Posts Tagged ‘living with chronic illness’

In all the fog, I write…

Thunder beings and Brain Fog

The Thunder Beings have roared and a hard rain is falling.  I sure am glad to be home.  I like being home with my dogs during a storm.  I also like knowing that as I write, my family are in safe places.   Shortly, I’ll be snuggling up with my furry family to watch a movie.  I can’t tell you which movie because I forgot the name of it, which brings me to the heart of this blog post.

I basically wanted to say hello to my blogging friends and readers.

I miss my blog.  I especially miss being able to think clearly enough to express myself through writing.

Normally, I can sit down and write ten pages about something and even though it might need editing, I’m able to communicate what is on my mind.  Lately, this is not the case.  I have a lot on my mind, much of which I’d like to write about in this blog, but I am simply too tired.   I’m also in a lot of pain.

I began this post last night and wanted to publish it while the Thunder Beings were here.  I finished it, which amazed me, but I couldn’t keep enough mental energy to tag it or put it in a category.

The Thunder Beings came back tonight just as I sat down in another attempt to write something that makes sense.  Another hard rain fell.

I don’t know who came up with the term, “brain fog,” but the condition is well understood by those of us who have Chronic Fatigue Syndrome and/or fibromyalgia.

Brain fog attempts to describe a medical mental fatigue that robs us of our normal cognitive skills and abilities.  For the past six months I’ve battled this fog consistently.  Normally, the condition isn’t this persistent and instead comes and goes, giving me times when I can still think.

Writing is hard when this is happening and I usually don’t even try.  I forget my words and have to use the dictionary constantly.  I can’t spell words I’ve spelled since elementary school.  My sentences are choppy and things aren’t flowing.

Brain fog can make a person nearly incapable of verbal responses.  It can have an effect on a person’s speech.  Words might get disordered in a sentence or we use a word that sounds like the one we are intending to say.

I know the words I’m looking for when I lose them.  I can describe the meaning, sometimes the sound or the first letter.  Written words I’ve known since I was a child look unfamiliar.

Mostly I’m tired and sleepy, but I can’t stay asleep long enough for my body to restore itself.  I’m half awake and half asleep.  It isn’t a good place to act from.

My body is as tired as my brain is.  Moving around is hard.  Bending over takes tremendous energy.  I can’t keep up with my chores and that stresses me out.

I’ve missed deadlines.  Many of my obligations in life are compromised.  I don’t get to go visit my family.  I’m also getting a bit confused and my short-term memory is shot.

The fatigue alone is completely overwhelming.  Add to that widespread ongoing pain in the nerves, muscles and deep in the bones and it is one mighty difficult condition!

Life goes on though.  It doesn’t stop for me to be sick or it seems, for me to get proper rest, but then maybe I don’t know how to rest.  Maybe I forgot.

Much of the time, I feel stressed.

I have an adult son, whom I love with all my heart.  He has challenges that I haven’t learned how to accept in a way that doesn’t cause me grief and anxiety.  I believe that accepting things the way they are is the best place to start when you want to change something, but honestly, I don’t feel like I’m doing a good job at this with mine or my son’s circumstances.

Being unwell causes me to feel like I’m failing my son, the other members in my family, including my dogs and a community.  I can’t say that I have the latter, but if I did belong to a community, where would I fit in I wonder.

When I have brain fog, I don’t feel like I have anything to offer.  I do love my family and friends, so I guess love is the one thing I still have to give, no matter what.

I worry about what is happening in this country.  The cuts in our system are scary to me on a personal level.

Being a disabled American makes me feel like a misfit.  The taxpayer’s enemy.  I represent to some Americans the reason our country is in such bad shape.  Somebody, “living for free.”  A flaw in an otherwise well-functioning system.

The doctor wonders what is depressing me!

Chronic illness impacts my view of myself and the world.  It’s a view that’s been filtered through pain, mental fog and bewildering fatigue, along with a very long decade of chronic stress.

I have the dogs to keep things real.  Plus, of course, I love them and think they’re the greatest little creatures to have ever lived on the planet!

One of my dogs had to go out a little while ago.  I was lying on the sofa.  He came over and sat there beside me, patiently waiting.

I felt like a million pounds of sand was lying on top of my body and it hurt.  After about eight minutes, which seemed like forever, I got up.

Putting his collar on him, I just happened to look at the sofa where I had tried to rest.  I saw the pain.  I saw the fatigue.

I didn’t want to ever lie on that sofa again.  I hurt when I lie down.  For a moment, the difference between the way I felt standing and the way I had felt lying down was somewhat mentally shocking.

I feel some better when I get up, but it isn’t long before I’m completely exhausted and must lie down again.

My dogs continue to be good for my health.  They keep me from never getting off that sofa.  They need me and I need them.

They took me outside after the rain stopped tonight.  I needed a short little walk and some fresh air.  They always know this.

Thanks for visiting Dogkisses’s blog.

Image via drburtoni’s photostream, Flickr.

Nothing else but time for fibromyalgia

nothing but time for fibromyalgia wellness requires strict lifestyleI’d been debilitated by a muscle spasm for five days before going to my doctor yesterday.  I would have gone to see him sooner but I didn’t have anyone to drive me and I simply couldn’t drive that far.  I’d taken my medication for breakthrough pain and was worried about not having it later in the month. I told him I’d been in so much pain that I couldn’t think without medication to relieve it.

“I don’t know if the spasm is breakthrough pain or a part of fibromyalgia or if it’s unrelated,” I told my doctor.

“Was it a real spasm?” he asked.  Sometimes he asks geeky questions.

“Yes,” I answered confidently.

“It isn’t ideal that you took your breakthrough medicine for a muscle spasm, but at that point, you really didn’t have a choice.”  He wrote something on his notepad.

Now I wished I’d called his office when the spasm started.   He wrote me a prescription for magnesium mixed with a chemical in aspirin.  He said people find relief for migraines with the medication and that it may help muscles spasms.  He said more about magnesium, but I can’t remember!  He also told me to apply wet heat, which I could have done and didn’t.  Again, I should have called his office five days earlier.  He didn’t mention replacing my breakthrough medication.  I don’t like having to ask for extra pain medicine so I didn’t mention it either.

I didn’t have much in me so to speak.  It took strength for me to talk loud enough to be heard, much less communicate any concerns or other issues I was having.  I didn’t tell him my bladder was still hurting but I was tired.  I’d been hurting for days and it wore me out mentally and physically.  Sometimes I feel like giving up.  I feel like there is no hope.  That no matter what, pain will be part of my daily life.

“You know what I told you about the central sensitivity…” he said.  I nodded yes. I can’t remember his exact words.  He spoke to the pain from the view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome (CSS), which I think suggest that the level of pain I’ve experienced from the muscle spasm is part of fibromyalgia, but not necessarily a symptom.

I had a college mentor who told me many times, “If you can’t explain something then you don’t understand it.”  I guess I don’t fully understand CSS.  I understand the general concept, which is enough to know that people with fibromyalgia experience more pain from stimuli, such as a muscle spasm, than do people who do not have fibromyalgia.

I remember my good doctor saying something to the effect of the spasm having caused a blast of pain from my brain that I felt all over my body.  He said that would explain why I was feeling so crappy.  I’d definitely had a blast of pain!

“Do you have any patients who have severe fibromyalgia, who you are absolutely sure they have it, without a doubt, who gets well?” I asked him.

His answer, which was basically yes, was somewhat surprising to me.   I may have also felt a glimmer of hope, but it would have taken a lot to get me out of the despondent state of mind I’ve been in for the past week or more.   Too bad because he’s a good doctor with a sense of humor.   If I’m quiet then so is he.  If I’m in a lighter mood then he’ll tell me a joke, usually a geeky one, but sometimes that’s what makes it funny.

“Yes,” and he turned around in his chair to face me.  “There are some people who do get better.  They are people who follow a strict routine of exercise.  They practice stretches throughout the day every day.   They follow a strict diet.  They have very strict schedules and that is all they do.  These are people who have nothing else going on and devote all their time to practicing these things.  The people who are more likely to get well from fibromyalgia are people who have nothing else,” and he waved his hands in the air for an added effect, “nothing else going on — at all — that gets in their way.  They are people with nothing else but time.”

Could I be that person I wondered the rest of the day.  I’ve got the time.  I’ve also got a lot going on. 

This morning I visited a blog with the most beautiful photos of places where people were fly fishing.  I’d like to do that, even if I didn’t catch a fish.  I wish I could go to paradise, where I would have nothing else but time.

Image of clock by Leslie, at IconDoIt, the blog.  Copyrights apply.



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”.

All content in this blog, including images and external links are subject to a Creative Commons Attribution-Non Commercial-Share Alike 3.0 United States License.  See my Terms of Use in my sidebar for more information.

Thank you for visiting my blog.

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.

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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.

Thank you for visiting my blog.