Just in time.

“Ms. Dogkisses,”  the woman said, “Why do you wait until the very last minute to pay your bill each month?”

I looked at the clock on her wall.   In my world, 4:45pm was early.  Her office closed at 5:00.  It wasn’t only the time of day,  it was also the last day of the month that I could pay my bill without my auto insurance being canceled, so I was just in time.

I didn’t know what to say.  I guess I looked bewildered because her level of irritation immediately lessened.  She sat down at her computer and asked me to have a seat.  So I did.

I work under pressure.  Sometimes within minutes of a deadline.  It probably has a lot to do with chronic fatigue.  Maybe the pressure of a deadline gets my heart pumping and my adrenaline flowing and that’s the only way I can work!

She had a bowl of candy on her desk — with the good candy in it, like chocolate Kisses.  It was not your average office candy bowl with the hard peppermint candy or artificially flavored suckers.  I politely asked if I could partake and her warm smile made me feel like I could have the entire bowl if I wanted it.

Enjoying the chocolate I began to talk.  Sometimes, when I’m upset or nervous and must interact with people I talk too much.  I tend to tell the truth about what’s going on in my life.  I just start telling.  I usually manage to get a few laughs as I try and wrap my pain in humor.  Sometimes  it backfires and someone cries.

It takes energy for me to pretend I’m okay when I’m not.  Since my energy is endangered and possibly on the brink of extinction, I don’t try as hard anymore to make others feel better about how I feel.  I try to follow the social norms as much as I can, and manage pretty well most of the time.  Sometimes things get me, little things such as the normal greeting we are use to in America, “Hello, how are you?”

We are supposed to say fine and move on.  It’s easy to say fine to someone like the clerk at the register in the grocery store, but other times it’s harder.  The other day I was checking in for occupational therapy for my hand.  The clerk asked me how I was doing.  Well, I was very sick.  I was dizzy and thought it possible I might pass out before I could get upstairs.

“I’m fair,” I said, and I even gave a hint at a smile.  She was disappointed.  I get that a lot.  Fair is simply not good enough for many people.  I’m amazed at the responses I get from complete strangers because I said I was fair.

So, there I am paying my bill, feeling nervous that I interrupted this woman’s day by arriving just in time and I start talking and telling.  I tell the woman a few things about my life.  I tell her about my time.  I tell her that I have a son dealing with some hard things in life.  I tell her I’m overwhelmed.  I eat some more chocolate.  I don’t know exactly what it was I said that she most related to but she suddenly stopped typing.

She turned to me and asked if I would tell her more.  Her eyes had teared up.  I told her a little more.  Then she tells me.

She tells me how odd it is that I came in when I did and said what I said.  She tells me how she is completely moved by the things I said.

“I’ve never heard someone talk about these kinds of…” she paused, “problems or illnesses, whatever they are, the way you just did.”

I wasn’t sure how I had talked about anything other than being open about the way I felt.

She told me about what was happening in her life, which sounded a lot like what was happening in mine.  I listened.

Before I left her office she told me she had an epiphany, although I wasn’t sure what it was.  She said my timing had been personally important to her.    She was overwhelmed, as I was.  I don’t think she had a way to put that into words.  I guess that’s what she heard from me.  A way to talk about what is hard.

One thing that I think changes for those of us who live with chronic illness is time.    We are given time to reflect and think about life.   We also learn, as it seems we must,  how to talk about the difficult things in life.  This isn’t easy.  I believe that learning how to better talk about what is hard is part of our healing journey.

It’s hard talking about what is difficult to talk about.

I’ll probably continue to talk too much when I’m nervous.  I’ll probably continue being too honest at times.  I have tried to change this about myself,  but I can’t and I’m too tired to fight who I am.  I’ll most likely continue saying I’m fair when fine is just too far for me to grasp.

I’ve been told I wear my heart on my sleeve, that I cannot hide and that my eyes tell things about me.   I have in a way been forced by this part of who I am to learn how to talk about what people see; what I cannot hide and do not want to anyway.

Sometimes this part of being me works out alright.  My nervous honesty worked out alright paying my bill.  I think I’ve gotten myself out of a couple of tickets with sudden outbursts of utter truth.  I told the truth about why I was speeding (hard times!) and then another time about why I was driving — briefly without a seat belt — while tired in the middle of the night (hard times again!).   Both times the truth came out of my mouth faster than I could think.  Both times the truth was so bazaar the officers let me go.

Sometimes it’s good to talk about what is difficult to talk about.

The image of French Rose by, “The Graphics Fairy.”

I’m talking about Pain.

In the wee hours of the morning, around 3:30 am today, I woke up.

I was fatigued and had fallen asleep last night, forgetting to take my pain medication and my anxiety medication, both of which I need, the latter of which is for anxiety, but also manages a neurological disorder I have, an essential tremor.

I don’t remember the details of my waking in chronological order.  I remember having the thought that I should definitely update my will.  I remember being scared.  I was really scared.

The pain in my chest and lungs is what was the most scary I guess, but all of it was bad.  My entire body, once again, felt like it was on fire.  It’s more than fire though.  It’s more than a burning.  It’s so much more I don’t seem to have the words for it.

They call it fibromyalgia.  I wonder.  Sometimes I wonder what my doctor would do if I was his daughter.   He has three and often speaks of them.  He is a compassionate man and I like him.  So I’ve wondered this.

Would he take me to some fancy medical facility up north?  Could they help me?  I know he would pay for acupuncture treatments, which helps me tremendously, but I can’t afford them.  He once told me he would like to learn acupuncture himself.  I told him I needed him to keep on being my doctor instead of going off to acupuncture school.  He laughed.

But my good doctor was not here at 3:30 am when I woke up this morning nor was anyone else, except my dogs, my blessings from the universe.  They were here and their being here makes a big difference in my ability to remain sane in such a state as I found myself in this morning.

Not only was I in pain but the tremor was there.  My insides were shaking.  I was sweating a little.  The pain was so intense I had to lie there and get my breath enough to be able to get up and go take my medication.

I lied there for a few more minutes before getting up.  I guess I was in shock.  My lungs hurt when I breathed, which I could barely do.

I’ve been told that the pain I experience in my chest area and when I breathe is from fibromyalgia.  They tell me that the heart is a muscle, which I already know that, and talk about the connective tissue around the heart and lungs, but they have also told me it’s rare to have the kind of serious pain I have while breathing.

Without the medication I can’t breathe.  It hurts too bad.  This is scary and I don’t think the doctors are aware of how serious it is for me.  I guess I need to tell my doctor but what would I say?  He knows I live in pain.  He gives me medication.  Maybe I’m afraid he will say my pain is too much for him and would send me away.  Send me to some pain clinic where I’ll be a number and/or where they might not believe in fibromyalgia.

Yeah, I am scared.

The fibromyalgia doctor I saw twice said sometimes it does get into the lungs and that this is almost like a medical entity of it’s own.  Great I thought.

It’s scary because I think what if something happened?  I live alone and what if I forgot my medication and couldn’t get to it?  I have a phone and I would dial 911, but would they believe me if I told them I couldn’t breathe without my medication?

There is stigma around pain medication and medical professionals are not immune to it.

What would I say if I did dial 911?  I have fibromyalgia.  I can’t get to my medication.  I can’t breathe without it.

Would they think I’m a drug addict?  A hysterical woman?  A psychiatric case?  I wouldn’t be a “drug-seeker,” because I have the “drug.”

It took about thirty minutes for the medication to work.  I could breathe again.  I don’t remember now what all went through my mind during that time, other than thinking about updating my will, but I know a lot did.

It was a painful, scary and depressing experience, but it’s over…or is it?

From the desk of the disabled

Dan was funny and talented.  He wrote poems, songs, played the guitar and sang, sometimes performing  for various coffee houses or one of the locally somewhat underground etched out gathering places downtown.

Even with a few beers in him he remained smart enough to help  my teenage son with his algebra homework–- something I was not equipped to do.   He was also tall and handsome.  Everyone liked him.  They called him, simply, Big Dan.  He made us all laugh.  He was single and so was I.  We were the same age.  Needless to say, Dan and I had a passionate, though short-lived love affair.  He passion to party didn’t mix well with my responsibilities raising a teenager.

Dan and I often met in the center of downtown where the local teenagers, tourists and foot-travelers were having fun or stopping for a rest.  This was the downtown Asheville we knew before the 100 year lease on the Vance Monument ran out, leaving its reasons for existing to be annihilated by the local powers that be.

Our cultural downtown oasis would soon be over but that summer, before it all changed, Dan and I were wonderful lovers.

I often sat in the sun warmed grass around the monument while Dan played his guitar, an action he would later purposefully get himself a city citation for, due to his not having a license to play an instrument downtown.  He thought this was funny and looked forward to his court date.

“Have you applied for disability benefits?” he asked me one day.

I was taken aback.  “What for?” I responded.  The word disabled conjured up the image of my father.  He had been disabled. I wasn’t like my father I thought.

“How long have you been out of work?”  he continued.  Dan worked at a group home and was educated on the subject of disability.

“It’s been about three years,” I answered.  Hearing myself say three years did sound like a long time.

Looking surprised he said, “Depression is a disability and you can get help because of it.”

I remember that day.  I remember the grass.  I can still remember how it felt to sit there with Dan.  It felt really good.

I would slowly begin to realize many things about my life; the history of it; how and why it played out the way it had — and myself — I would in some ways meet myself for the first time in my mid-thirties.

It would be six months after that sunny warm day with Dan that I walked into the Social Security Administration’s local office.

“I have an appointment,” I said to the clerk.

“What are you here for today Mam?” she asked.

I leaned forward a little, self-consciously lowering my voice.  “I’m here to apply for disability benefits.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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My magic bell and fibromyalgia

intact, after the fall

My magic bell was the first thought I had after I hit the wet pavement.  Did it break I wondered?

As you can see from the picture here, it did not break!  Nor did my head which is good ’cause I didn’t have a helmet on.

“You know how it is with you.  Because of fibromyalgia when you get a localized injury it spreads to other areas,” my doctor said.

“Well, umm, how long do you think my back will hurt?”  I knew the question was one he couldn’t answer.  I don’t know why I asked. He just looked at me.  I don’t remember if he said anything.  I think he simply nodded his head to communicate that he didn’t have a clue.

It was my elbow that got cut open.  My shoulder hurt and my knee,  but after a few days the rest of my body began to hurt.  I was in a great deal of pain as I sat there with my family doctor.

I know you can’t see any bruises I told my doctor, but my body really does hurt.

With a tender tone that was much appreciated he said, “I believe you,” and I knew he did.  He believes me when I tell him I am in pain. This is a blessing when you have an illness that is not only misunderstood but also denied by some as being a true medical entity.

Fibromyalgia.  I think I am mad at this word!  This medical entity!  If I was superstitious or believed in demons possessing one’s body and soul, then I would sure be having an exorcism performed!  But I don’t believe in that, nor do I believe, at least in my rational mind, that I am being punished by God.

Having been brought up in the south with a strong Southern Baptist influence, I must admit that I do actually think and sometimes feel that I am being punished, which I believe is a direct result of what I learned about God and Jesus.

My grandmother told me that Jesus was watching me all the time and that he knew every single thing I did.  Well, that right there shaped and formed a large part of my world view.    I think this must get in a person’s brain forever, these things we learn as children.

When I am in severe pain or have been too fatigued to do anything for days on end, even think, sometimes I find myself lying in my bed, crying out to God and apologizing for all my sins.  I ask why and how am I supposed to do anything if I have this illness that at times renders me totally useless!

My rational mind tells me I’m not being punished and that I am a human being who is not immune to diseases or illnesses.   The pain I live with, the fatigue and the depression because of it all,  is part of the human condition.

I didn’t feel my elbow for the first minute or so.  I hadn’t felt it yet when my son said, “Mom, uhh, you did something to your elbow.”

I lifted my head attempting to get up.  “Mom just lie there.  Did you hit your head?”  I wasn’t seeing stars but walking back home with my son walking behind me with our bikes I couldn’t move my arm.

“I think there is a rock in there,” my son said and that’s when I felt dizzy.  A rock in my elbow.  The thought of it was nauseating to me.  I’m used to pain but not this kind of pain.

My doctor who is gentle and understanding was on vacation when I went to get my stitch out.  The doctor I saw was not like him at all!  I think she thought I wanted pain pills but I told her I had plenty.  I wanted to know if I had hurt my back because it was hurting.  I asked her to examine it, which she did.

“I think this is fibromyalgia.  It’s definitely tissue related.  You’re thin and when you have a traumatic fall like this, with fibromyalgia,  it can…”  I don’t remember how she worded the rest but I didn’t need to hear the words.   They are all the same.

If pain is due to fibromyalgia then basically this means it can behave any way it wants to.  It might be there a week or six months.  It might be localized or widespread.

Sometimes I guess I wish the doctors would say — oh this is something we can fix — and give me a time frame as to when I will be feeling better or recovered.

Update on July 11, 1010 The doctor says that a ligament in my left shoulder and a tendon somewhere around the bicep were strained and pulled.  It still hurts when I move it certain ways.  I fell on October 31st, 2009.

Fibromyalgia, Attitudes and Acceptance

Find Something Fun to Do

Fibromyalgia, as with any serious and chronic illness, can drastically alter your life.  Mine has certainly changed.

I had a business planting flower gardens to attract butterflies, which I totally loved.  Being a butterfly (and hummingbird) gardener was a big part of my identity.  There were many things I identified with and didn’t know how much until I couldn’t do those things anymore.

I remember when physical pain first started to concern me.   I would go out to my garden every day to do something.  One day I noticed how stiff my joints were.  I bent over and felt pain in my hips.  Then it started hurting in my ankles.  It was a new type of pain that I had never experienced before.

I’d been bitten by a little deer tick earlier that summer.  Little did I know this might change my life.

One doctor said I might have fibromyalgia, even though hardly anyone talked about the condition at the time.  It was nearly a foreign word.

Due to inadequate health care where I was living, I didn’t get to see a specialist.

I had dealt with arduous episodes depression in the past.  I had already in many ways, gone through a process of elimination as to what I identified with in life.  I stopped my gardening business and later went back to college part-time.

I moved to a metropolitan area after the tick bite that summer when the joint pain had started.  I believed the health care would be better and I think it has been.

I was bitten by another tick in 2005 and I was infected with Rocky Mountain Spotted Fever.

The doctors diagnosed me with Chronic Fatigue Syndrome and later, fibromyalgia as well.  By 2006 my life had turned upside down and illness defined every moment I lived.

Just about everything in my life has changed.

I can’t imagine, not as I write, what kind of job I could hold down with the levels of fatigue, brain fog and pain I’m living with.

I certainly can’t plant gardens anymore.

My hobbies are less active. My walks are slower.  I let my dogs walk me more, instead of me walking them for my cardiovascular workout the way I did before illness.  We go slower and stop more often.

Time is different too.  I can’t plan for events like I did before, which means I miss out on many things I once enjoyed doing.  I don’t know if I’ll be in pain two weeks from now or even tomorrow.  I could wake up so tired tomorrow morning that brushing my teeth will feel like I’m climbing a mountain.

I am grateful to receive disability benefits. I have health insurance.  It’s pretty hard making it on a low income.

Some people look down on those of us who receive disability benefits.  People complain about their taxes, but I pay taxes too.  Every day in some way I pay.

If a person can walk and talk then some people accuse her or him of being lazy, enjoying sitting home, doing nothing;  all just to get, “a check.”

The monthly income from disability benefits is important, but the health benefits and housing opportunities are a crucial part of disability benefits.

I was once a firefighter too.  Part of my identity had always been that I was physically very strong.  I was proud of this and enjoyed recreational activities, especially while raising my son.

Another part of my identity was being able to handle a lot of responsibility.  I was a single mother who worked hard and I burned the candle at both ends.

An expert in fibromyalgia told me this is the case with many people with this condition.  The majority of patients, he said, never were the kind of folks who sat around all day doing nothing.  Just the opposite for most of us.  We were athletic and go-getters.

I grew up in a very orderly and clean house, which is how I prefer things, but that’s one of those things that changes — preferences.  I’ve had to give up many of my preferences.

I hear all kinds of remarks from people who don’t understand what they can’t see.  I learned from having depression that having an invisible illness, such as fibromyalgia brings stigma and misunderstanding.  Many people don’t believe what they can’t see.

People say the weirdest things.

“I work in my yard (all day) because I have to.”

“I have to work everyday because I don’t have a choice.”

I stopped working because I didn’t have a choice.

“I wish I could get paid for feeling bad,” a neighbor told me.

“All you do is suck air,” a close relative remarked when learned that I was receiving disability benefits.

“You just get worse and worse don’t you.”  (Same relative).

“You sure do stay sick a lot.”  Lots of people have said that to me over the years.

Some people mock fibromyalgia.  Most people have no idea what it is.

Those of us suffering with invisible illnesses know that these attitudes and remarks are ignorant and not true, but they can still hurt.  Not only do they hurt, but they also cause us to withdraw into isolation.  We become alienated from society, our community and for some of us, from our family.

People with fibromyalgia often talk about having good days.  This means we have days when we wake up with some energy and less pain.  We can do more on these good days, which causes some people to think we’re faking illness.  If they see us on a good day, then we get accused of falsely claiming illness or disability to get out of work.

We’ve all heard people say, “You look just fine.”

A former doctor of mine once, during a frustrated conversation about pain, asked, “Where do you hurt?”

It was more of a statement than it was a question.  I didn’t know what to say.

“Well, my nose doesn’t hurt,” I answered.

She once referred me to a specialist for a digestive problem.  He was horrible!  He asked about the fibromyalgia, and then depression.  He was determined to believe that any problem I had, even the one I was there for, which was the result of an infectious virus, was all in my head; not neurological but psychological.

The doctor had suggested I go see the fibromyalgia specialist who had moved away.

“You look perfectly capable of driving four or five hours to me,” he said.  He failed to realize that I would have to go see the doctor and drive back home!

He continued and asked, “Did you walk here from the parking lot?”

“Yes,” I said, trying not to cry, but the tears were coming.

“Well, then you could drive four hours if you walked from the parking deck, and why are you crying?”

I had forgotten that I had instead ridden the minibus to the front door of the hospital from the parking lot.

“Why are you crying?” he asked again, sarcastically.

I told him I was sick, in pain, weak and tired.

I chose to change family doctors, never to see that specialist again and, my life has been much better ever since.

My current family physician understands fibromyalgia is a complex and painful condition.  He did suggest that I make a trip to the fibromyalgia specialist, but only when I was able.

I was finally able to go see the doctor.  I told him that my family physician wanted his advice.  He said to tell him he was doing the right thing by treating my pain.

He reminded me that it isn’t my fault that drugs, such as Lyrica and Cymbalta, made me sick.  Some patients cannot handle those drugs.  I’m one of them.  Some patients need tried and true pain medication, for pain.  Perhaps that is a little too simple for some doctors.

The specialist also said a patient should not be expected to live in pain when there is medication available to treat it.  He said it was neglect when doctors choose not to treat pain.

I told him about the remarks from my former doctors and nurses.  He said to stay away from those people adding with a compassionate tone and a bit of humor, “They are bad for fibromyalgia patients.”

He was a great doctor!

Even though we know more about fibromyalgia now than we did only a few years ago, there are still plenty of doctors and other medical professionals who will say just about anything other than, fibromyalgia hurts!

They’ll say things like, “It’s a label you do not want.”  They ought to say it’s a serious illness you do not want!

We’ve most likely all heard the phrase, “It’s a trash can diagnosis.”

I think many people do get wrongly diagnosed.  I’ve met a couple of people who said things like, “I had fibromyalgia for about three months.”

It’s hard to let go of all the things I used to love doing.  It’s hard accepting chronic illness.  It’s harder hearing hurtful remarks from family.

I have a few things I enjoy doing.  I started this blog, which I do so enjoy.

I love living with dogs.  They take me for walks and help me get through many hard times.

I have a “magic bike” and though I can’t ride it up hills or too far, it’s great fun feeling the wind on my face.  It reminds me of myself.

I hope if you or someone you love are living with chronic illnesses and conditions, that you can find something to do that makes your life easier and more meaningful.

Thanks for visiting Dogkisses’s blog.

dogkisses

Related Articles

• ME/CFS & Fibromyalgia: Families Are Biggest Skeptics & Critics of Patients (fightingfatigue.org)
• Stages of Adjusting to Chronic Illness (fightingfatigue.org)