Archive for the ‘fibromyalgia’ Category

Just in time again

Several days ago I’d placed the bill in the center of my desk, clearly visible without any surrounding clutter.   August 6th.  I had the number planted in my brain.  No biggie.  All I have to do is make a quick call to my agent’s office and the bill is paid.

Apparently though, it is a biggie.   Everything is lately.  I can’t concentrate on one subject very long, particularly bills.  The act of paying them makes my gut get all twisted and gives me anxiety.  It also makes my brain feel like it’s being squeezed.  I get nauseated and dizzy.  I go lie down and think maybe in a few minutes I’ll feel better and can pay the bill.

The best of a week passed and I kept trying to pay it.  I did call once and for the first time the number was busy.  I called back and busy again.  I went back to bed for a little while.  I don’t like going to bed during the day.  At least not regularly when it’s because I’m sick.

I like lying in bed on a cold winter’s day reading a good book.  I like to take naps when it rains or an afternoon spent enjoying the sweet company of love, but I don’t like this business of having to lie down every little while because I’m too tired to do things and too tired to think.   I have things I both need and want to do.

I woke up with anxiety today.  I sat down at my desk immediately realizing it was the fifth.  I remembered I needed to pay the bill.   While having my coffee I paid two other bills.  Finally, I saw the auto bill.

If it's not too late then it's just in time

too tired but not too late

I’ve been a customer there for over a decade.  I remember when I first went to their office, which is in the mountains of western North Carolina.  One thing I loved about living there was that all the businesses had flower gardens outside their offices.  I also loved the old beautifully restored houses, some of which were commercial property.

Today the agent answered when I called.  I usually talk to his secretary.  He’s a nice man.  I told him I needed to pay my bill.  I made a remark about me possibly being the only customer who waits until the last minute.

He laughed.  “Oh no,” he said politely.  “Lots of people wait,” and I heard him keying in my name on his computer.   “Yes,” he said.  “You have until,” he paused and laughed again, but in a nice way, ” until today.”

“Yes, I know,” I answered and laughed too.  Why not laugh?  I mean partly out of relief because for one thing, it doesn’t say the sixth.  It’s the fifth and that is today!

just in time is alright with me“Well, you’re just in time,” he said.

I couldn’t believe he said it!  That’s my line.  “Exactly,” I said to him.  I was happy he saw it my way.

In disability and poverty

by Dan Smith, Wikimedia Commons, CC Attribution-Share Alike 2.5 Generic

“I can’t hear myself think,” my mother would say.  “Ya’ll hush up,” or sometimes, “Turn that noise down.”   Whatever, “noise,” it was, we turned it down.  Sometimes it was my sisters and I cutting up or maybe it was music, but when my mother spoke, we listened.

My mother pointed her finger at us when she was mad, which usually put a stop to any misbehaving on our part.   Testing her was not wise, but I guess like all children do, sometimes we abandoned our fear.

She only had to remind us one time to look on top of the refrigerator, at least in the Summer, where we could often see a switch lying on the top.  If there wasn’t one there, then one of us had to go out and pick one.  We had to pick three to make sure we got a good one large enough for switching.

“Don’t come back with a skinny one or I’ll…”  I don’t remember anymore what Mother said she would do.  I think she always said she’d switch us twice.   She grew switch bushes, which I would finally learn are Forsythia, also called Yellow Bells.

Switching us wasn’t the only reason Mother had for growing switch bushes.  It gave her a desperately needed bit of privacy from my father’s mother’s hawk-like watch from her front porch.  Mixed in with the Forsythia were Redbud trees, which eventually did protect my mother from my grandma’s invasive view.

I only got switched once and I didn’t deserve it but then, neither did my sisters.   None of us owned up to the misdeed, since we really were innocent, so one by one, we each went into the bedroom and got the switch.  I was five.  I was not as willing as my older sisters were.  I was much more rebellious.  I made my mother chase me around the house outside about ten times before I finally had to give in and go inside.  She couldn’t catch me so she told me the longer I stayed in the hiding place I’d found, the worse it would be for me.

There was a time later when my mother thought I deserved a spanking but it wasn’t switch season.  She asked my dad to use his belt.  He took me into the back bedroom at which point tears began streaming down his eyes.

“I can’t do it,” and he called me by his nickname for me.  “You are too sweet,” little dogkisses.  You don’t deserve this.  Can you just cry and tell your mother that I spanked you with the belt?  Tell her I gave you two licks.”  I shook my head yes, which is exactly what I did.  He had added, “Just don’t do it again okay,” and I didn’t, whatever it was.  I don’t remember.

Our family was somewhat dysfunctional.

I’m sure there are people who could find ways to say the dilemma I’m in now might stem some from the switch bushes my mother grew.  I dare say though that there were much worse things we had to deal with than switches, which I’m sure gave birth to my having a few emotional challenges in life.  With that said, I try hard not to blame my parents for my life today.  It’s a personal choice I made in my late thirties.

My dad passed on when I was only twenty-five years old and my mother is seventy-five.  My heart tells me to do the best I can with the years left that I have a mother, so that’s what I’m doing.

Perhaps I’ll come back to this writing one day and see how the switch bushes or my recalling this part of my childhood relates to me not knowing what to do about my current problems in life, but as I write, I don’t see a clear connection.   I don’t know why these memories return to my mind on this day when I can hear myself think.

I know how it feels to need to hear myself think, or rather want to hear it.   I don’t know if it does me that much good to hear my thoughts too much of the time.

One thing I hear clearly and often is the thought, I don’t know what to do. Not only do I hear myself thinking it, I hear myself saying it out loud.

Talking to myself, out loud, scared me until one day I heard an NPR show on self-talk.  Apparently, this is quite common and is I guess, one of many normal responses to intense and ongoing stress.  Sigh!  What a relief I thought.  I love it when I hear that my craziness is normal and common.  I remind myself of this if I start talking when I’m home alone.  Plus, every time it happens, I am under a lot of stress.

Some days, like today, I hear the thought until the day is finally over.  Some of those days I get a few things done and some of those days, I don’t get anything done because, I don’t know what to do, or rather, I think that I don’t.

Today I had the thought (and spoke it out loud — to myself) with my first cup of coffee.  Then immediately, I thought well, why the hell don’t I know what to do?  I’m closer to fifty than forty.  When will I know what to do!  Or do I know and am just not doing it?  Like writing in this blog.  Is writing what I’m supposed to do I wonder or am I avoiding doing by writing?

I want to write but I need to do a million other things, like call the hand surgeon.  I keep putting that off.

There are lots of things I could do and some, like calling the surgeon, is something I’ll eventually have to do.

I could write a letter about how my son should have graduated from Community Resource Court.  I’ve put that off a long time.  He didn’t graduate because his psychiatrist wrote the judge a note saying he had not taken the antipsychotic she had prescribed for him.  He had taken it but his family physician told him twice during that time to stop taking it and to never take any kind of antipsychotic again due to poor liver panels while my son was taking the medication(s).

He attended the court for one year and did everything they asked of him, except for one thing, which was to continue taking the antipsychotic.   The psychiatrist who had written the note was gone fishing the day he should have graduated.  It isn’t the first time she’s been fishing during an emergency and the ACT team she works with doesn’t have a back up psychiatrist when she goes on these trips where her cell phone doesn’t work. She had told me to fire that doctor anyway.  They sent my son back to criminal court.  I couldn’t believe it.  I think it’s an injustice and I doubt my writing a letter would do much good.

The judge asked me to stand up.  My son had been charged with possession of,  “half of a marijuana cigarette,” and as a result,  landed in the county jail for 28 days!  He had attended CRC for one year, and so did I.   None of that mattered though.

“Do you think your son is competent to understand this charge?”  the judge asked.

I can’t speak fully to what my son thinks about his charge.  I would be betraying his privacy.

What if I had said no?  That would have meant a judge’s order for a psychiatric evaluation, which would have meant an involuntary commitment at our state hospital, which is unstable and as a result, dangerous.  My saying no could have caused him to lose his rights, get locked up in that place until some really crazy doctor decided my son was rehabilitated.

“Yes,” I answered.  “My son is competent.”

His gavel came down and the day was done.  My son was charged and free to leave, which we did.

I could write about the injustice of…

Sigh…  There are about ten letters I feel like I need to write about injustices regarding my son.

Then of course there is me and my life.

I could write a letter to the teaching hospital where I receive most of my health care.  I could ask them if they would offer their, ‘charity care funds,’ which I qualify for, to pay their acupuncturist.  Four of their specialists have written me prescriptions for acupuncture, due to my sensitivity and adverse reactions to certain medications, along with a family history limiting my choices in the treatment for some serious health issues I have.

I could write a letter to my family doctor asking for Home Health services or be brave enough to finally ask for a handicap sticker for the days when I’m too tired to walk.  There are many days when I’m too tired to actually walk into the grocery store, much less walk around and shop.  I’ve gone to bed hungry a few times because of this, but not for too long.  I manage to keep up, obviously as I’m alive and writing, but sometimes, I’m hanging on by a thread.

“It makes sense,” my doctor said, after I asked him if people with fibromyalgia and/or Chronic Fatigue Syndrome qualified for any home health services.  He said he has never known anyone with these illnesses to ask for these services.  I wasn’t surprised but I’m quite curious.  Chronic Fatigue Syndrome kicks my ass.  It puts me down like a sick dog!   Why haven’t these intelligent well-respected medical doctors considered the notion that CFS and severe fibromyalgia patients might need some home health care services?  I wonder too why we, the patients, haven’t inquired about these services.  Are we ashamed to ask?  I’m ashamed to ask for a handicap sticker, even though I know I deserve to have one as much as anyone else does.

I have dogs and I feel like people will say if I can manage to take care of them then I must be able to do everything else, but this is not the way it is.

I’ve been blessed the past several months with neighbors who are helping me walk my dogs regularly.  After two accidents I don’t know what I would have done without their help.  I can take the younger dog to a nearby dogpark and sit on the bench while she exercises, but sometimes I’m too tired to drive there.  Our older dog is anti-social.  Can’t take him to dogparks!

In between my trying to figure out what to do today, I went online and visited a site about invisible disabilities.  It was wonderfully resourceful focusing on educating and informing people about how they can better understand and support a friend, family member or loved one who lives with an invisible disability.

I could send my family one of their brochures I thought, but then I thought better of it.  Here sis or bro, here is a way you can be more kind to me.   I don’t think so.

I could go through all the bills.  Bills I can’t pay.  Put them in a shoebox labeled unpaid and can’t pay, then store it in the closet.

I could call our MD and tell him my son is not doing so great, but what could he do?  I could call the housing specialist.  I could call the corporation who just bought all the properties around here that used to be owned by non-profits who rented to low-income people with disabilities.  I could tell them I’m still waiting  on getting all the paper work they’ve asked for.

I could call the federal weatherization program who would insulate my apartment, which would lower my power bills.  I could call the Catholic Social Services and ask if they might offer a little towards some of my utility bills — if I could find their phone number.  I could look it up in the phone book, if my brain worked right.

I could call my landlords and ask them to do some things they’ve promised to do but haven’t done.

I could call and cancel the doctor’s appointment I have at the ENT clinic.  I mean why am I trying to get help with my ears, while my disfigured finger hurts, I need new eye glasses and what feels like a million other things that I need to do?

Then, I recall the reason I called the ENT clinic.  Some days I can’t hear myself think because all I hear is ringing in my ears.  Aside from the ringing I can feel noise.  I’m hyper-sensitive to sound and sometimes it hurts.

Oh!  I know what I could do!  I could pay my auto taxes, get the receipt, oh wait!  I’ve got to have my car inspected before I can get my tags renewed.  Great ’cause the check engine light is on again.  It’s been on since my brother-in-law sold me the car four years ago.  I’ve spent hundreds of dollars every year getting it to pass inspection, and the engine light just comes back on.

I could call him and tell him to fix my car!  “It won’t be a problem,” he’d said.

There’s the power, the lights, the phones, this internet connection, two loan payments, a water bill, taxes, inspection, tags, gasoline and blah, blah, blah.  Oh yeah, food.  I forgot about that.

I bought food the other day.  I felt guilty for buying food!  How will I pay the bills I thought?

I did get one bill paid today.  I didn’t cancel the doctor’s appointment, which I don’t want and desperately wish I hadn’t made it.  I’ve canceled many of my medical appointments over the past year or more.  I managed to get my son an appointment with a private doctor who I know and trust.  This gives me a little hope, but I’m used to things blowing up in my face, most things in fact, so I don’t let my hopes get too high.  I did do things that needed doing today.  I was a mother, actively, for a little while.  I washed the dishes.  I did a lot, along with agreeing to more than I wanted, like providing transportation for a job the ACT team promised.

Mostly, what I do is try to manage the anxiety about all that I need to do, while feeling quite confident that I can’t get it all done.  I’m beginning to wonder if I’ll ever get some of these things done.  I managed to sit outside in the shade and organize two baskets of mail.   Now, the bills are neatly stacked, and I guess they’ll stay that way for a while.

Still, there’s anxiety.  There’s so much I feel like I need to do.  Some things I can’t do but I can’t not do them either.  Some things I could do if I could concentrate or feel what I have to feel to get certain things done, such as writing about the psychiatrist’s fishing trip.

I know what I’d like to do.  I’d like to go camping like we did every summer when my son was growing up — when I had lots of energy — and more money.

I’d like to sit high on the mountain, at a nice campground of course, with a really nice mattress to sleep on, which I have, and I’d like to stay there until the heat has gone from this place I call home.  I’d like to wake up to the sun shining through the trees on my tent, drink lots of dark coffee, listen to the sounds of nature, rest, read, rest more, eat, lie on my back and watch the night sky and then, rest more.

I don’t know what to do, I heard myself say right before bed.  Today, I sure could hear myself think, all day, all too clearly!


Photo by Dan Smith


Maintaining power

quitclaim, by IconDoIt

“You can’t maintain,” the social worker said.

“I thought you helped people who couldn’t maintain,” I responded, knowing my words were futile.

I regret going to the social services yesterday.  I felt good when I woke up.  I had some energy and a smile to go with it.  I took a shower and put on something I enjoyed wearing which I think was a mistake.

I wore a pair of blue jeans.  Maybe it was because they were Capri length and not the faded and lately, baggy, jeans I usually wear.  I can’t recall which blouse I wore but I remember wearing a necklace and earrings.  I need a hair cut so I used hairspray to keep my bangs out of my eyes, which I don’t like using.  Hairspray makes my hair sticky or stiff and I’ve never liked it.

I’ve been so stressed lately that I can’t find things, like my hair clasps I would have worn instead of using spray.  Maybe my hair looked too stylish since it was all puffed up.

I wonder if I looked too nice to be a good candidate for assistance with a large power bill — assistance that she said was available and that I qualify for.

I told her I had been sick but she gave me a weird look.  The kind of look that implies she did not believe me.  I told her I have Chronic Fatigue Syndrome and Fibromyalgia but she didn’t respond.

“I’m filling in because everyone is in court,” the woman told me, which I thought was kind of odd.   Every social worker in the entire county were all at court at the same time.

“I’ll take the application and when the social worker returns I’ll give it to her,” she said.  Her next remark surprised me. “You should be aware though that if someone comes in before she gets back and ask for the same help they may get the funds instead of you.”

“But I’ve just applied,” I asked,  “what do you mean?”

“Because you’ve stated that you don’t have the funds to pay the remainder of what we can’t help you with,” she said as she kept on typing.  “If someone comes in asking and they say they can pay what we can’t pay then we will give them these funds.”

“I will pay the remainder,” I told her, “even if I have to put it on a credit card.”

The social services say that it is okay for a person who lives on a low fixed income to have a credit card.  I’ve only used mine a couple of times.  I’ve used it for a car repair, one $40.00 trip to the dentist, and once at the grocery store.  I told her I had made a $25.00 payment on it this month.

“Using your credit card to pay would only put you in the hole more,” she remarked.

Duh!

“Yes, I realize that,” I said politely.  “I’ll use my credit card to pay before I let them shut off my power service.  Wouldn’t you?” I asked her.

“Yes,” she answered.  We made eye contact.  For a moment I thought that maybe she understood the position I was in.

The department of social services also allows a cell phone and cable vision as an expense, the latter of which I’ve never had, not in my entire life.  My cell phone however has been a lifeline when my son has been in a crisis or a hospital.

Once he got lost and literally ended up in the middle of our country.  He was on that list of people who have a mental illness and are missing.  My mom came here to answer the phone if he called, while I was in the mountains with detectives searching the woods where we thought my son may have camped before getting into a van with a man who took him all the way to Illinois, a long way from North Carolina.

My son called home from a phone booth but he didn’t know where he was.  The driver of the van had abandoned him because he said my son did not cooperate by not panhandling in the parking lots of Walmart, which is apparently a common practice for some people.  They travel the country and not only panhandle in Walmart parking lots but they sleep there too.  Apparently both are legal.

My mom was as stressed as I was and failed to get proper information from my son when he called.  She called me on my cell phone but all she knew was that he said he was at a Kroger grocery store.  She did not know which state he was in.  She was able to dial *69 and get a number.  The detectives I was with helped locate the number.  We called the police there and they found my son.  I wired the officer money to buy my son a bus ticket.  He arrived home two days later.

I wonder how many psychiatrists I’ve spoken to over that cell phone throughout the past eight years while I’ve been an advocate for my son?  I bet if I had one dollar for every one I’ve talked to I’d have enough money to pay my power bill.

I use the cell phone for my own doctors and nurses too.  Anyone who lives with a chronic illness might well know that if you leave messages for doctors and nurses, you really need to be available when they return your calls.  My cell phone has been pretty important.

Without the cell phone I’d be at that phone booth and I can’t recall what state I was in when I took this picture.  Phone booths are hard to come by.

I think if cable vision is counted as an expense, then a person ought to be able to choose between that and an internet connection.  It also seems like an internet connection would be more useful than cable vision to families with children in school who need access to do homework.

I don’t know what our social services thinks about people with disabilities having an internet connection.  They seem to think cable-vision is more important and it cost a lot more, so this doesn’t make sense to me.  I’ve learned through experience that an internet connection for me is a lifeline, which cost me about twenty dollars per month, a lot less than cable.

I don’t have a car payment, thank goodness, but I have repairs.   Social Services will allow for repairs but won’t let me use the expenses I’ve incurred because I put it on my credit card.    Even though they allow a person asking for one-time assistance to have a credit card, they don’t include the monthly payments in expenses.  Go figure.

“I will find the remaining funds if you can help me and I need for you to tell the social worker this when she returns,” I told the woman taking the application.

“We have at least one hundred dollars we can pay towards your bill and possibly two hundred,” she said looking at the computer.

“That would be very helpful,” I said.  “Even if it is one hundred dollars, I’ll pay the remainder.”

I can count on one hand the number of times I’ve asked social services for help during the seven years I’ve lived here.  Each time has been a difficult experience.  It isn’t swallowing my pride that has been the most difficult part but instead is the things some of the social workers say .  I do remember one time when a social worker helped me without preaching at me or putting me down.  I couldn’t believe it.  She said something like, “Wow, how do you make it each month?”

Exactly I thought!  Exactly.  I’m fairly creative when it comes to, “making it each month.”

Usually they ask, like the woman did several times yesterday, “How did you get in this position?”

I should have said something like, “Well, how much time do you have because it all started about ten years ago.”

The social worker finished the application but she once again asked me the same question that I thought I’d answered at least twice already.

“I just don’t understand.  I’m looking at your expenses and they are less than three hundred dollars.”

“You are forgetting the power bill, which is $255.00,” I reminded her, again.

“Oh.  That’s right.”

Why the hell did she think I was there?

“Yes.  That is almost half of your income,” she reminded herself.  “But you say you can pay if we don’t.”

“Yes, but on a credit card,” I reminded her, again.

I signed the application and left.

I came home and immediately lied down on my sofa.    I’d eaten a piece of string cheese on my way there.  I had felt so well when I woke up I was actually looking forward to coming home and eating lunch.  I had lost my appetite though.  I was depressed from the interaction.  Maybe they would help me though, I thought, so I rested.

My cell phone rang and I knew it was her.

“We can’t help you,” she said immediately.

“Why not?” I asked.

“Well, because you told us you have a way to pay.”

“But you said I had to have a way to pay the remainder to qualify for the help.”

“Well, we still have questions about how you got yourself in this position.”

“I’ve had a power bill that has been over half of my monthly income for three consecutive months,” I reminded her, again.

“You can’t maintain,” she said.

“What?” I asked.

“You can’t maintain.  You’ve been in this position before.  I’m sorry.”

“Well, maybe if I lived in a tent I could maintain,” I told her.  She was starting a sentence when I hung up on her.

I didn’t care if I was rude and I still don’t care.

I don’t need someone reminding me that I’ve found myself in these shoes several times in these past eight years — and most certainly — I will not stand and listen to someone who says it like I’ve committed a crime when that person doesn’t have one suggestion as to preventing this situation in the future.    My apartment is not insulated well and as a result, I pay.

I have maintained! I’ve never had any utility shut off. I’ve also camped enough to know I can live in a tent, which I might do before I would ever ask those people for help again.

I believe if I had dressed differently and lied, although I’m not sure which part I was supposed to lie about, that I would have received the assistance that is there for me.

I have a feeling that the people who get help know what to wear or rather, what not to wear, what to say or not say, and how to act.

An acquaintance of mine called me late yesterday.  She asked how I was doing.  I told her about my experience.  She’s been in my shoes, only not sick, just poor.  She said I should have never told them about the credit card.  She said I should have said I could pay out of my checking account and then they would have helped me.

I  didn’t know the right answers, but the right answers are not the truth.

I know what I would have liked to have said, but I won’t say it here.

Sometimes this world seems harsh. Sometimes, it seems like a hard place to be.

“You can’t maintain.”

For some reason that remark has stuck in my brain.

The thing is, is that I can maintain.  I do maintain and will continue to do so.

 

Fibromyalgia, family and a funky chicken?

invisible pain and fatigue is a long hard row to hoeWe don’t talk too often and sometimes I simply don’t know how to communicate with my relatives.

I recently received an email from one and the subject line read: ” You must do this!!!”

I think I thought there was some type of national emergency or something.

It was an email asking people to pray for people with cancer and then to forward it on to others.

Well, I thought, who would I send it to?

Most people I email to are really busy.  I feel like I’m asking too much of their time if I send them emails asking them to forward a message, although, now that I think about it, people do that with me for causes they believe in all the time.

I didn’t think much about not sending it on as requested and then I saw a note at the end of the email — 93% won’t forward.

I knew I’d be one of the 93%, which kind of didn’t feel too good.  I felt like I would be in a group of people who didn’t care.

Maybe it was the subject line of the email–You must do this!!! —  along with the three exclamation marks that touched on my one fragile nerve I had left by mid-day.

I realized quickly that the email bothered me.  I was taking it personal, or at least in a way it was not intended, I don’t think.  It had nothing to do with my level of care about people who have cancer, along with their loved ones who are grieving too.  I’m sure I care and I did take a moment to say a prayer.

My mother has survived breast cancer and I’m grateful to modern medicine for this because she had about seven or eight aunts who all had breast cancer.  They were not as fortunate to have the treatment that my mother had.

My father died after a long bout of severe pain from cancer.  My grandmother died two years ago, also in severe pain, with a type of bone cancer.

My beloved Free girl, my canine companion, had to go due to bone cancer in her leg or from all the pain pills, the latter of which made her sick.

My friend Sonny, who passed away one week ago today, had throat cancer.  They were able to remove the tumor but the radiation left his throat too dry to swallow, leading to his having to use a feeding tube, subsequent weight loss and weakness, all of which shortened his life.

I am no stranger to loss as a result of cancer.

I care.  I care about people in general.  I hurt when someone I care about and or love is hurting or sad.

I feel sad for people who are suffering.  People with terminal illnesses.  People living in a war or are watching family members being abused or killed.  I feel sad for people who are starving or sick without access to medical care.

I feel sad for all the broken hearts in the world.

My adult son who has a huge place in the center of my heart has suffered many times and he is a young man.   My heart has broken many times for him and for the other young men and women I’ve met through him who I’ve seen suffer.

I feel sad for the lesser injustices, such as my ten-year old friend who wishes for things, such as an end of the school year celebration, but who graciously accepts that her family doesn’t have enough money to celebrate in a way that  a young person might dream about.

Sometimes I care so much it hurts and I don’t even know how to feel such strong feelings.

I felt selfish by the way I was experiencing the particular email from my sister.  The three exclamation marks felt like — well hell, I don’t know what it felt like, but it wasn’t a nice happy feeling.

Maybe I wish family members would take a small interest in  learning a little about Fibromyalgia and Chronic Fatigue Syndrome.  I wish they were able to understand the seriousness of the illness and acknowledge it.

Sometimes I think they are afraid of acknowledging how serious my illness is because if they did, then they might feel some sort of obligation.

I’ve been what you can safely call sick since 2005.  Many of my symptoms were magnified over the past year.   Two accidents and a narcissist had a strong impact on me, my health, and my life.

If folks don’t believe much in fibromyalgia and think the term Chronic Fatigue Syndrome is nothing more than the way they feel after a long day at work, then it isn’t logical to expect these same people to take the term narcissist very seriously either. 

People who don’t believe you are sick when you are, or who may believe it, only they think it’s because of something else, not what you have been diagnosed with and what you know is true, are not showing respect.

Basically, if you don’t have cancer and haven’t been told you’re dying, or if it isn’t an illness people are familiar with or can see, then I believe many people write it off to being psychological.

When I read the email of what I “must do!!!” — I felt a surge of emotions.

What about me I thought? I am aware, as I think many of us with fibromyalgia are, especially since other people will often remind us, that it is not a terminal illness and for this I am certainly grateful.   Should I be more grateful than a healthy person should be?  Aren’t all us who don’t have a terminal illness grateful for that?

Knowing I don’t have a terminal illness indeed offers me a sense of gratitude and feeling gratitude is a healing experience.

There are plenty of days when I feel like this illness is killing me.  I get scared of the future too.  There are days when I’m so tired, so incredibly fatigued, that I feel like the walking dead.

Brain fog and physical fatigue together, plus pain all over my body, even with strong medication, gets me feeling a bit… depressed.

This illness has taken my career and any confidence I  had about future earning potential.  I can’t do a great deal many things that most people take for granted.

My friend, Rose, who has a health blog, Seeking Equilibrium, is too cool.  I shared with her my feelings and she re-wrote the text in the email asking for prayers for people with fibromyalgia.

I wasn’t brave enough to send the revised email, until I got the same email from a cousin, and then saw that the original one came from my other cousin.  I was struck with courage, opened my email, added some recipients and clicked send.

I doubt very seriously if anyone forwarded an email asking for prayers for people with fibromyalgia.  Maybe, but my gut feeling tells me probably not.

My mother came to visit a week or so ago.  She came to help me out a little.  I know she wished I’d had more free time, but I didn’t.   I told her I was trying hard to finish a project and she understands it was important to me.

My mother wanted to have time with me that I simply didn’t have that week.   She wanted us to have a fire outside, but I did not have the energy at the end of the days.  I too wanted this.  I wanted to sit around the fire and see my mother happy, which would have made me feel happy.

“We didn’t get to spend any time together,” she told me after five days of being here.  “I wanted to go to the thrift shop(s).”

I felt guilty.  First of all we had spent time together.  I told her she would be walking into my life as it goes during the week.  I have many ongoing obligations and people don’t realize how much of my time and energy is spent on fulfilling them.

Then too, going to one thrift shop in a day is my limit and even then I can’t stay long.   I can’t walk around a store for more than a few minutes before pain sets in.

Now, I just say I’m sorry to my mother when she wants to go shopping and I’m too tired.   It’s time like this when I feel like a disappointment.

The disappointment isn’t only about her though.  One of my favorite things to do is thrift shopping.   I miss it too.

In pain, fatigue, sadness, grief and loss, I’ve found a few ways to live my life the best way I can — with the knowledge, tools and abilities that I have in this moment.

I recently decided to try a little harder to actually live my life.  I may only get moments in time, but I’m getting them.  I hope those moments will turn into days and weeks.

I’m finding laughter again, which is excellent medicine.  I heard myself laugh today.  The sound of it lingered in my mind for a minute or so.  I liked it.

I’ve gotten several pictures of my son now, smiling again, which seemed lost to the lens of a camera for a long time.  I’m enjoying music again.   I’ve made some new friends.

dancing like a funky chicken is good medicine

funky chicken

I’ve even learned a new dance that my ten-year old friend and I came up with, “The chicken dance,” she calls it, which is easy because when I do it, she and her sister laugh so hard they quickly fall down on the sofa, so it only lasts a second or two at each go.

I’m still tired though.

Click on image for a little history of the chicken, from IconDoIt, the blog.

Image of Gardenlady by, “The Graphics Fairy”.

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dogkisses.

Related posts from Dogkisses’s blog:

Without the label of fibromyalgia

Fibromyalgia Misunderstood


Without the label of fibromyalgia

why do some people dislike labels when they help us understand what is going onWithout the label of fibromyalgia, I’m a human being in severe pain.

I am a human being who feels pain 24/7, 365 days a year.

Without the label of Chronic Fatigue Syndrome — I am a human being who is more than simply exhausted.

I’m not talking about the kind of tired I used to feel after a hard days work.  Not the kind of tired some people say I might have, “because I don’t run ten miles a day like they do,” or “because I write,” or “because I need to get out more often.”

People who think they know why I’m tired or in pain, who don’t know one little iota of truth about fibromyalgia and Chronic Fatigue Syndrome, are people whose opinions mean zilch to me.

I was a firefighter.  My training made me so tired I had to go to the doctor.  This was before any diagnosis of fibromyalgia or Chronic Fatigue Syndrome.  This was before Lyme disease in 2003 and near death from Rocky Mountain Spotted Fever in 2005.

I got over being tired after that training.  The doctor, who is a homeopathic physician, told me to rest and drink fluids with electrolytes.  So I did and after a day or two,  I could run with the best of them again.

Without the label of fibromyalgia, I am a person who has severe problems sleeping.  I never get good sleep.

Without the “label,” I am a person who sees days where taking a shower wears me out.  I get all nice and clean.  I get dressed.  I fix my hair.  Sometimes I even put a little makeup on.  Then I take my shoes off and fall on my bed from sheer exhaustion.

Without the label, I am a person who cannot live an active life.  Some days I’m a person who spends the day in bed, not sleeping, too tired to read, too tired to move, who just lies there like the living dead.

Without the label, I am a person who strives to make it through one trip to the grocery store and 98% of the time I can’t get all that I intended to get.  I could if I used one of the riding carts or whatever they are called, but I’m not there yet.  I’m not at a place in my mind where I feel I’m ready to reveal to the public how disabled I am by FATIGUE.

Without the “label” I am a person who hurts when I take wet clothes out of my washer.  I am a person who hurts when I push a vacuum cleaner.  Many days, I’m a person who feels like a plastic bag weighs ten pounds.

Without the label, I am a person who gets so tired that my brain seems to collapse inside my head.  This is called, brain fog, but some people can’t take labels.

Without the label of brain fog, I’m a human being whose brain stops functioning and I have a hard time adding 2 + 2!

Without the label, I would be quite confused as to what the hell is happening each and every moment I live!

Too tired to say how tired I am of people who don’t know squat about what it means to live with Chronic Fatigue Syndrome and the pain of fibromyalgia.

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

Image of ferns by, “The Graphics Fairy”

I chose the image of the fern because even plants have labels.  I stand on both sides of the fence, or perhaps I’m the FenceSitter, regarding the use of labels in medicine.   Labels are useful but can be abused.  Labels can be used to identify a whole person and I believe, those of us who have an ongoing health issue, illness(es) or disease(s), know that we are more than a label.  We remain fully human.

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When being too tired is an emergency

night light

I write with little energy.  I cannot communicate with my favorite blogging friends for now.  What I thought was a severe episode of chronic fatigue syndrome and with it, some serious brain fog, is unfortunately more than this.

I went to the ER because I was exposed to pneumonia followed by a weird chest pain with a new cough.  The fatigue had worsened and the brain fog turned into confusion.  I couldn’t do my paperwork.  I got scared.

I don’t have pneumonia but was admitted to the hospital so they could watch my heart, which they did.  They watched it run slowly all night. It stayed between 45 and 50 beats per minute until the nurse came in at 3am with the maintenance man to fix the heater’s thermostat, which wasn’t broken.  It did go up then but not for long.

They discharged me early, partly because I had begged.  I can’t leave my dogs.  I have bills to pay.  Things that must get done this week.  I agreed to follow up with doctors, which I’ve done as I write.

Right now I’m like my sister’s cell phone was a few minutes ago — working with only one bar.

My discharge papers reads, “Sinus bradycardia.”

What I know is I’m dead tired.  I got to where my fingers couldn’t type.  I couldn’t pick up the telephone when it rang and it was beside the bed!  I couldn’t do anything.  I knew I had to seek help.

After monitoring my heart all night, then having a few conversations with a very good doctor, he decided that the slow heart rate is a nutritional problem.  He believes that I’m not eating enough.  He may be right.

When I said I had a broken heart, well, I guess it goes to show that our emotions are very much a physical part of being human.

I had a lot of grief over the past year.  I had many changes too.  Lately, things have actually been changing for the better, but I guess life gave me a bit more sadness than my heart could take.

The sadness I have gone through reminds me of the Kudzu that grew in the mountains where I lived, as well as where I live now.  You pretty much have to go in and blast the foundation to get rid of this plant.

The new leaves are supposedly nutritious and can keep a person alive.  I think there are medicinal uses for the plant, but of course, I can’t remember what they are.  I’m running on low.  I do remember that you can only eat the fresh leaves in the springtime, otherwise it is a poisonous plant.

I had myself a session with a psychopath, exposing me to an awful growth of toxins.  I ate from the autumn vines with the darker bigger and poisonous leaves and they made me sick!

Hopefully, and I am hopeful as I write, I think simply from having written, I will heal and very soon.


Fibromyalgia, Severe Pain and Injuries

It hit my legs first.  I felt it deep in my bones when I lied down.  The pain felt like the beginning of a tooth ache.  I changed positions and fell asleep.  Several hours later I woke up with my eyes wide open.  The pain was intense.  I thought I was having a nightmare, but I wasn’t.  It was real.

"Yikes" Fun image by Leslie Sigal Javorek at IconDoIt, the blog!

YIKES!!!

IMAGE CREDIT: Leslie Sigal Javorek, IconDoit, the Blog!

The severity of pain lessened dramatically when I got up and moved around.  I was in that state of mind where I wasn’t fully awake, yet like a dream, or nightmare, I had more of a feeling than a detailed memory afterward.

fibromyalgia severe pain invading every cell

The memory of the deep pain I woke up with evoked an image in my mind.  I imagined thousands of little creatures; their legs strong and claws sharp; grasping and gnawing at the fibers in my legs; having invaded every cell.

By mid-day my upper body started hurting again.  By the end of the day, I found myself crying.  I realized there was more going on than the regular level of pain I live with.

I put Lidoderm patches on the places that hurt the most and took breakthrough medication; extra pain medication that I don’t normally have to take.

I didn’t know what to think.  Was it my lungs or the connective tissue around my lungs, I wondered?  The pain in my upper back, like the pain in my legs earlier that morning,  was  so deep and inclusive that I couldn’t tell if it was bronchitis or muscle pain.  My muscles felt bruised.  Breathing hurt.  I hurt all over, inside and out.

The patches and extra medication helped and the next day I was able to take the dogs for a walk.  My young, but strong dog, pulled my arm.  A surge of pain moved through the center of my back, which is when I remembered a dog walk two days before this new pain hit my body.

The dogs had spotted our neighbor.  They adore her and hurled forward when they saw her.  I held the leashes, running behind them for ten or twenty feet.  It had hurt, but the worst of the pain was yet to come.

One event like this can cause a flare up of fibromyalgia pain that might last a couple of days or a few weeks.  Injuries can cause severe flares and pain levels to permanently increase.  

Due to post-exertional pain and fatigue, the smallest of chores or tasks can cause days of illness.  I’m not good at pacing because the ideal rate of speed is so slow, but I’ve learned the consequences of over doing things.

Moving into my apartment caused me so much pain that I had to go on a different and stronger medication after it was all over.  Planting five plants in my yard two summers ago put me in bed for the best part of a month.  Falling from my bicycle on Halloween caused me to go, “on a tendon and ligament adventure,” as my doctor remarked.  Not long after the bike accident, while cleaning a ceramic cabinet knob, I endured severe and deep cuts to two fingers. 

Yikes!

Injuries that other people get over fairly quickly can cause flare ups and become chronic pain conditions for a fibromyalgia patient.

Pain is pain.  Living with it is hard and sometimes, depressing.  Pain can be physically, mentally and emotionally completely consuming.

I cannot imagine not having medication that relieves the intensity.  I simply can’t.  I seriously think that my body would probably go into shock or I would have a heart attack from pain.

Before Medication…

I took my dogs along with me on a camping trip to one of my favorite places in the mountains.   A friend had come to help me set up camp.  It wasn’t easy and it rained, but I knew the weather would clear soon.  The morning would bring beautiful bird songs, close views of the white-tailed deer who legally own the place, and because of the few number of campers, the sounds of nature would wake me upon the first shadow of light.

I woke up around 2am in more pain than I had ever felt before.  I sat there for several hours, literally crying in pain.  Before meeting the beautiful morning I had anticipated, I had concluded that I could not continue to live with the pain I was experiencing. 

My thoughts had gone downhill for sure.  I felt that anyone who expected a person to live with that kind of pain seemed inhumane.  I wanted the same compassion as my dog had been given when we learned she had bone cancer.  My tail wasn’t wagging anymore.  I wasn’t laughing anymore.  Food didn’t matter anymore.

That weekend changed my life.  I had been ready to die.  Fortunately, I had a good doctor who told me to try taking a pain pill.  I did and it worked.

I realized better what a toll the constant pain had taken on me and my life, after finding relief in medication. 

Taking pain medication doesn’t necessarily mean you are out of pain.  I think many people simply want to reach a tolerable level of pain they can live with.  Most people I know who live with pain want very much to function as much as possible.

I have pain-free days, but most of the time I have some level of pain.  My muscles are usually tender.  My body usually feels bruised. 

I have flares, but I’m truly grateful that I don’t have to live every moment of my life in severe unrelenting pain.  I’m also grateful to have a doctor who understands very well that fibromyalgia hurts.

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Post edited and updated on the eleventh of April, 2013

Fibromyalgia misunderstood.

my magic bike

“He said you are very sweet,” the physical therapist said during my assessment.  I missed some of her words, due to a language barrier, but I heard the last part of the sentence when she said, “but he said you have not shown much improvement.”

I felt insulted.  Waves of emotions swelled up inside of me.  I’m sure she did not intend to insult me but I felt it anyway.  I had improved! Wasn’t that in my records I wondered.

I’ve had treatment for fibromyalgia pain there twice.  The first time I went to the warm therapy pool for a couple of months and they are right, I did not “improve,” at least not in the way my insurance company wanted me too, which I guess meant that I was cured.  I did have a great couple of months but insurance companies do not count this as improvement.

The second time I went there for fibromyalgia pain was about six months ago. My therapist and I decided together to do dry-land therapy instead of aqua-therapy, even if it meant me tolerating a bit more pain for a while.

I began to see a pretty big difference in my level of pain around the fourth week of doing the exercises.  My therapist is great, especially because he is well read and current in his knowledge of fibromyalgia.  He does not believe in causing pain.  I like that.

As my pain level went down my mood went up.  I really liked that!  Suffering from depression all the time is depressing.  I began to feel hopeful, feeling like I had some control, like there was something I could do to make things better.

Deciding I was ready to do my exercises at home my therapist gave me pictures and the long rubber bands to take with me.  I did well for several weeks.  I did my exercises, got in time on my magic bicycle and of course walking my dogs.  I could see muscles forming on my somewhat stringy arms and legs.  I was getting stronger.

Then I had a setback in life.  A really hard setback.  One that caused me so much grief I stopped doing my exercises.  It didn’t take long before my pain level was rising and my muscles were disappearing on me once again.

But what about the months I did so much better I was thinking while I was in the physical therapy assessment the other day.  What about the fact that for a while, I did improve, which means that I can improve?

After talking with her a couple more minutes I realized she didn’t know why I was there, which was because I hurt my arm and shoulder when I fell off my magic bike on Halloween.  She thought I was there because of fibromyalgia, again.

I explained this to her but she asked me three times if the pain was from the bike fall and not fibromyalgia.  I wondered about that.  I thought me telling her one time, along with the fact that she had a referral from my family doctor as to why I was there ought to be enough.  Did she think I was making up the accident? I pulled up my sleeve so she could see the gash in my elbow, which apparently convinced her.

The other therapist had never sent me out of there in pain.  This woman did and I hurt for two straight days.  I felt like she did not believe I was in the amount of pain I was in.

Presently, I can only lift my arm halfway up from my side.  Doc says this is from the, “tendon adventure,” I went on.

Many things she asked me to do hurt.  My family doctor had examined me and discovered gently without causing me pain which tendon and ligament he believed to be the ones that went on the “adventure.”  Each time I said, “that hurts,” he stopped.  But the PT I saw would just look at me when I said that hurts as if she did not understand.

It was a frustrating experience.  I was upset when I got there because of the crazy guy I had a crazy relationship with.  She blamed my nervousness on fibromyalgia but I knew what was wrong with me.  It might make the fibromyalgia worse, in fact I’m sure being upset does, but it wasn’t fibromyalgia that had me so upset.

“You are nervous.  You can’t relax,” she kept saying as she held my arm in positions that were really hurting me.  Well, no shit!

Finally she said she would end the session with the machine that sends electrical stimulation to the nerves.  I’d had it on my neck and back before and never had been impressed but also never felt any pain so why not I thought.

That thing felt like knives stabbing in me!  I was surprised and so was she.  She also laughed just a little when my legs came up against my chest after she had turned it up a notch.  I however did not laugh!

I became more distressed.

I told her I wanted to have aqua-therapy again.  I knew my therapist would be in the pool.  I also asked her if she would consult with him.  I’d already decided I was not going to come back and have another session like that one.  She was nice and when she came back from talking to him she had papers for me to sign.  He had agreed with me on the no pain part and that the warm water exercises would be a better approach since I am in so much pain.

Thank God for the few good doctors.  Thank God for the few good medical professionals who study and keep up enough to know they cannot assume they fully understand fibromyalgia.  It is the doctors and other providers who realize this who are the best ones.

Medical professionals who think they understand and have all the answers regarding fibromyalgia, while the smartest scientists are still scratching their heads,  are the ones who I am leery of.

I didn’t like it when that physical therapist, even though she was nice, kept on blaming my upset that day and the pain in my arm on fibromyalgia.

“You have fibromyalgia,” she said, “so you cannot relax.”

I had a boyfriend who was a narcissist I thought to myself and that was why I couldn’t relax that day.   I had spoken to him only hours before!

She was also pulling my injured arms in ways that was causing pain, which was not causing me to feel relaxed.

I’ve had many things blamed on fibromyalgia that shouldn’t have been and had fibromyalgia used to explain other things that are not fibromyalgia.

It’s a crazy world sometimes!