Archive for the ‘health’ Category

9 Apr

In all the fog, I write…

Posted by DOGKISSES in Chronic Fatigue Syndrome, disability, fibromyalgia, health. Tagged: , , , , , , .

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.

Related Articles

25 Mar

Will Return…

Posted by DOGKISSES in blogging, health, life. Tagged: , , , .

Life and Health, one and the same...Life and Fatigue are one and the same lately, along with a large dose of pain.  I take leave, but I shall return when more rested.  Hopefully sooner rather than later.

As always, thanks for visiting Dogkisses’s blog.

Image of clock via IconDoIt, The blog.

4 Mar

Pain, Fatigue and Dogs

Posted by DOGKISSES in Chronic Fatigue Syndrome, companion animals, fibromyalgia, healing, health. Tagged: , , , , .

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.


2 Mar

What I can’t say no to

Posted by DOGKISSES in being human, health, mental and emotional health. Tagged: , , , , , , , .

How do you say no to nicotine addiction with severe anxiety going on?

I guess there are a few things I can’t say no to, but most likely, outside of not being able to say no to air, water and food, tobacco is the one thing I can’t say no to.

I didn’t begin this post with tobacco as my choice of something I can’t say no to.  I was going to tell you about something else, something more fun and exciting, but maybe I’ll go with the flow on what I’ve already written on this page.

Maybe I should tell it like it is how addicted I am to smoking and nicotine and how I feel like I’m going to explode, or rather implode, if I go too long without a cigarette.

I may be in denial because I had to pause to write the word cigarette.  It sounds ugly to me.  I wondered before I wrote the word if I want to tell of this awful habit, this complete failing of myself and my family, especially in my attempts to heal my body.  This one thing that feels like if I hadn’t ever started that my entire life would be different today.

I could have been a great athlete.  I could have gone to New York and studied modern dance.  I could have taken job offers as an aerobics and aquatic fitness instructor.  People offered to pay for my training, but smoking made me feel like going into a career like that would be misleading or false.

My habit got worse during a very bad time in 1996.  It got worse again in 2003 when both my son and I became ill.

One day during the summer of 2003 I was smoking a cigarette and thought of a local man whom everyone downtown knew.  He had schizophrenia because his older brother, “dosed him with large amounts of acid,” when he was fifteen years old.  He died in the mental institution when they committed him and put him on a new medication.  It was a tragic loss to all who knew him.  I didn’t know him as well as some of the men did, but I cried when he died.

I was having tremendous anxiety the day I remembered him.  I felt like smoking an entire pack at once, like he did.  He cleaned windows for local small businesses and the owners paid him in food and cigarettes.  He would wait until he had what looked like over a hundred cigarettes.  Then he would sit down at the coffee-house, put them all in a large pile between his legs, and smoke every last one of them back to back.

I always felt his anxiety when I saw him smoking.  He rocked back and forth and smoked hard and fast.

I saw myself in his memory that day I wanted all those cigarettes.  My son was in serious trouble in life and utter fear was overwhelming me with anxiety.  That summer, before my son finally received medical help, is when I remembered our friend who smoked the pile of cigarettes.  I went in the side room of my little home, opened the window, and smoked while I wrote an ode to him.

“The tobacco plant, Nicotiana, has probably been responsible for more deaths than any other herb. At present, tobacco smoking is causing over 3 million deaths a year worldwide, and if current smoking trends continue the annual mortality will exceed 10 million by around 2030.”  (1)

The Nicotiana plant isn’t what’s so bad.  It’s the addiction to smoking and nicotine that leads so many to the doorway of death.

A beautiful plant meant for healing not harming

Nicotiana tabacum

A beautiful plant meant to heal not harm

Nicotiana rustica

“Nicotiana tabacum, the plant now raised for commercial tobacco production, is probably of South American origin and Nicotiana rustica, the other major species which was carried around the world, came from North America. In 1492, Columbus found Native Americans growing and using tobacco, sometimes for its pleasurable effects but often for treatment of various ills.”  (1)

“As early as 15 October 1492 Columbus noted that dried leaves were carried by a man in a canoe near the island of Ferdinandina because they were esteemed for their healthfulness.  In the same year, two members of his crew observed people in what is now Cuba carrying a burning torch that contained tobacco, the purpose of which (it later emerged) was to disinfect and help ward off disease and fatigue.”  (1)

One time a wasp stung me and my leg swelled and ached badly.  I put a compress of wet tobacco on it and the swelling went down immediately.  I wore a patch for a couple of days and my leg was fine.  My grandmother had taught me that when a bee stung my foot around age seven.  I loved walking barefoot and we had more than what I considered our share of bees.

I grew up in the 1970’s in a rural cotton mill town where everyone smoked, except my grandmother.  She was the only adult in my family that didn’t smoke.

I remember my dad smoking in the line at the grocery store, along with everyone else.  The store manager walked around with a wide broom to clean up the butts on the floor.  He didn’t seem to mind this at all.   He would greet people as he did this.  I didn’t think anything about it.

I smoked my first cigarette in elementary school.  I stole them from my grandpa.  They said he was blind, but he always knew when I reached into the drawer where he always had a carton of Winston’s.  I don’t know how he knew because the drawer was out of his sight in the hallway.  One day when I opened the drawer there was a dozen packs of Juicy Fruit.  He never kept his cigarettes there anymore.

I nearly passed out the first time I inhaled smoke, but that didn’t stop me.  I thought I was cool.  I would go behind the neighbor’s outdoor shed, which was beside the cow pasture and smoke.  I didn’t do it often, thank goodness.

It was when I was around fourteen that I began to practice the habit.  I’d ride my bicycle and hide a pack of Marlboro’s in my socks or if I wore my cow girl boots then it was quite easy.  Nearly all my friends would hide cigarettes in their boots.  The cool ones anyway.

I quit the habit when I was seventeen.  That was the year when I made life-changing good decisions.  I wanted good health and an education and I got both.  I had many accomplishments when I was seventeen.

I started back one day when my son was a young toddler.  I was sitting around the kitchen table at my former sister-in-law’s house.  I hadn’t thought of a cigarette in five years.  I was having a hard time being a single mother.

“Maybe you need one of these.  You need something to calm your nerves,” my dear in law said to me.

She handed me a Marlboro light.  I thought I’d smoke only one.  I was wrong.

I was going to write that I can’t say no to severe sexual desire that has gone past the point of no return, but I wrote a little about that in The Elusive Fence.

Thank you for visiting Dogkisses’s blog.  Please feel free to leave a comment.

(1) PubMed Central, Journal of the Royal Society of Medicine, Medicinal uses of tobacco in history.

(2) Image of sign via Wiki Commons

Click on images of plants for Wikimedia Commons description.

Topic #60 from The Daily Post, “What can’t you say no to?”

19 Jan

Walking out of depression

Posted by DOGKISSES in depression, health, mental and emotional health. Tagged: , , , , , , , .

“You can predict the future by looking at the past,” my first real love used to say.

He used this as a mantra in financially difficult times.  He would declare with confidence and enthusiasm,  “I’ve had money before and I’ll have money again!”

His logic, if there was any, was never clear to me, but when I get too sad for too long I remember what he said.  I figure if I’ve been happy before then I’ll be happy again!

I know myself in pain, fatigue and sickness.  I know myself in sadness, grief, confusion and shock.  I know myself in crises, one after another.  I know myself in defense of my dignity and integrity.

Fortunately, I also know myself in joy, peace and happiness, but if the truth was told, I haven’t been really happy since my son became ill when he was nineteen years old.

Depression had literally disabled me before my son’s illness, but I was managing and getting along.  I had gone back to college hoping to finally finish about the same time my son began having medical problems.  I withdrew for the second time, both times were medical withdrawals due to depression.

I know myself well in depression.  Some days I think it’s no more than the way the sun shines that gets to me.  Some days anyone in my shoes would be depressed.  Then, there are times when I remember something that brings me down.

Recently, the memory of that awful relationship I was in not that long ago crept into my mind.  I didn’t want to feel the memory.  I didn’t want to feel the confusion that comes when I recall what I thought was love, only to remember that he said it was all a game.

The gloom that set in was soon interrupted after a brief phone conversation with a very good friend.  I had called to ask him for a favor.  He was able to help me, which relieved me of an hour-long trip.

It wasn’t his kindness alone that changed my mood, although I was certainly grateful for his help.

After telling me the favor I asked of him was no problem and something he could do quickly, he jokingly started pretending to be a ladies man.  “Hey baby,” he tried to say, but we both laughed at how funny it sounded coming from him.  He’s not the kind of man to call a woman Baby or Darling, or like one of my very southern friends, “Sugar,”  who reserves a special name for the sweetest women, a group he says I fall into and calls me, “Sugar Bugger.”

My good friend who can’t even say, “Hey Baby,” without laughing and is not from the south thinks this is a very funny way to address women.  On occasion, he enjoys playing this type of character.  He knows it makes me laugh, which is why he does it.

He tried again, “Oh, baby.  You’ll owe me.  You’ll pay up –he had to pause trying not to laugh — you’ll pay in kisses!  Chocolate kisses!  I will exploit you to no end making you pay in chocolate kisses.”

We both laughed.  I realized when we hung up the phone how much better I felt.  The dark cloud was gone.

Having my friend joke about such a thing or me merely hearing the word, “exploited,” might have made me very sad or even physically sick six months or a year ago.

The joking around didn’t cause the dark cloud to rain misery down on me and instead brought only laughter.  My friend’s silly imitation of this type of character made me see how lucky I am today not to be in a relationship where what he was joking about would be my reality.  A peaceful feeling set in with me for the rest of the evening.

I feel lucky to have made it back to myself.  What a long trip away it was.

This past summer brought healing to my heart in a new friendship with two sisters, both young and full of enthusiasm for the simple things in life.  I laughed more that summer than I have in ten summers put together.  My son laughed too and for the first time in years I started to see his smile when I snapped pictures of him.

One night we laughed so much and lost track of time.  After midnight I realized the girls should have already gone home.  They were grounded for a week.  Secretly, I felt like a child.  Not that I wanted them in trouble, but we all knew our time was innocent and laughter had gotten the better of us.  Not so much a crime in the summertime.

The girls’ family is of a particular religion that has many rules, a few of which I unknowingly broke, like when I gave them both a birthday celebration.  One of the parents was pretty upset and things changed after that.   Nevertheless, our times together, especially when we all laughed so hard for hours that we would completely wear ourselves out, remains in my mind as a time of healing.

The first day I met the girls I was walking the dogs.  I wasn’t long out of the bad relationship and I had two serious cuts on my fingers from an accident in the kitchen.  They asked me how I was doing and I broke down in tears right there on the side of our road.  I had to bend down and rest on my knee.  I was completely taken by sadness.  I cried while I told them all about my life, how hard it was and that’s when they asked if they could hold the dogs for me.

Most days after that they were here.  Most days they walked my dogs for me.  I cried a lot for the first month or so, but the laughter began healing my heart.  Then when I took pictures and saw the familiar smile on my son’s face that I hadn’t seen in years, I felt that if there is such a thing as angels, those girls surely must be ones.

Not having the best luck in the world, my summer ended with a new neighbor who turned out to be a nightmare.  The situation eventually thoroughly depressed me and the neighbor was soon after evicted for harassment.  The girls weren’t visiting as often anymore.

I felt like I had taken ten steps back.  I had to go through some of the same emotions I had felt that past winter.

The girls went back to school.  My son went back into the hospital.  I realized I was burned out.

Then, just to top things off, a stressful family event happened that caused me more turmoil.  I felt like too much had gone wrong.  I became seriously clinically depressed.

I feel like I’m walking out of depression, but it sure is hard.

In many ways over the past two years, life has called me to question who I am, what I want in my life and just as importantly, what I don’t want anymore, hence my love of the NO icon.

What I don’t want is pretty simple.  I don’t want to be treated poorly and I don’t want to endorse cruelty by standing in the line of fire.

What I want is pretty simple too.  I want to know myself outside of depression.

My mother recently gave me a few letters my uncle found that I wrote to my paternal grandmother in 1990.  I couldn’t believe how happy I sounded in the letters.  I was a little depressed back then but nothing, nothing like I’ve experienced since.

One of the letters reads very much like those happy Christmas letters people write.  Other people.  Not me.

I tried to remember how I felt writing the letters.  I couldn’t remember exactly how I felt, but I know I wrote them.

My son’s letter is the best.

a happy child's letter to his great grandmother

His childhood notes, creative school work and art definitely speaks to a happy kid.  I like that.  I take some credit for the good times he had growing up, which is a piece of happiness.

Returned also to me was a card I had sent my grandmother when I went to Texas to visit a friend.  I think this was the time my friend and I rode across the horse pastures, she on her Arabian and I on a Quarter horse under the light of a full moon and in Texas, that’s a really big moon!

card to grandma, boy I sounded happy

“Just having fun,” takes you a long way walking out of depression.

Thank you for visiting my blog,

dogkisses.

PS  If you haven’t laughed in a while, here’s a video that sure made me laugh.

“Laughing Girl”

7 Jan

Breathe out…

Posted by DOGKISSES in Chronic Fatigue Syndrome, family, fibromyalgia, health, human relationships. Tagged: , , , , , , , .

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.

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27 Dec

Holding Hope

Posted by DOGKISSES in being human, grief, health, hope. Tagged: , , , , , .

We find it, lose it, and yet keep finding it... that elusive source of survival

Hope is a wonderful feeling.  It’s also hard to hold.  I guess some people have it most of the time, which must be a very nice experience.

I wonder if the people who have hope most or even all of the time are consciously aware of it?   Maybe it’s an ongoing feeling that is so normal they don’t think about it.

I get bursts of hope –sometimes in large doses and other times small ones, but it comes and it goes.

It’s like being on a merry-go-round.   Sometimes I jump off where there isn’t any hope and instead a great void of darkness.  It is from this desperately sorrowful place that I search for hope, because that’s the only thing strong enough to pull me out.  The trick is me being able to see it, grab it and hold on to it long enough to stand on the ground again.

Round and round I go.  Lose it, find it, lose it and find it again.

My losing hope feels like a normal human response to chronic repeated difficult situations filled with fear and grief.   It comes from not knowing what to do or being too tired to do what I think might help me find some peace.

Hope instills peace and joy.  If I could hold hope long enough, I’d have a better chance at feeling joy.  I might even feel happy again, like I did a long time ago.

Hope must be something you have to nurture.  It must be akin to yeast if you want bread to rise.  It might be the same to the spirit and mind as water is to the physical body.   Maybe we can’t survive without it.

Hope is hard to hold.  I keep losing it, but then again, I keep finding it.


Thank you for visiting my blog.

 

17 Dec

One mom, one son, one day

Posted by DOGKISSES in family, health, life, mental health, mental illness. Tagged: , , , , , , .

Sea Otter Mother with Pup Beside Morro Bay CA ...

Image by mikebaird via Flickr

“Write out your boundaries while your son is here,” the hospital nurse suggested to me over the phone.  “Write it out –what you are and are not willing to do.”

I remembered the conversation I had with this nurse less than two months ago when he suggested that I hand over some of the care giving responsibilities I’ve taken on.

He didn’t say to whom I should hand any of them over to and so far nobody has volunteered nor do I know of anyone who can relieve me, so there.

I have boundaries.  I told him my son doesn’t care about his life and with genuine sincerity he said he completely agreed.

How is a mother supposed to handle this… knowledge?  Just this one part of a longstanding stressful and heart breaking situation is as hard as anything I’ve ever felt.  To think that it is the truth deeply disturbs me.  To think that my son doesn’t care about his life puts me into a hypnotic state of grief.

Everything I’ve ever learned or believed or know is not applicable to the way I feel.

Boundaries mean nothing.  Lists mean nothing.  Text book ideas and ideals mean nothing.

The only thing that matters to me now is my son and his life.

Statistics, treatment models, my son’s history, “the highest level of mental health care available,” which my son has in an ACT team and as the nurse added during our conversation today, “people are waiting three to six months to get services from an ACT team,” –none of this is applicable to the way I feel right now.

I’m unhappy with what many people are seeking and waiting for.

Part of the problem is that my being dissatisfied with the services the ACT team is in reality providing for my son rocks a boat that is barely staying afloat.

“The ACT teams are overloaded with too many people and not enough resources,” the nurse said right after he told me about how many people wants and needs this service.  I’m well aware of the state of affairs within the mental health system.  They are not good at all.  “They don’t have the resources to see all of their clients, (a.k.a. consumers).  Some of the people just don’t get seen.”

My son is one of those clients.

“Your son is difficult,” he said.  I’ve heard this several times.

His teachers said he was difficult throughout his school years because he talked too much.  The creative and interested teachers loved him.  The ones who found ways to make school work for him, which was hands-on-learning, discovered that my son was not only bright, but also quite capable of being a, “good student.”

“The ACT team is difficult!” I said with strong conviction.

I like the nurse.  He has taken very good care of my son many times now.   I respect him and now, I think I need to be taken as seriously as anyone else involved in my son’s health care.

“I need you to hear me,” I told him.  “You guys have to listen to me this time.  Hear what I am telling you.  The ACT team is not providing these services to my son.  They have many good and very valid reasons, but I cannot accept them as an excuse not to see him.”

He said he would definitely pass on my concerns to the doctors and I know he will.  I know they will call me just like they always do.  They really are good doctors, but something happens in route from our conversations about resources and ideas as to what might help my son live independently in a community –to the day my son is discharged.

Somehow what is said doesn’t make it to a written document and he comes out of the hospital with the same treatment plan that he went in with.

The nurse has told me before how much he likes my son.  “I find him fascinating when he can communicate,” he told me not long ago.  Today he said my son is cognitively slower than he has seen him before.  I realize that, which is why he’s in the hospital again.  I’m very worried about my son.

The nurse also reminded me that he thinks my son is a really good guy.  Everyone who knows my son says this about him.  Most people say he’s sweet.  That’s the word I hear most when people talk about him.  People have said that about him since he was a little boy.

He has this kindness, this sort of giving unconditional loving way about him, but when he is sick, well…  I’m lost for words.

My son is lost.  He is truly lost in this world and I guess, so am I.

They say he has schizophrenia and he does have the symptoms, but he’s never fit any mold within the diagnosis, even as precarious as that is.

I’ve always felt in my heart that the doctors should focus on addiction issues, at least once.  I know you can’t force recovery from a substance addiction on any person and when that substance is causing symptoms of schizophrenia… well, I’m lost for words again.

Addiction joined with schizophrenia, or more accurately, the symptoms of schizophrenia, — is very hard to treat.  “The addiction your son has and schizophrenia are each possibly the two worst diseases a person can have,” one medical doctor told me a few years ago when my son was struggling with substance abuse.  “Your son faces both of these,” he added.

I wish the hospital would take the approach that some of my son’s school teachers took and give him a new chance.  I wish they would just one time forget his past failures and look at the successes he’s had and say hey, you know, we think your life is worth a great deal.  We want to help save it.

I wish just one time that they could for a little while stop thinking of how things don’t work, stop thinking inside the box, stop telling me things I learned when I was five years old and give a good college try towards developing a new plan.

I know this would take some time, but it’s a hospital.  A teaching hospital.  A teaching hospital with renowned doctors and bright residents who are still young enough to be idealistic,  so why not teach them how to approach the most challenging patients?  Why not teach them that they might can make a real difference in one family’s life with a little extra time thinking, communicating and reaching out to find resources in the community?

“He’s older now,” the nurse also added.  I’m tired of hearing that too.  It’s clear to me that younger patients get a bit more attention and time, I guess, because the doctors are more hopeful that they can do something.  (Studies suggest that early intervention in schizophrenia leads to a better prognosis).

His age isn’t applicable to how I feel right now.  His life is.

What am I willing, or not willing to do?

It’s possible that I’m willing to die trying to save my son.

Today the nurse said he would worry for me.  That was a blessing.

Thank you for visiting my blog.

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