Archive for the ‘Chronic Fatigue Syndrome’ Category

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.

 

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.



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.