Ten Reasons Why I Am Your Toxic Friend

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

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

or…

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

or….

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

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

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

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

TEN REASONS I AM YOUR TOXIC FRIEND

Chronic Pain Edition

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

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

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

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

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

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

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

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

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

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

Yes, I am that toxic friend.

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

 

 

 

 

 

 

 

 

 

 

My Door is Always Open…. Sometimes….

My Door is Always Open… Sometimes…

The title of this post comes from the old children’s TV show “Duck Tails”.  The bad guy was a fox, and I would laugh because he would tell his crew ,in an attempt to be a good boss, “My door is always open, sometimes.”

This is the tale of my life.

Sometimes I am healthy enough for people to come over! (photo by Eric Vicaria)
Sometimes I am healthy enough for people to come over! (photo by Eric Vicaria)
Sometimes I'm not...(Photo by E.Vicaria)
Sometimes I’m not…(Photo by E.Vicaria)

It’s very lonely to have a chronic disease. I often want to have someone visit.  In fact, while I may stress about it before hand, I always find I do better after having someone visit.  Talking to a real live person, especially a friend, is very important.

The main problem is the unpredictability of any of these chronic illnesses. I have good friends that suffer from migraines.  I have only had two real migraines in my life, both sent me to the ER as I had no clue what was happening.  I can not imagine having to live with several of those a month. One friend lives with several a week.  Her life is one of cancelled appointments.  A migraine not treated early can incapacitate her for days.  She must cancel everything and take medication and rest.  This had not made her popular with her hairdresser.  Lunch with friends is only planned with fingers crossed.  If she wants to go on vacation, she plans in a few migraine days.  She told me “If I want to see and do a certain number of things on vacation, I know I’ll miss at least one day to migraine.  So I take an extra day of vacation to make up for it.

Her life is one of excellent health, 95% of the time.  It’s that 5% that means she can plan ahead, but the migraine can cancel plans at any time.

My own life is based around “How do I feel this morning?”  Timing is everything.  If I am having a bad flare, I have to cancel things.  Having my husband around helps.  He can entertain company and if I need to rest I do so.

I really want to have my good friend Chip come visit.  I always enjoy his company.  He’s even giving me one of his grandfathers paintings, and I”m really honored.  He knows I love REAL ART in my home as it gives such warmth to any decor.  Something made by hand reflects the personality of the maker.  I’m ready of have some of Chip’s family in the home I share with my family.

But, I keep delaying the visit.

First off, we are just moving into a new home.  This home was purchased because of my arthritis.  It’s one floor, but it’s from the 1970’s. Everything, and I mean everything, is just old enough to need replacing!  Also, my health is reflecting the stress of the move.  Boxes everywhere, and I’m trying to do a bit too much and paying for it.  Then there is health care.  To deal with the move I put off a lot of appointments and blood work and even starting physical therapy.  The focus was the move.

Now i am playing catch up.

I can handle a crowd sometimes....(photo by E.Vicaria)
I can handle a crowd sometimes….(photo by E.Vicaria)
Not so much others.... though I know company is very good for my mental health! (photo by E.Vicaria)
Not so much others…. though I know company is very good for my mental health! (photo by E.Vicaria)

However, I keep reminding myself, Chip is one of those friends that won’t care.  I care, in that I want to give him a good visit.  I want to enjoy his visit.  I would enjoy his visit no matter what, but I really would rather be having a good day!

I also have wool weekend coming up, which I haven’t even planned.  This is a long weekend of wool and yarn shopping in New Hampshire. It’s where I stock up for yarn for the winter, and also wool to do my felted creatures.  I have friends that will come and NOT mind if I decide to stay in bed, or I am up at 3 am because I am in too much pain to sleep.  The problem is I MIND.

Pity is the worst feeling ever.  If someone comes over during a really bad flare and they don’t feel pity for me they are cold hearted.  But, people with chronic but invisible illnesses tend to hide our pain.  We don’t want people seeing the time spent with tears and in the fetal position desperate for some relief.

I’ve written before about the curse of these illnesses.

People like to say “I am not afraid of dying, I’m afraid of being in pain.”

We’re in pain.  No one asked us “So, think you can handle this pain?”

Seriously, this is the nightmare people fear more than death.

It doesn’t matter we often say “I can’t handle this.”  You do.  You just do.  At one point I think each of us asks “So, I have no choice with this?  I just handle it?  Because I am bad at handling this.  Really life?  This is what I get?” (Life just laughs)

A chronic illness often means life has chosen a lonely road for you. You have to find those willing to put up with your inability to plan your days. The illness rules, we adapt, our friends do also. (Photo by Andrew Merritt)
A chronic illness often means life has chosen a lonely road for you. You have to find those willing to put up with your inability to plan your days. The illness rules, we adapt, our friends do also. (Photo by Andrew Merritt)

That “Everything is OK” image is something we even try to preserve for ourselves.  I often fail myself when I mistakenly think “This isn’t that serious, I can keep going, I feel pretty good now.”  Then I collapse into a flare brought on by my own over confidence.  My doctors have clearly pointed out that I have to STOP doing things before I start to feel tired.  I have to quit while I feel pretty good.  This is very difficult.  “I feel good, I can go to the grocery store also!”  (NO NO NO NO)

This is alas very Un American.  We’re supposed to push ourselves and run marathons and travel the worlds and crap.  Right.  It’s like the 100 year olds they write stories about that go cliff diving in Mexico. This is just a false “feel good” story.  It’s amazing how many “feel good” stories make people feel terrible.  Not running a marathon or cliff diving.  No one writes artless about people with chronic illness that are normal.

I’m going to unpack some more, catch up a little with the doctor side of things… and hope to have Chip down for some fun in October.  Also Wool Weekend will happen.  I’m going to pace myself, and focus on getting the wool I really need for projects.  I may not eat out. I can rest while others enjoy going to “Just one more stop”.  Also I have good friends that drive for me, which means I can enjoy myself even more.  Driving is painful, I can do it, but I do much better NOT doing it.  If my friend Natalie drives it means I can enjoy the fun part, the shopping.  It’s a gift she gives me.

I need to learn to trust that my friends won’t judge me and won’t be upset if I have to cancel or say “I just need to rest now, thank you.”

Depression and Facebook

Facebook is a blessing and a curse for those with a chronic illness.

One the one hand, we can connect with the world and our friends without leaving the comfort of our homes.  We can keep those that care about us informed and updated on how our illness is going, and in turn receive support.  It’s a way of feeling not alone with an illness that demands you be alone much of the time.  There is one problem with Facebook though.

Why are my friends on FB having so much more fun than I am?
Why are my friends on FB having so much more fun than I am?

Depression is part of any chronic illness.  Our brains are dealing with pain, and also a restricted way of life.  Face book can be a huge trigger for depression, at least until you have accepted that everyone has something in their life they are dealing with.  People are out with telescopes.  Suddenly I want to be out with a telescope.  I feel sad.  My good side tries to enjoy the wonderful photographs my friends with telescopes post.  I feel lucky I have the internet so I can enjoy the results of their efforts.

Other friends work full time and have jobs they get great satisfaction from.  Now many people with a chronic illness not only work from choice, but many simply have to work.  Most enjoy their work, but it is much harder for them than it appears to be for everyone else on Facebook.  You have to assure yourself that while they seem to work full time and go home and cook gourmet dinners, you are happy for them.  It’s terrific these people have the energy, time and HEALTH to do things you perhaps used to do.

I feel trapped sometimes... why is home so dull?
I feel trapped sometimes… why is home so dull?

Sometimes I remind myself I used to go out and kayak for hours.  I would walk around Paris for 8 hours straight. I would come back and sink into a hot tub and go “ahhhh” and awake the next morning and do it again.  When I see people enjoying themselves as I used to I need to remind myself “I am so glad they are doing these things, because you never know.  I could do that once also!”  If anything I want to tell my friends with good HEALTH, “Go out and do MORE!  Please share because it makes me happy to see what fun you get up to and what happiness you get from doing things.”  I just ask that they truly APPRECIATE how lucky they are.  Appreciate that walk in the park, appreciate that trip to Peru, appreciate that race you are running and the long bicycle rides.

Vacations used to BE FUN! They still are but less walking. Still I love to hear about my friends vacations!
Vacations used to BE FUN! They still are but less walking. Still I love to hear about my friends vacations!

I still get angry when I see people just standing up and walking.  They just WALK like it is nothing at all. I want to shake them sometimes and go “Do you know how lucky you are?”

I have a friend Randy, who may not be in what some people would consider perfect shape.  He has aches and pains, but he appreciates nature so much that he will go out on wonderful hikes and share his photographs.  I appreciate what he shares even more as I know it’s not easy for him to do these hikes.  I know I enjoy seeing photographs of places I will never go to.  It’s not simply “I’ll put that on my bucket list.” No, there is no use in even imagining that one day I’ll go hike up mountains again.  Others have large bucket lists that realistically they know they will never fully complete. For a person with a chronic illness, we can’t even pretend we are going to climb Everest.  Not happening.

We instead focus on what we can do, we have modest goals.

What would be nice is if our Facebook friends got that our working full time is an incredible achievement.  Part  time is incredible for others.  Cooking a meal or attending a conference can be a major cause for celebration.  Even taking an interest in something we’ve neglected or a new activity is cause for joy, because it indicates we’re keeping that depression under control.

I remind myself that lots of humans enjoy their lives without discovering the secrets of Easter Island first hand (also the guides lie about a lot of stuff, I saw that on a documentary.  Thankfully if I can’t go to Easter Island I can learn about it via the internet!).  “If wishes were horses beggars would ride.”  Well, if wishes were cures poor Easter Island would sink into the ocean from the number of visitors.  We might be the beggars of life, but we have our successes to share also.

Why is everyone so HEALTHY! They are all having more fun....
Why is everyone so HEALTHY! They are all having more fun….

Just remember also, taking a Facebook break is a good plan for everyone if they find it is depressing them. Stepping back when something bad happens in your life works well for many. Others find the support and love of online friends helpful.  It’s important we know what works for us.

When You Have Plans and Illness Has Other Plans

Lights Are On But……

On Thursday, August 20th, I was diagnosed with focal epilepsy that has the potential to be generalized epilepsy. What that means is that only specific areas of my brain are having electrical malfunctions, but my EEG shows that there is a tremendous potential for it to spread and affect my entire brain.

I don’t have the kind of seizures you see on TV where the epileptic is flailing about and convulsing. Mine are more insidious. For anywhhere from 10 second up to three minutes, I check out and flip the switch for the Vacancy sign. I am peripherally aware of what people are doing or saying, but, for that time, which feels much, much longer,I lose voluntary motor control. No matter how loudly I scream at myself in my head, I cannot force myself to move. Someone else can move me, but the limb they pick up, simply flops back down. From the outside, I look like a marionette whose strings have gone slack. My eyelids also flutter like hummingbird wings in the middle of one of these episodes. At the end, I go right back to being fully alert and normalcy resumes.

No strings....
No strings….

My neurologist has started me on a baby dose of a long-standing seizure med called Lamotrigine. It’s supposed to regulate the sodium channels in my brain. Since I’m so sensitive to medications, I can’t start at what would normally be the therapeutic dose. I’m already having headaches and nausea but I’m not sure if that’s what is referred to as an “aura”, or if I’m experiencing an oft reported side effect of Lamotrigine.

Time is measured by perception.
Time is measured by perception.

An aura is basically a precursor to a seizure. It is also considered the beginning stage. The type of aura a person experiences varies from individual to individual. Mine is headache and/or nausea. Of course an aura can’t be the scent of chocolate chip cookies or the sound of rain on a tin roof. No it’s got to be unpleasant. But it’s basically an early warning system that tells you that, any time in the next few seconds to hours, you’re going to have a seizure.I lose track of time very easily between the point that I notice an aura and the time I have a seizure so my aura might only last a few seconds, or it could be half an hour. I honestly don’t know. So please don’t ask me.As if losing control of my body and misplacing minutes wasn’t bad enough, Florida state law stipulates that someone diagnosed with epilepsy cannot legally drive for a minimum of six months. So now, my husband and son are scrambling to arrange their work schedules so that neither lose their jobs. Public transportation is basically nonexistent in our little town and it’s going to be at least two more weeks before our son has his license again

Driving at home isn't fun....
Driving at home isn’t fun….

Of course I understand logically why the state has that law. It’s just really upsetting knowing that I’m causing problems for my family. And yes, I know I’m not doing it intentionally. Yes I know it’s not my fault. But (there’s always a “but”) if I had a normal brain, we wouldn’t have to deal with this.

I can already hear the objections to my statement because my friends and family have already said these things time and again. But that doesn’t keep me from being sad, angry and frustrated.

It will get better eventually. I have to believe that. If I don’t, I’ll start worrying about having to have brain surgery and some people get worse after that. Or I’ll start worrying that I’ll have to wait longer than 6 months to drive. I already have to put off going to school for another semester, but a year long driving restriction will put me even further behind on my personal timetable. I can already kiss my research goodbye because I’m not in school and I can’t drive to get over to the lab for experimentation. So, thank you Epilepsy, for sending me back to square one.

But that’s enough whining for now. I’m sticking to “It will get better”, because my other choice is “My life as a biology major is over.”.

*****************************************************************************************************************************

Thank you friend for sharing your story.  I think you express so well the frustration that is part of any serious illness.  It’s not our fault, but there is a feeling of guilt.  Our families have to help us, and I know the author well enough to know she would much rather be helping others, than being helped!  The illness rules all, timetables, vacations, plans all bow down to the illness.  I missed my daughter’s wedding, and part of me can never forgive my illness for that.  We have plans and lives and so much to do, and medication takes time.  Adjusting to it, finding out about the side effects, waiting to see if it works at all, what dose works…..this takes a very long time.  It’s hard on everyone.  

However, my friend is incredibly strong and has a great husband.  I wish there were awards for friends and family that step up again and again, not only to help us but to let us know we are loved.  I want to let my friend know, she’s truly worth having in my life!  I came to the conclusion we’re all slightly broken, no one is “normal” 100%.  I’ve learned so many illnesses don’t show on the outside.  This is why it’s so important when you meet someone, to know you can’t see what’s really going on.  Empathy is important.  

I would also like to share my other friend with epilepsy smells CHILI before she has a seizure.  She can never eat chili.  She can’t stand it, because of the association of the smell and a seizure.  When she asked her doctor “WHY CHILI?” he was “We don’t know why!”  Many thanks for writing this to the author!  I hope she is soon back driving (I’ve seen the drivers in Florida, trust me, epilepsy is the not the thing they most need to be worried about!), and back at school!  

Stuck in the Middle – A Little Empathy Please?

The Years Between College and Retirement

By Luna Golightly

I’m in my mid-30’s. I’ve had AI arthritis since I was in my mid-20’s. I’ve had four major surgeries and a stroke since I was barely 19. I tend to downplay my woes due to the majority’s reactions. Here’s a small sample of what people say to me about my chronic illness.

It's never easy to be in the middle.  A little empathy PLEASE!
It’s never easy to be in the middle. A little empathy PLEASE!

“Think about the suffering children. At least you didn’t suffer in your younger days.”

I DO think about sick children. Like you, it makes me sad. In fact, in my younger and more active days I volunteered to work with disabled children. I want to do it again, despite the pain in my joints. I’m currently looking into GOOD charities. It’s worth it just to see a child smile. That doesn’t make me ache less, though.

Tiny Tim, now he's get sympathy!
Tiny Tim, now he’s get sympathy!

“Think about older people not being able to get around.”

This is where I get a little selfish. I think about them and, like with children, it makes me sad. I also feel like I’m looking at myself in 30 years and it’s terrifying. Absolutely terrifying. Arthritis doesn’t get better. It just goes on and on and on and on and….

Seniors, when they had the moves.  Hey, they could think about the children, but no they get sympathy.
Seniors, when they had the moves. Hey, they could think about the children, but no they get sympathy.

“You should get a job and get out more often.”

I agree with this statement but I don’t really appreciate people pointing it out. I’m actively seeking a job. It really, really isn’t fun staying home all the time. It really, really isn’t. At the same time I get anxious about being not a perfectly reliable worker. So, thank you, Captain Obvious.

“You don’t need pain meds. I’m older than you and I’m not on meds and I get around just fine.”

GOOD FOR YOU.

“You should lose some weight. You’ll feel MUCH better if you drop just 20 lbs.”

Sigh.

“You should drink doctor-unapproved health drink and healthy supplements!”

No thank you!

“You’re just lazy.”

DON’T. Just DON’T.

Sick cats get more sympathy than the middle aged person with a chronic disease!
Sick cats get more sympathy than the middle aged person with a chronic disease!

 What I’m getting from this commentary is that I should just buck up because other people have it worse or at a different age. There are people who see me as weak, pathetic and whiny and I see these people as devoid of empathy and plain old mean. I have TONS of empathy for chronically ill people of ALL ages. I wrote this as a person far beyond childhood and far from retirement age. I don’t want pity. Never pity. All I want is the same empathy as people give to adorable children and cute old ladies or gentlemen.

Was devoid of empathy and plain old mean. I have TONS of empathy for chronically ill people of ALL ages. I wrote this as a person far beyond childhood and far from retirement age. I don’t want pity. Never pity. All I want is the same empathy as people give to adorable children and cute old ladies or gentlemen.

To Sleep, Perchance to Dream….

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

SLEEP

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

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

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

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

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

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

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

WE CAN’T SLEEP!

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

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

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

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

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

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

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

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

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

“So you are up late?”

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

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

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

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

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

“Hey, it’s great you are on here!”

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

“I loved that cat video you posted!”

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

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

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

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

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!)