Posts Tagged ‘living with fibromyalgia’

Time out…

Mystical Mountains

Sacred Oats fall Crows came to call

A magical view of those rolling green hills

those hills sure do call my name

My beloved 4-legged guardian and I walk barefoot

green grassy meadows where the ground is soft, white-tail deer roam and crows come calling

Where the Sacred Oats fall…  Crows come to call

Suddenly we danced in the night around the fire

We danced at night.

Below are some of my journal entries during my camping trip.  They speak mostly to pain and challenges.  I’m a little surprised.  I did actually enjoy myself, at times, but apparently there was more pain and hard times than I realized.  I do love those hills.  I loved some parts of the trip.  Still, these entries mostly reflect how hard the trip was for me.

–Today we are in the mountains.  Many things occurred over the past few days as I was getting ready to go camping that I didn’t like.  But I’m here.  A moment alone now as my son, a man now, and our two young friends are with me.  Of course our four-legged are here too.  Well, my moment is over.  Son is back.

–Preparing for this trip was extremely hard.  Bending over a lot while packing caused severe lower back pain for me.  I had to walk through the fatigue.  I had to dig deep inside for the will or whatever it was that I had to have, determination I guess, to keep on packing despite severe pain and fatigue.

–I fell.  Slid down a moss covered set of stone steps.  No bruises.

–Sacred oats gone bad.  I am not eating from that bowl.

–I’ve been terribly sick and pretty much having to go at things as usual without much help.  It’s been hard.  I had to do most of the work preparing this trip.  My son isn’t doing well.

–I’m exhausted.  Completely.  My pain levels are off the scale.

–It’s nice writing out here.  My dogs are lying next to me.  The young people went on bicycle rides.  It’s very quiet.

–I love being here.

–Butterflies are everywhere.

–I think the sacred oats that went bad have left us now.  I hope.

–They’re back.

–Well, maybe those bad oats didn’t leave us.

–My pain has hit hard sitting here writing.  I’ll lie down soon.

–God I’m tired!

–My son is having a psychotic episode.

–My intestines hurt like hell.

–I’m watching the last log burn.  Now this wood, well, it’s amazing!

With all the pain and frustration that came with that trip, I managed to get some time out.  I needed to get away from flat land.  I needed to go where the hills surround me.  I needed the cool breeze that always travels through those rolling green mountains.

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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Related posts from Dogkisses’s blog:

Without the label of fibromyalgia

Fibromyalgia Misunderstood

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?

Fibromyalgia HURTS!

“How often do you wake up in pain,” my good nurse asked.

“Pretty much every day lately,” I told her.

Her question was the first thing that came to my mind today as I was waking up. 

I lied there for the first few minutes,  as my brain processed how much pain I was feeling.  I thought about my medication and how it was only steps away.

Having overslept, I was an hour late with my dose and when I woke up, there it was!  Severe Pain all over my body. 

It’s hard to know how much pain to accept, tolerate or live with, when you live in a certain amount of pain all the time.  It’s also hard to recognize when pain has worsened until it eases up and I think wow — I was hurting a lot!

I decided about three years ago to take medication for widespread ongoing pain.  

“Pain and Living,” is one of my posts in this blog, which was written about the time when I decided that enough was enough.  I could only tolerate so much pain.  I had met my limit.

I wanted a chance at living my life.  I began to notice a difference in the quality of my life right away after going on medication for pain.

I was doing well with the medication.  This means the level of pain I was experiencing was much lower and at times, managed well enough that I could do things I hadn’t been able to do in a long time.

Things were going pretty good and then came life.  Regular ordinary life.

For me, regular ordinary life includes intermittent crises.

Stress triggers fibromyalgia and fibromyalgia is stressful.

My most recent stress is that I took a hard fall from my magic bike.  

Within a ten-day span, I went from having a very sore elbow, shoulder and back, to waking up with severe back pain and finally feeling pain in every place in my body that has tissue.

Fibromyalgia covers a lot of ground.

Yesterday I was able to do some house chores.  Some days I wake up and realize I’m able.  I know I’m supposed to pace myself, but when I get these able days I try to catch up on things, especially dishes and bathroom chores.

Laundry is the hardest because of lifting clothes, out of the washer – into the dryer – out of the dryer – then folding them.  Standing in one spot is hard too, which makes cooking and doing dishes a painful and/or fatiguing experience.

My sweet dog, a great insect hunter, barely brushed against my femur bone when I lied down after my chores and it felt like I was kicked in an already bruised spot.  Fibromyalgia pain sometimes feels like my whole body is bruised.

My insect hunter, along with our other 4-legged relative, have been lying as close to my body as they can get over the past two weeks since I fell.  They’ve literally had me locked down on the sofa a couple of times.  The big one lying across my feet and the little one, only 45 pounds, likes to get anywhere she can and if that means on top of a leg or an arm, then that is where she gets.

Last night, after my day of chores, I woke up about 9pm on the sofa.  Both dogs around me.  My body was hurting all over.  Moving was a struggle.  I budged one of the dogs and she didn’t move.  They were sleeping good.

I had overdone it with the laundry for sure!  I’m not very good at giving in to rest.  I truly needed to have that as my top priority.

By the end of today I cried some.  I had walked the dogs.  Not as far as they needed to be walked, but it was nice and we got a little sunshine.  I let them smell where their little noses wanted to go.  Lots of people just walk their dogs, but I let mine stop and smell.  I once read where it’s good for a dog’s olfactory system to smell things every day.  That made sense to me and I like things that make sense.

Dogs have what the native Americans call good medicine.  Their medicine is loyalty.  They give.  This is what they do.  They give.  They are wonderful nurses!

Pain is stressful.  It is tiring.  Living with it all the time is depressing.  It just is.

“How often do you wake up in pain?”  My nurse’s question lingers in my mind.

How often is too often?

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My magic bell and fibromyalgia

with fibromyalgia injuries take longer to heal

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.