This crash though resulted in a long hospital stay and he had 5 surgeries.  He’s held together by steel rods and pins.  He has to walk with a cane now.  His Harley buddies were all “We are so glad you are out of the hospital, when do we go riding again?”  Because in the United States of America, if you fall off the horse (or hog) you get right back on.  He got back on the bike and the pain was overwhelming.  He could ride, but it was painful.  It was never going to be like it was before.  He considered the cost in pain, and decided to go for a special 3 wheel sort of motorcycle that cushions the road a bit more.  His hard core Harley friends drifted away.  He’s a young man riding an “Old man” motorcycle.  Also those long road trips are thing of the past.  He was angry, then he adapted.  He’s still angry but also realizes adaptation was easier than trying to make his old life work. He could still ride a young mans bike. His friends would applaud his courage and strength.    It would hurt like hell though.

It's worth the pain of flying to see wonderful friends.
It’s worth the pain of flying to see wonderful friends.

I recently flew to Las Vegas from my home in New Hampshire for a conference.  It was my first time flying in over 2 years.  It hurt like hell.  Sitting upright is fearfully painful for me.  A slight incline is actually the safest way for me to sit.  I did it because I really wanted to attend the conference and it was worth every moment of pain.  It also showed me that traveling was now going to be a different game.  Before I had serious back pain, the beginning signs I know now of my illnesses.  Now it was a new game.  I can travel and will do so, but I no longer accept that it will be without cost.

It was important for me to fly and know “This is what it feels like.  This is bad but doable.”  It took a huge coordinated effort of wheelchairs and transit chairs and timing of medication, but I did it.  It’s never going to be easy, I had to travel a day early to the conference to spend a day in bed recovering from the traveling!  If I had done this in my angry phase, I would have been devastated. Now I am in the “Well what can I do, and is it worth the price in pain?”  Also, there is a lot of anger when I can’t do something I could do before, and avoiding the attempt over and over means I am more at peace with my new limitations.

lonely kayak
lonely kayak

One thing I have for the most part given up is kayaking.  I would go for gentle, but often hour long kayak paddles on the lake.  However, I know now I will pay a price of a sleepless night and perhaps even an ER visit if a flare gets too painful.    Sometimes neighbors at the lake will say something along the lines of “Oh are you going to let a little arthritis keep you from paddling?” my answer was “yes!”  It may be un American, but I’m more worried about how I feel now than how others feel about me.  (Also there is a double kayak and I enjoy going in that as someone else can do most of the paddling!)

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.