Archive for the ‘Chronic Fatigue Syndrome’ Category

One pill ~~ One day

lovely image of dandelions and blue sky“dent de lion and blue skies and wishing” 

PHOTO CREDIT: VIRGINIA SANDERSON via Flickr

In the back of my mind was an awareness that my energy was not only temporary, which I’m used to, but was induced by medication.  It was an odd feeling. 

I was temporarily able-bodied.  An inner voice kept reminding me that the clock was ticking.  I didn’t want to remember that I would have to go back to my life of being too tired to visit my family again any time soon.  I tried not to think about where my energy was coming from.  I’ve taken the medication before and always had this same experience.

For the most part, I managed to keep my thoughts positive and be grateful for the time with my mother and one of my sisters.

We had a very nice visit and ate home-cooked hamburgers at a lovely little country restaurant.   I got to see my mother’s beautiful and prolific flower garden.  I’d feared I wouldn’t get to see it at all this year.  Many times I’ve heard her say, “I wish you could see the…,” and she’ll mention whatever is blooming.

I didn’t tell my sister that a little white pill was the fuel I was running on.  I did however, end up telling my mother before I left, which I later regretted. 

I didn’t have to tell her that fatigue was disabling me.  I didn’t have to tell her that I had to take medication for my body and brain to work that day, but I did. 

I had wanted to spare them the details of how hard it is to live with pain and severe fatigue every single day.  Had I failed, I wondered on my way home.

I guess I also wanted to let somebody know the truth.  For some reason, I needed somebody to know that me making the trip was hard.  Plus, my mother is nearly psychic.  If I don’t tell her, it isn’t like she doesn’t know, which she reminds me of from time to time.

“You look so good,” my sister had said shortly after I arrived.  “Your eyes are clear.  You really look good,” she added, with a pleased look about her.

Part of me wanted to tell her that I was running on medication and how underneath what she saw, was a completely exhausted human being, but I didn’t.  I didn’t want to disappoint her.  I love my sister and it warmed my heart knowing she was enjoying the bit of time, when her little sister looked okay. 

I wished in that moment that I could give this to my family more often.  If my looking well made her happy, then I thought it best not to spoil the moment.  I did what my seventh grade teacher once told me to do if someone gave me a compliment.  I said thank you.  Nothing more. 

I’m just too dang tired to do things.  Too tired to think or make decisions.  Too tired to talk some of the time.  Too tired to clean or cook.  Too tired to go anywhere, like the grocery store.

I took the little white pill and had a good day. 

I choose not to take the medication very often because anything that can make this body get up and go, while it feels like I’ve been hit and run over by an eighteen-wheeler, well… I guess it scares me.

Thanks for visiting Dogkisses’s Blog!  Feel free to leave a comment.  Emails are never published. 

Thanks to Flickr member and professional photographer, Virginia Sanderson,  for her absolutely beautiful images!  I’m not a photographer and don’t speak their language, but I especially love the different textures she creates.   I encourage you to check out her photostream.


Related articles

Advertisements

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.

Pain, Fatigue and Dogs

dogs know how to fight fatigue, just look...

Sometimes I think I forget or am in denial of having Chronic Fatigue Syndrome and Fibromyalgia.  I go and go and go and then I crash.  I try to keep a balance, but some days life demands things and I do more than I should.  That’s the way it’s been lately.

I have a pretty bad infected foot, which I thought was fibromyalgia pain, until I pulled my little toe away to look.  I saw what was NOT fibromyalgia.

A month or so ago, I bought a pair of boots.  I wore them around the house, just for fun, and also to take the dogs out in the mornings.  My foot began hurting after several days.  I’ve had foot pain before after wearing a new pair of shoes, which is why I didn’t do any close inspections of my foot, especially beside my little toe.

Well, it sure didn’t look good so off to my doctor I went.  He gave me antibiotics and cream, made a joke about me wearing boots around the house asking if I thought someone was going to come by with a camera and did I want to be ready.  Very funny while my foot was swollen and infected, but I’m used to him.  I like him.  I don’t like that sometimes I think he lets things go, like my foot!

It only got worse.  A round of antibiotics started to help and here’s where I went wrong, I guess.  I missed a few doses.  Now, I have a hole in my foot.  I went back to the doctor.

“Do you think I need some more antibiotics?” I asked him.

“No,” he responded confidently.  I would like to send you to a podiatrist with your permission.”

Well, duh.

So, off I went to the fancy foot doctor who didn’t have any manners at all.  I don’t know where he’s from, but I bet it ain’t North Carolina.

I told him how I had thought it was fibromyalgia for the first several days of pain.  Maybe that’s why he had a dismissive attitude towards me, but then I am so tired of trying to figure out why people who act weird act that way.

He kept saying what I hadn’t done or what I was doing wrong.

He sent me to the x-ray room where they took several images of my foot.  Fortunately, those looked good.

“How long have you not been taking antibiotics?” he asked when I returned.

“Since I finished the ones my doctor gave me,” I told him.

“You do know you have a hole in your foot don’t you?”

I told him that I most certainly did.

“I’ve been to the doctor twice already.  I would have gone to the emergency room if I hadn’t known I was coming here.”

“You’re wearing closed shoes first of all,” he said in a tone that I didn’t like.

It was cold outside.  My family doctor had complimented my shoes.  Why had he not put me on another antibiotic I wondered.

The foot doctor explained how serious the infection is because of where it is and I’m too tired to describe it, but I took heed!  It can go up and into my leg if it gets worse.  He says if I do everything he told me to do then it should be getting well within a week.

So far so good.  Ten days of a very strong antibiotic.

I’d told my family doctor how my son said I was going to lose my foot and later, my leg when he saw it getting worse.  The doctor joked again saying not to let him get near any knives.  From what the foot doctor said, my son wasn’t far off from being right.

The good news is that hopefully, the antibiotics, along with soaking it in vinegar water will heal it.  The soaks hurt like crazy.

I dislike antibiotics very much and this one is kicking me down like a sick dog.

Tiny love hereSpeaking of dogs, mine are once again being very good nurses.

Yesterday, when I finally returned from the hospital, I lied down and put my foot up.  I know they felt how stressed I was.

Our big guy, Tiny, (the cutie with the big head) whom I’m going to write about soon, well, he crawled up beside me on the sofa and lied down on barely enough space for his wide body and put his head on my belly.  That’s what he’s been doing for the past few months whenever I don’t feel good.  He lies there looking at me with his big beautiful hound dog eyes.  Yesterday, just for extras, he gave me a kiss.  He doesn’t give many.  I felt very special indeed.

My pretty little girl curled up at my feet in her soft ball of silky fur.  She is absolutely the softest dog I’ve ever petted in my life.  Absolutely!

Dogs Rule!!!

They were incredibly sweet with both of their heads resting on me and their eyes saying, “OH WE LOVE YOU!”

cooking for mom

I’m also grateful to my son for the many meals he has cooked for me lately. I’ve gained a few pounds, which is a very good thing.

However, he is staying with me and it is driving me a little nuts.  I’ll be glad when he wants to go back to his apartment.

Just the truth.

I’m going to give in to the fatigue for a little while, which means I’ll have to be alone.

I think I’ll finish a good novel I started weeks ago, The Accidental Tourist, by Anne Tyler.

I’m tired.  Too tired to think much.  I’ve been writing, but have nothing ready to click publish.

With that said, I’m offering a few links of interest I found today about pain.

I am here to tell anyone who suffers from pain each day, whose life is circumscribed and whose goals are slipping out of reach, that you are at last being heard. We are in a pain renaissance.”

Read more: “The End of Ouch” –TIME


–“an adaptive mechanism in which severe pain in one area of the body inhibits pain in another is impaired among women with fibromyalgia. Normally, this system works as a check on the amount of pain the brain can handle; if your arm is sore and someone steps hard on your toe, your arm will temporarily feel better as all of your brain’s pain attention is focused on the new insult. In chronic-pain patients, this mechanism is faulty or nonexistent.”

image of sleeping dog via OLX, Tiredness Disorders



we love mom
Thanks for visiting Dogkisses’s blog.


Breathe out…

Sometimes No Sometimes YesShe’s coming and it won’t take her long to get here.  I have about an hour left.  I didn’t have the courage to say no.

She’s my mother and I love her.  She surprised me when she called to say she was packing.  My gut screamed out at me to say no, but I couldn’t.  I tried.  I called her back three times.

“Are you sure you want to come?” I asked her.

“Yes.  Are you sure you want me to come?” she responded.

“Well, I’m sick,” I told her.  “I’m not in the best mood either you know.”

She says she understands and as much as a part of me wants to say no, obviously another part is saying yes.

I have a hard time saying no, which is why I love the icon my friend, Leslie, at IconDoIt, the blog, created for me.  The image was the top rated media image I used in my blog in 2010.

I love the “No” icon and saying no in 2009 saved my life.

I need to print this icon on a very large sheet of paper and hang it above my desk, which sits in the center of my small home.

“If truth be known,” a phrase my mother uses often, I need to be in a hospital or at least I need a good nurse.

I need a break from the many obligations in my life.  I need sleep.  I need an appetite.  I need more time for me.

I keep breathing out, then in and slowly out again, but I’m still anxious.  My home is cluttered.  I haven’t washed my dishes or vacuumed.  I don’t think my mother has ever seen my place in this condition.  I don’t think she’s ever seen me as wore out as I am now.  She may be shocked at my dishes in the sink and I’m not sure if she will see how very tired I really am.

I wish she could understand how I feel but at the same time I don’t want her to know how sick I am.

Breathe out…

2010 was a hard year and even though my spirit has felt lighter this year my body has not.  I’ve been sick.

About six weeks ago I got a terrible case of bronchitis.  It felt like the flu.  I thought it went away, but the fatigue has come back and hit hard.

I keep getting confused and sometimes the room spins.  I keep crying too, but I’m not sure what that’s about.  Out of the blue come upheavals of emotions and tears.

My pain is worse.  I’m sick on my stomach and food is the last thing I want.  I’m angry.  I’m angry that I feel so bad and have for so long.

I finally called my doctor.  I doubt if he can help me and as I write that thought, the tears want to come.  Maybe it’s because I’m so sick and I don’t know if anyone can help me.

I dread going to the doctor.  He’ll check my lungs to see if there are signs of pneumonia, which is what I’ve suspected.  I looked up the symptoms and have every one of them.

I don’t know why I’ve waited this long to ask for help.  I guess because when you have Chronic Fatigue Syndrome, it’s hard to know when you get a new illness or have a bug.  Depression can also keep you from seeking medical help when you need it.

I feel guilty for being sick.  I feel like a disappointment to my mother.  At least, I feel like it hurts her to see me sick and especially if I’m sad.  I don’t want to hurt her.

I also feel very much misunderstood, or rather that my illness(es) are misunderstood.

“If you want to sleep while I’m there,” my mother said the third time I called her back, “then just go lie down.”

I wish I could sleep.  I would.

Most people I know don’t understand that fibromyalgia is a sleep disorder.  They think if you are fatigued that you can lie down, go to sleep and all is good.  They are wrong.

Most people I know also don’t understand the reality of Chronic Fatigue Syndrome any better than they do fibromyalgia.  If only they would read blogs by people who are living with and writing about these insidious illnesses.

If we could sleep and sleep well for more than a few hours then we might feel better.  Maybe.

I’m so tired.  I hope my mother is calm in her mind and spirit.  That’s about the best gift she could give me.   I know she’ll start doing chores when she gets here but this is the thing, it will require my help.

I can barely sit here and write, but I thought I better because I don’t know how long she’ll be here and she gets a little jealous of my computer.  Sometimes our visits are emotionally draining on me.

I said yes because I love my mother.  I know she loves me.  I know too that I won’t always have her here.

I said yes.  I sure hope I did the right thing.

I also hope to meet my weekly challenge for PostAWeek, which for me is on Saturday.

OMG!  How did she make it that fast?  OMG!  She is here!

Breathe out…

dogkisses.

Perspectives on fibromyalgia

Центральная нервная система-Central nervous system

Image via Wikipedia

The first thing that comes to mind when I think about fibromyalgia is that it’s been a long road of pain and fatigue that gradually worsened over time.  I don’t fully understand when I hear that it isn’t a progressive illness or disease, since over the past seven years I’ve gone from saying ouch while bending over in the garden, to having many days (possibly years worth) of being completely debilitated by pain and fatigue.

Is it a disease or a syndrome?  Illness, disease or syndrome?  I think it may be all of those.

Fibromyalgia is a pain filled life changing experience.

Fibromyalgia is often misunderstood, stigmatized and people who suffer from it are wrongly judged.

Sometimes I feel like I understand what I’ve learned about fibromyalgia, particularly that it’s a central nervous system disorder, and other times, when I’m deep in the throws of severe pain or terrible fatigue, I question what I thought I understood.  During these times, I wonder if the doctors have missed a rare disorder or another disease more understood than fibromyalgia is.

Some days I fully accept it and other days I wonder if it even exist, and again, wonder if the doctors have simply missed something that would clearly explain all the pain, the fatigue and the myriad of other symptoms I have.

I’m afraid of fibromyalgia.  Not all the time but some of the time.  I’m afraid of getting older and adding an aging body to an already painful weak one.

I believe we are human.  I do not believe that pain, sickness, illness and diseases are a result of karma, sin or character issues.  I believe humans are susceptible to diseases because we are human.

Disease can be caused by chronic stress but this cause doesn’t make it any less real.

I believe fibromyalgia is a medical entity that causes great suffering and drastically changes lives.

Fibromyalgia is not the same for everyone.

Treatment for fibromyalgia is not the same for everyone.

The view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome, (CSS), makes the most sense to me.

The first time I heard about CSS was when I met with a Rheumatologist, Dr. John B. Winfield at UNC-Hospitals in Chapel Hill, North Carolina.  I had an appointment with him the day before he left his position and moved to the mountains.  I wouldn’t have been able to see him again anyway because UNC-Hospitals would not allow him to see a patient for fibromyalgia more than once.  (Politics…)  I don’t think this helped him help his patients.

As I write, UNC-Hospitals doesn’t have a doctor who specifically treats fibromyalgia.  They have the department of Rheumatology, but they refer fibromyalgia patients to a family physician who often refers the patient to a Rheumatologist.

My visit with Dr. John B. Winfield remains one of the best doctor’s visits I’ve ever had.  I spent over two hours with Dr. Winfield that day.  He told me I would see his research in a few years but at the time that seemed like forever.  Now I see his research.

Finally, I hear doctors, or at least mine, talk about CSS.  Finally.

“Central sensitivity syndromes: a new paradigm…” Yunus MB, (PubMed.gov)

Excerpts from an abstract summary of the article (above link) —

“Such terms as “medically unexplained symptoms,” “somatization,” “somatization disorder,” and “functional somatic syndromes” in the context of CSS should be abandoned. Given current scientific knowledge, the concept of disease-illness dualism has no rational basis and impedes proper patient-physician communication, resulting in poor patient care.

–“The disease-illness, as well as organic/non-organic dichotomy, should be rejected.”

After having caught up a bit on the latest articles, which I find to be tiring to my brain, I’m somewhat confused.

I understand that  Chronic Fatigue Syndrome is part of fibromyalgia.  I guess you can have one without the other, but I’m not sure.  I was diagnosed with CFS before fibromyalgia.

I had Lyme’s Disease in 2003, which caused my joints to protrude and hurt very badly.  They got better except bending over never did stop hurting.

I had Rocky Mountain Spotted Fever in 2005.  I didn’t get treatment for six or seven weeks. My wrists joints were protruding again.  I was severely ill. I was finally diagnosed and took Doxycycline.

The fatigue continued.  I began to have severe low back pain.  Neither went away.  I was referred to immunologists.  They said I had Post Infectious Disease Syndrome and wrote on my records that I have CFS as a result of RMSF.  They said the disease stayed in my system so long that it caused a systemic infection that could last, possibly, the rest of my life.

I saw Dr. John B. Winfield the next summer, in June, 2006, who diagnosed me with Classic Fibromyalgia.

He spent a lot of time with me, several hours, educating me about fibromyalgia and talking with me about how to live with the stigma around the diagnosis, particularly as it is considered an invisible illness.

I don’t know where to draw the line, or if there is one, between fibromyalgia and Chronic Fatigue Syndrome.

I have all the symptoms of fibromyalgia and all the symptoms of Chronic Fagtigue Syndrome.

I could benefit from another two hour visit with Dr. Winfield.  He did mention that me doing things like taking trips to the mountains, along with a few other activities I shared with him that I enjoy doing, would be good for fibromyalgia.

Update on August, 27, 2010 —

Please see the comments on this post for several excellent links (from George) for recent new findings/ research about Chronic Fatigue Syndrome.

Thank you George.







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