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.

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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.

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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.

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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.

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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.

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It’s all about the Mashed Potatoes

Last night I went to sleep, “baaaa humbug!” I said as I was exhausted from wrapping gifts to be sent off to family.  There was a sense of Christmas gloom and guilt, perhaps instead of being rushed to get family gifts in the mail I should be planning instead to visit family in person.  Sure with my arthritis and new medications travel is  not easy nor advised, but Christmas is about family. Right?  I wearily fell asleep mumbling about “Plane tickets, maybe drive, it won’t snow right…zzzzz”

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The ghosts show what you don’t want to see….

Suddenly there appeared a GHOST, it my old friend Marley that had died of her chronic illness not long ago.  She was wrapped in chains, which dragged as she hobbled across the floor.  I said, “So, you are still hobbling even after death?  That’s a bummer, as I know your MS made you have problems walking when you were alive!”

Marley grumbled and pulled on her chains.  “No, I can walk fine, but these chains are the chains of anger and frustration, I must pay for my sins in this world before I can devoid myself of the chains!”  I couldn’t imagine what sins Marley was guilty of, she had dealt with her MS with courage, humor and always supported her chronically ill friends with empathy and love.  What could possibly have happened?

Marley looked glum and said “I want to save you from the chains I have to wear, by warning you to heed the three visitors you will have tonight!  Three ghosts will come to show you what has been, what is, and what might be.  Only then can you be saved from my fate!”  I assured Marley that she was only the holiday pudding I had eaten (let’s face it, pain killers give you a tummy ache), but even though she was only heartburn I wished her well in the afterlife.

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With thanks to Dickens for the inspiration for this mostly fictional blog post.

 

I then fell fast asleep to be awoken then by a jolly roly poly old physician.  He was smoking a pipe and said, “I am the doctor of Christmas dinners past!” I gave him a poke in the belly and he said “Yes I am the doctor of times long ago when doctors could be fat and smoke cigarettes, sometimes right in our office!”

He said, “Come with me and I will take you on a trip to Christmas family dinner of the past!”  He then took my hand, and I took my cane because even though we were apparently going to fly out my window I knew I’d need it if any walking were involved.

We flew out over the snow topped houses and back into history, where we landed at a holiday dinner of long ago.  It was at the Naval Academy where my husband had gone to school.  We were in a room full of young men in uniforms.They were happily eating turkey, dressing, green beans and rolls.  Next to a very handsome young midshipman was a young woman in a bright blue dress with too much trim.  I recognized myself, wearing a Laura Ashley dress.  I said “I can’t believe I had that hair, you know Doctor of Christmas past that hair took me 2 hours to curl!”

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Baby it’s cold outside at the Academy!

I then started trying to rearrange my large hair of Christmas past, really it was just too big and all that hair spray showed I had not heard of global warming yet.  The Doctor of Christmas past said “Listen, stop and listen!”

The young midshipman turned to the young me and said “I’m so glad you were able to be here for my holiday dinner.  I’m not able to go home, as my family has plans. I was going to be all alone this year, except for you.  This is the best holiday dinner ever.  I’ll never forget this. I love you.”  Obviously I had forgotten, but still young me was “That’s alright, it can get really stressful at my parents.  They are divorcing and it’s all bickering and everyone telling you how to live your life.  This is a lot nicer.  We are just enjoying each other’s company!  I love you too!”

At this the scene became foggy and I found myself back in my bed.  Had it all just been a dream?  I thought back to that early first Christmas with my husband to be.  We found we had so much in common.  Pie, we both loved pie.  Stuffing, we liked chunky bits of celery in it.  We both liked gravy on our mashed potatoes more than butter alone.  We knew what Christmas dinner was really about, food.

Then I fell back asleep only to awaken to a thinner ghost with curly hair.  It was my own current doctor, Dr. Metsch!  Dr.M was “Hello, I know we met only a week ago for your check up, and say how is that new medication working… no don’t tell me or I’ll have to charge you.  This isn’t an office visit, this is off hours volunteer work.  I’m here to show you Christmas dinner of the present!”  I told Dr.M I was impressed as she was Jewish ,but she pointed out that nowadays even Jews could serve in ghostly holiday dreams.

Next thing I knew were were flying over the mountains and tree tops to my mothers home.  Seated at the table were my brothers, my step dad and my uncle and his wife and family.  I was also seated there with my husband.  There was turkey, stuffing and my step fathers fantastic superb and probably potentially deadly mashed potatoes.  He promises to share the secret before the potatoes kill him.  Let’s just say I’ve noticed containers of heavy cream and real butter in the fridge before he makes them.  My husband was turning to me and talking about the potatoes.  I was agreeing with him about how wonderful they were.  We were talking about food, as we did long ago at our first dinner.

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Nope, this kind of weight is not going to get a pass at the family dinner!

Then, it began.  My mother asked my uncle if he had any luck with losing weight, and how it just took will power.  My mother pointed out how she was still as thin as she ever was, and that will power was all it took.  Then she turned to me, pointing out that I was the ONLY fat child.  I did point out, “You know I have to take steroids for my chronic illness, I do try to be careful about my weight, but…”

My uncle is then warned by another family member about his diabetes.  Dream me is about to make a big mistake, and even I can’t stop me.  I admit to my family that I am now diabetic because of the medications I take to treat my illnesses.  I have to take medication now to deal with this deadly side effect.  I say this as I have a spoonful of mashed potatoes and gravy halfway to my mouth.

Pandemonium ensues.  Suggestions are offered about how I should deal with my illnesses.  Everything from going vegan (from a sister in law who is and has “never been sick a day since I went vegan”) to a cousin (“It’s all those medications you take, the side effects are more dangerous than your illnesses!”) to my aunt (“no one has ever had diabetes before in our family, well except your uncle!”).  At this point I know if I put that spoon of mashed potato in my mouth I will be in even bigger trouble than I am now.

Assurances that I have done well on my new medication and that I have the ability to check my blood glucose level is not heard.  Who need google to look things up when you have my family?  It’s all done “out of love”, but I wonder, “do they not think I have very expensive well trained doctors that can advise me?”  To my horror, dream me has spoken these words out loud.  It  becomes a battle.

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Family dinners, you can feel attacked! DANGER DANGER!

Memories of all the times I have been “careless”, and even  the reminder once again, “No one ever had arthritis that I know of, except grandmother and her sister and those two cousins… so obviously it’s something she’s DONE.” My blessedly healthy and strong family is in full force attack, telling me how to cure everything wrong with me (except my Uncle, who is longingly looking at the mashed potatoes also, and we were honestly only going to have a small portion in keeping with the recommendation of our physicians).

I feel ugly, fat and guilty.  Maybe it is something I have done.  Everyone else is so healthy, I understand from my physicians and google that the immune response diseases I have are genetic in origin.  I see my cousin getting ready to suggest again maybe the wrong baby was brought home from the hospital.

I awake shaking.  I’m now terrified of what the Christmas ghost of future dinners has for me.  However when the ghost appears it is only my dear friend Marly, only this time she has no chains fettering her.

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Sometimes alone isn’t so bad, if you have warm memories. (thank you Andrew Merritt for the photograph)

She holds out her hands and smiles.  “The chains were the guilt and misery my family inflicted on me every holiday.  Instead of enjoying each others company, they would take it as a time to complain and try to fix my problems.  They also picked on my sister who still lives with MS.  Instead of a dinner with love and respect, it became something that left me weak and broken.  Our families love us, they are concerned for us, but sadly instead of realizing that life is short for all of us, they try to fix us.  They don’t try to understand what we are going through, the very effort to sit at a table can cause pain.  Travel also take much planning and is scary. Instead of appreciating our sacrifice to be with them, they tell us the latest medical cure from Dr.OZ.  Instead of praising us for what we do accomplish, like getting out of bed and facing another day with pain and complications, they don’t understand why we don’t do MORE.  We are unable to enjoy ourselves, because they are unable to accept us as we are.  Sometimes love means just being together and enjoying the mashed potatoes, in moderation of course.”

I saw then my husband, eating Christmas dinner alone.  He was in our small house, that he had gone to such trouble to save up for so I could live on one floor.  I remember him painting the rooms, working overtime for the renovations, and pushing me around in my wheelchair.  He was eating turkey and mashed potatoes.  There was a smile on his face, as if he were remembering that first Christmas dinner we had together.  He had never lost his happy memories of that time, when it was just the two of us.

I then awoke.

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Home is for making memories….and yes we’ll see the family later on!

I put aside plans to drive hours upon hours through possible snow storms to be with family.  I put aside thoughts of spending money on plane tickets and maneuvering my wheel chair through airports.  I gave up trying to plan an extra steroid shot so I could stand sitting upright for hours in travel without extreme pain.

I leaned over to kiss my husband where he was sleeping by my side.  He awoke and I said “How about we just have Christmas here, just the two of us.  Let’s make some happy memories!”  His face lit up with a huge smile. I hugged him and said “Maybe my step dad will give us his famous mashed potato recipe?  We’ll only make a little bit!”

Because Christmas dinner is about being together and enjoying food.  It’s about creating happy memories for when you aren’t there anymore.

 

Happy Holidays!

**** Please note, the above is a work of FICTION.  I do love my family, and enjoy spending time with them. Especially my wonderful brothers and incredible children!  BUT.. all of them at once, and with the fixer upers on full alert, it can be too much for when you are battling a chronic illness.  Sometimes, we just decide to “stay home”, and eat the mashed potatoes.  Which are NOT a work of fiction and do indeed exist though they are a closely guarded secret.

Chronic Illness is a Ruthless Bitch, A Carers Story

My name is Ken Myrback. I’m Maria Myrback’s husband. You know Maria from her posts here and other places.
I’m  her primary caregiver. I personally hate that term. I’m her husband, who else is supposed to do this. Thanks to Kitty’s blog chronic illness sufferers have a place to vent and help each other. Cronic illness is an unapologetic bitch. Maria was having a pretty good day today. We are on vacation at an amazing resort in the DR. We went to the pool, we went to lunch. We took a nap since we were both tired.

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Just one for dinner. It’s hard to make plans.

Two days ago we ate at Ciao, a restaurant here at the resort and it was ok. Maria’s first dish was over cooked so we sent it  back. The risotto she got was about on par with the risotto she has tried to make. She’s learning to make it. My food was good but far from the 5 star food it was supposed to be.  So we asked to talk to the kitchen manager. We got the head chef. Through our waiter as translator we voiced our concerns, assuring the chef we have both worked in kitchens. The chef was off Monday but to please us he asked if we would allow him to cook us a meal on Tuesday. I just inhaled the first dish. It was amazing.

But, with tears in my eyes, I am having this amazing meal, alone.

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great meals shouldn’t be eaten alone…

   Because cronic illness doesn’t care what plans you make. You live or rather survive by cronic disease’s schedule.  Because cronic illness is a ruthless bitch.

  I’d like to encourage other carers (yes its a madeup word, it’s my article) to write about their experiences. The sufferers aren’t alone here, neither are you. I’m fortunate, i have the time to devote to her, but how do you with full time jobs do it?

 

 

 

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.

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

Perspective on a Chronic Illness (It sucks)

I like to complain to my primary physician a lot.  She sees me every 6 weeks to help me manage my chronic illnesses and coordinate all the various specialists I see.

She also helps keep things in perspective.

That perspective is not always what I want to imagine it to be.

I was complaining about having great difficulty in planning anything.  At any given day, and indeed at any moment in that day, I do not know if I will have a flare from my arthritis will pop up.  I don’t know if I will suddenly for no reason just feel totally exhausted and need a nap.  I don’t know if I’ll get a horrible headache or a dizzy spell.  A side effect from one of my many medications could just decide to really bother kick it up a notch.  I’m a total crap shoot when it comes to making plans.

My doctor just looked at me and said “Well, you know you have a very serious illness.”

Oh yeah, I forgot that.

My doctor doesn't laugh, but she does have to keep reminding me....with a smile.
My doctor doesn’t laugh, but she does have to keep reminding me….with a smile.

Normal is out for me, for a very good reason. My doctor has to remind me,  I suffer from a very serious illness.  I just like to pretend that there is some other reason for all the things I’ve had to change about my life since becoming ill.  Perhaps a new medication will help?  Maybe if I could get more sleep?  If I could manage my pain better?  There is always this deal I am working in my head that will make my life normal again.

Then I am reminded, I have a serious illness.

My doctor, who has been my primary physician for over 20 years, tells me that after the first year, most chronically ill patients begin to find the little things in life are also important.  That much joy and happiness can be found in places other than Bora Bora.  I didn’t at first believe her words of experience. I was sure at first that doing what I used to do,  was the key to happiness. I think most people newly diagnosed with a chronic illness also feel this way. Did you play tennis for hours each day before… well tennis will make you happy again!  Loved horseback riding?  Sure, you can probably show jump horses again!  Hiking in the mountains, that 5 hour hike up the mountain, as soon as you can do that again, you’ll be happy!

It’s not that what  you could do before won’t make you happy.  It’s just that it won’t be easy, and you may need to modify it greatly.  It’s going to be impossible for it to make you as happy as it did before because now you have to plan more and perhaps do less.

I love to travel. Well, it’s better to say I love to be in new places and enjoy seeing new things. No one really loves the “travel” part!

Flying is no longer just annoying, it's almost impossible.
Flying is no longer just annoying, it’s almost impossible.

However, that travel part is now a far different thing than it used to be. A plane trip requires wheelchairs in the airport.  It’s not as much fun as you might imagine. Flying in those small seats people normal complain about is horrifyingly painful to many with a chronic illness. A recent plane trip I took was accomplished only by taking painkillers that were only for use “on the plane”. In other words they would knock you out if you took them at any other time.

The compression on my spine from sitting up straight, despite the use of pillows and even a special steroid shot, is enough to make me feel faint at times. I do want to travel more in the future, but I plan to travel far less than I did in the past.  Flying now requires pain medication that makes me feel nauseous and much planning.  It is not just annoying and bothersome, the complaints we all have about flying, it’s something to be endured if possible. It’s just not going to bring me as much happiness as it did in the past.

When I complained once I returned from the trip to my physician said again “Well you have a very serious illness.” 

I’m allowed to complain, but there is a reason flying is hard.  There is a reason planning things is hard.  There is a reason sleeping is difficult and even the simple chores of living are hard work.

I have a very serious illness.

Learning new things close to home, appreciating what is around me, that's tough to accept but what's required.
Learning new things close to home, appreciating what is around me, that’s tough to accept but what’s required.

Forgetting I have that illness is not the answer.

Adapting, following difficult and sometimes complex medical directions, and taking many drugs is not the answer either.  Rather is it not the answer I want which is “feeling like I used to feel”. No, all the new routine and medication is a way of managing my illness.  A day of feeling “better” doesn’t mean I am better.  I can’t get better, better being “normal”. It’s impossible.  It’s just that part of my brain wants to believe it is possible.

 

But, the fact is, as much as I like to pretend I don’t….

I have a very serious illness

Slowing down means looking longer.
Slowing down means looking longer.

Plane travel will hurt.  Side effect from medication that helps will bother me.  I will not be able to control when I have the energy to do things, no matter how much I want to do something.  This is not going away.  Things will get better as I manage this illness with the help of my doctors, but it will not be cured.

The perspective is fairly grim and often I just refuse to accept it!

That’s when I need a visit to my doctor to remind me. This is the reality of what you have to deal with, so let’s deal with this together. Just waiting for it to go away, so life can get back to normal, is not an option.

The media likes the happy stories.  There aren’t a lot of happy stories with chronic illness.  There are a lot of brave stories.  There are a lot of stories of compassion and friendship and how good people can be when something bad happens.  Those stories are rarely told.

It would be nice if there were clear signs of just how to deal with the anger of adjustment. Instead we make our own way.
It would be nice if there were clear signs of just how to deal with the anger of adjustment. Instead we make our own way.

There also aren’t many road maps for those of us with chronic illnesses.

We all have to make our own map for this seemingly much smaller world.  We have to begin to appreciate that all we are missing, maybe isn’t all there is to life.  It’s a world perhaps viewed from a sitting position rather than a rapid pace of seeing more and more and more.  It’s a world of reflection, of appreciation, and hard work to manage our illnesses.  It’s a world of friends that get it, and family that maintain it’s “fine” even though you know it always isn’t fine for them having to take on a new role of care giver.  (If you are lucky it’s mostly fine. But you understand it’s never 100% fine for anyone in the position of caregiver).

So, I thank my personal physician for reminding me ,because of the honest relationship we’ve developed over the years….

“You have a very serious illness.”

I don’t need an excuse for not doing things I want to do.  I don’t need an excuse for wanting to travel and being unable to do so.  I don’t need an excuse for a nap, or for having to break an appointment.  I have a very serious illness.  I just have to remember that!  It’s harder to do than you would imagine!

Maria in Wonderland

A Sense Of Wonder

by Maria Moore Myrback

My chronic illness always gives me a real sense of wonder.

I wonder when my meds are going to kick in this morning. I wonder when I’m going to stop having seizures. I wonder if I’m going to have a good day or a bad day. And most of all, I wonder when I’m going to be better. Am I ever going to be better?

11228902_993497547381210_1756861692640860702_n
Which medication will work? Trial and error is a process that is frustrating and miserable.

Having a chronic illness is exhausting. I wonder when I’m going to have enough energy to do some of the things I used to do. Like maybe leave the house for something besides doctor visits. I wonder if I’m ever going to get through an entire day without having to sleep so much because my meds make me feel drugged.

It's a struggle to find just the right mix of medication and what works for us personally. This slow painful process is something no one is prepared for.
It’s a struggle to find just the right mix of medication and what works for us personally. This slow painful process is something no one is prepared for.

Then there’s the pain. I wonder when my skull will finally crack like the eggshell it seems to be. I wonder when the feeling of someone stabbing knitting needles into my brain will finally stop. I wonder if I’m going to continue having these debilitating headaches. And I wonder that if I do, am I going to have to change anticonvulsant medications. I understand from talking to others that I’ll have to be weaned off this med and then start the process of building up to the therapeutic dosage of the new medication. I’m really not looking forward to that. It seems like a form of slow torture. So I wonder if I’m ever going to get off this medication merry-go-round.

A not very fun ride, managing an illness that will never have a cure.
A not very fun ride, managing an illness that will never have a cure.

I wonder if I’m ever going to be me again. It’s frustrating as all Hell trying to figure out how to get back a sense of my normal self. I’m starting to lose hope that I will ever get back there. Three months is a long time for a newbie like me. But I know many others have been dealing with their illnesses much longer. I also know that I may never be back to my old self and it makes me sad. And angry.

Being self centered is about survival, but almost everyone wishes to feel better so they can be better for their loved ones.  Guilt happens.
Being self centered is about survival, but almost everyone wishes to feel better so they can be better for their loved ones. Guilt happens.

I hate feeling self-centered. I get so blooming angry and my sense of wonder makes me think, “Why did this have to happen to me? I was doing so well.” I was following my dream of becoming a biologist. And now I wonder if I’m ever going to get that chance again. Sometimes I cry because I think my days of doing research with really big Burmese Pythons are probably over. And sometimes I get so angry that my jaws ache from gritting my teeth so hard. Once in a great while I even allow myself to scream out my frustration, sorrow and anger.

We all want to get off this ride....and showing our anger at times helps.
We all want to get off this ride….and showing our anger at times helps.

I wonder if I’m ever going to be able to drive again. Florida state law permits me to drive after six months of starting medication, but I’m a hazard to others. Ten seconds of having an absence seizure could kill someone. I won’t take the chance of harming others because the law permits me to drive. So there goes my dream car. I really wanted my next vehicle to be a full electric Kia Soul because I am environmentally conscious and climate change is a real thing that I don’t want to contribute to. Or should I say I didn’t want to contribute to? But on the plus side, I’m selling my beloved white Ford F150, Yeti, to my eldest son for a song. Well it’s a plus for him anyway.

Like I said, having a chronic illness gives me a real sense of wonder.

Yet again, thank you Maria for sharing what so many of us go through.  I think we wonder that so few people share what having a chronic illness feels like.  We seem to be a nation of “just suck it up”, and there is no way to “such up” such pain, both physical and emotional.  Just knowing, it’s not just me and I am not weak, I find is a help.  This is incredibly tough, and no one asks you before if you are brave or strong enough to handle it.  I hope, and I don’t wonder, that soon Maria will be feeling better.  Finding that Goldilocks medication zone takes a long time.   

Also huge thanks to Mark Roberts for the amazing photographs of Coney Island at the end of the season to accompany this article.