Monday, November 28, 2016

Low Spoon Day

Low Spoon Day.

Get up and feed cats- one-half spoon
Get fed- one spoon.
Digest food- one-half spoon.
Get on day clothes- one-half spoon.
Get online: read email, work on blog, get on facebook- see a bunch of distressing stuff- two spoons... 

Five and one half spoons

Oh dear- I only had 5 spoons in my spoon holder this morning.. and there is still many hours left in today.

November 28th- Stress Sick

Stress Sick

Belly cramping
Mind spinning
Soul clenching
Stress sick

Stomach churning
Gut burning
Heart racing
Stress sick

Head throbbing
Sleep robbing
Fear building
Stress Sick

~(c) Phyllis Griffiths, 2016

When a person has a chronic illness the normal stresses of life double with the problems that the illness will cause. The more severe the health problems, the more stress. The baseline of life stress for a person stricken is much higher than pre-illness. Add a flare up and the stress flares up higher as well. Some may be shut ins: housebound and even bedridden.

Chronic illness can be debilitating creating a situation of poverty where the person cannot bring in an income on top of the added costs of health care to keep the person alive and comfortable. The stresses of poverty can overwhelm.

Family and friends often do not understand the restrictions on the functionality of the ill person, abandoning them when they do not get well, as if they had the choice to be their old selves. More stress.

Holiday seasons add even more stress as the stresses of money, isolation, neglect and abandonment grow more acute. Being an observer of life that a person was once a participant to can be overwhelming. The December holiday cycle is a time of great joy and fun for many and a time of great despondency and despair for many. The stresses can be fatal as bodies succumb to illness and spirits succumb with suicide.

How can people help their loved ones this time of the year? 

The best gifts that can be given cost so very little and mean so much.

* Make time for them. The stricken and their caregivers alike.
* Add them back into to your lives if you have grown apart- a visit, phone call, even an old fashioned real snail mail card in the mail.
* Listen to them, really listen. Give no advice unless asked. Be supportive.
* Take them out to see the sights and hear the sounds of the season. Go out for coffee/tea and pick up the tab.
* Bring them in a holiday meal if they cannot leave their homes. Seasonal treats are often beyond the reach of those who barely can afford daily groceries.
* Offer to help with household chores. The simple things like sweeping a floor may be too much let alone a good house cleaning job. An afternoon of house cleaning may be the most welcome gift imaginable.
* Bring a hamper of groceries.  Money stresses increase this time of year and the grocery budget often evaporates.
* If you bake a gift of from your kitchen is always welcome especially when the effort is taken to take any special restrictions into account.
* Take the time to find out what is needed most and help out in that area if you can.

 What you do not do can be as important as what you do do.

x Do not offer to do anything that you are unwilling to actually put in the efforts to do and do as well as possible. Nothing hurts worse than empty promises. Instead of lessening the stress it adds to it causing more harm than good.

x Do not drop by unannounced. Call first to be sure that the loved one is up to a visit. But when you arrange for a visit be sure that it becomes a priority as nothing hurts worse than an empty promise.

x Do not do anything grudgingly nor say anything to shame or guilt the stricken person, not even in jest. They already feel bad enough about being as they are, being unable to do what they used to be able to do.

x Do not be judgemental. This only adds fuel to the fire, so to speak. No one chooses to suffer, no matter how many memes about suffering being a choice float around the internet. It is a part of the condition of being alive.  The best any person can ever do is reach a point of acceptance with their lives and to find a level of contentment within it. People do the best that they can within the situations that they find themselves. Unless you can live inside their skin you cannot know what it is like so be kind, not judgemental. In their skin you may not be able to do any "better" than they do.

All in All

Be kind. Be loving.
Be helpful.
Give of your time.
Show that you care.

Friday, November 25, 2016

November 25th, 2016

I am weary.

I look awful.
Who is that woman in the glass?
I feel awful.
I hurt inside and out.
Body, mind and spirit
I am always in distress.
I am weary of it all
Weary, oh so weary.

My spirt is so weary.
Weary of worry,
Weary of pain.
Weary of going without,
Weary of the doing without
Weary of scrimping
Weary of the guilt
Weary of the strain
Weary of the unknown
Weary of how the body looks
Weary of how the body doesn't work
Weary of being unable to take care of myself
Weary of the exhaustion
Weary, so very weary.

My mind is so weary.
Weary of brain fog
Weary of confusion
Weary of unknowing
Weary of not comprehending
Weary of struggling
Weary of the exhaustion
Weary, so very weary.

My body is so weary
Weary of the struggle
Weary of falling down
Weary of the body pains
Weary of the disfunction
Weary of being ill
Weary of the sleepless nights
Weary of the weakness
Weary, so very weary.

I am so weary of being trapped.
Trapped in a body so weary
Trapped in pain
Trapped in hopelessness
Trapped inside my home
Trapped inside my room
Trapped until I die
Weary, trapped and so very weary.

I am so weary of my life
Life goes on around me
Life goes on without me
Life is empty and remote
Life happens to other people
Life stopped for me long ago
Life lived but whispers of the past
Weary, life stopped, so very weary.

So Very Weary

~Phyllis Griffiths, 2016

Thursday, November 17, 2016

Poem- To the pain, and no farther.

Another day up and down again.

Another day up
Another day down
Another day a yo-yo.

Get up and moving
Get a sharp pain stab
Get down and stop.

Oh, no,
Please body-
Not Again!

More time down than standing up
More time sitting than moving about
More time with feet up than feet down
More time stuck in one spot.

When the legs won't work the legs don't work
When the knees won't bend the knees don't bend
When the back won't twist the body can't turn
When the feet give out you can't walk about
When the wrists stab and twist
When the hand don't hold
When breathe stealing pains take hold
When the body says "Stop" and "Fold"

The won't power of the body wins.

So it's up for a bit
Until the pain grabs hold
Then back down again
Wait it out
Until it eases
Then up for a bit again

The willpower of the mind
The patience of the spirit
Little by little
Work around, smarter
Work to the pain- no further

Another day up and down again
Another day like so many
Another day doing what I can
To the pain, and no farther.

To the pain, and no farther.

~ (c) Phyllis Griffiths, 2016

2016- A year of many deaths in the M.E./CFS and FMS community.

As a person who was diagnosed with FM in 1986 and ME (unofficially in 1976 as the doctor did not want that on my health record- he had friends stricken in the Royal Free outbreak) officially in 1990, who has been active in peer support and advocacy since '86, I have seen much of nothing happen in the medical world to make the lives of those stricken with these two disorders have any hope of better care let alone something as radical as a cure.

What I have seen are:  lies, deceptions, misappropriations of dedicated research money, bad science and research so badly done that any hypothesis could be proven by those selling their pet theories to the world- and making money off of the misery of millions in the mean time. 

I have had 30 years of making friends in support groups- local, regional, online global- and suffered endless heartbreaks at every obituary notice. Most of the deaths have been directly due to medical ignorance, neglect and malpractice. Complications as a direct result of having a medical diagnosis that is treated as a "trash can" for the "I do not know what you have" and "I can do nothing for you" mindset so prevalent in the medical world today.  Some of the dead were my friends, others were  acquaintances, a few have been total strangers who shared in a journey through hell that I also walk and who were friends and acquaintances of my friends and acquaintances- in my life off by two degrees. 

All of us with ME and FM are no more than three degrees away from the folks in the memorial lists. In a two month period between April 27 and June 27 2016 EIGHT obituary notices hit the ME support and advocacy groups of new deaths. The causes and ages varied, and they came from the UK, Canada, the USA and Australia. 

How can we stop the needless suffering, the early and terrible deaths? It is as if there is an X-files kind of conspiracy of silence on a global scale and the silence is deafening!

I have a M.E. CFS Memorial Wall on pintrest. There are over 400 images in memory of those of us who have died, and it is utterly incomplete.

Anxiety- A Poem by (c) Phyllis Griffiths, 2016

Anxiety -
It is a thief.
It creeps up upon the body -
Stealing rest, stealing sleep -
The edge of panic creeping ever closer -
Body pains become more acute.
You do not know that it is there -
The mind goes onto high alert -
Removing the ability to relax -
Breaking the veil of sleep.
Anxiety, it is a thief.

~ (c) Phyllis Griffiths, 2016

Too Tired- Poem. (c) Phyllis Griffiths, 2016

Too Tired-

Too Tired to think
Too Tired to care
Too Tired to get up
to go anywhere.

Too Tired to cook
Too Tired to eat
I am almost
Too Tired to speak.

Too Tired to shop
Too Tired to plan
Too Tired to try
to get into our van.

Too Tired to bathe
Too Tired to clean
Too Tired to do now
much of anything.

Too tired to sleep
Too tired to rest
Being Too Tired
is really a pest.

Too Tired to read
Too Tired to see
Too Tired to remember
what it is to be me.

~ phyllis griffiths 2016

Sleepless Nights - Poem by (c) Phyllis Griffiths, 2016

Sleepless night awake again, naturally.

Another early morning still awake
Another late night avoiding pain
Another time active mind
Another time of aching body
Another early late avoiding pain awareness combined

Those who understand these words also know the pain
Those who do not there is no words to explain of
Those nights when distraction is needed
Those times controlled by the thief of sleep called pain
Those nights of blessed sleep are quite rare.

Nothing to do but give up on sleep
Nothing to do but try to distract the mind
Nothing to do but seek whatever comfort there may be
Nothing to do but wait until the body drops
Nothing but pain that can't be treated

Always there is the pain
Always there weak or strong
Always there throughout the body
Always there behind the smiles and tears
Always there, until nothing is left

No answers- as the clock ticks onward towards dawn
for another pain caused, pain filled
Sleepless night awake again

~ (c) Phyllis Griffiths, 2016