Friday, February 17, 2017

PAINSOMNIA SUCKS- Pretzel Nights

 

  Last night was another Battle Royal with pain. Pain so heavy, pain so strong, pain so unpredictable that there was no way to be "comfortable" - I use this term quite loosely- for long enough to sleep. When sleep does come it does not last long. Sleep for an hour- awake for a couple of hours- back to sleep for a few- awake again-

I call nights like that Pretzel Nights.

A Pretzel Night is one where the periods of sleep have several big holes in them. Doze off for a bit. Awaken in agony. Do something to distract yourself until such time comes as the pain stuff kicks in or the attack eases up. Doze off again. Awaken in agony. Repeat until you are finally able to get enough sleep to get up and start the day.


 Since I am in an autoimmune flare-up life is difficult and solid deep sleep elusive.  Waking up soggy from night sweats is such a problem that I have a stack of T-shirts and PJ bottoms to change into as needed.  Some nights I change three or more times. Other nights- a really good night- I don't get so soggy that I need to change.  Waking up soggy just adds another layer of misery. You don't want to have to change your bedding at 3am because it's soggy. Changing your bed clothes is hard enough.


Add to that waking up dizzy, confused and nauseous. It's not a pleasant image is it? Imagine waking up that way several times a night. Don't forget the pain.


It's the pain that wakes you up into the hell of confusion, vertigo, nausea and sogginess.


The body is wracked with pain. To call it anything less than agony would be to sugar coat it. Some parts hurt more than others. You may awaken gasping for breathe. You may think that you are having a seizure of some kind. You may think that you are dying. But all that is happening is that you are just waking up.

You have to hang onto the bed and wait, focus of breathing through it all and relaxing the body until the terrible spasms of awakening pass and you can move.  You have to move your body slowly. If you move too fast a muscle cramp may result. Anyone who gets cramps in their calf muscles or foot arch knows the agony. It can hit any part of the body that is muscle and leaves you feeling bruised.




This can happen several times a night.


ALL you can do is to survive it.  Survive in the moment. Survive for today. Hope that the flare will be a short one and that the nights won't get any worse than this. Breathe through it and ride it out. 



Is there anything that can be done for it?

Nope, not really.

Women in Peri-menopause and Menopause already taking HRT/ERT may find that the night sweats part lessened in intensity and frequency.  

Meds can cause as many problems as they help with. Everything has side effects. Ease one problem and worsen another.  Cause something else to happen- as if we need another issue to deal with. The remedy can be worse than the problem.

There is no good formula for relief. That does not mean that we should not try to find ways to ease as many of the issues that feed into the Painsomnia Pretzel as possible, making the sleepless holes as small as possible and the good sleep as big and good as it can get.


We may have to learn to live with nights like these, to cope as best we can.

BUT we never have to give up on the ideal of those rare and precious nights of good sleep.








Friday, January 13, 2017

The Old Cat Died- Sir TigerTail of Bast - March 1996- January 2017






                                                            Ode to the Old Cat

                                                  Do not have the gall to say to me
                                                     That he was just a cat.
                                                 To me he was my Main Meow
                                                     And so more than that.

                                                 He was my friend for many years
                                                    Close to 21 at that.
                                                From tiny kit to aged tom
                                                    Sometimes angel, sometimes brat.

                                                  When I was sad, he dried my tears
                                                     His purrs strengthening my heart.
                                                 When I was sick he'd stay by me
                                                      He refused to be apart.

                                                 He was poppa to the fostered kits
                                                   And he raised them very well.
                                                He loved them all and they loved him
                                                   As their grief for him does tell.



                                               He loved us strong up to the end
                                                 Knowing his time was near.
                                               With a last cuddle, caress and purr
                                                   He told us he loved us dear.

                                               His love is branded on my heart
                                                   My very soul and mind.
                                              My Main Meow has gone away
                                                  But his love he's left behind.

                                              Sir TigerTail of Bast was here
                                                 He shared this life of mine.
                                             Sir Tiger Tail of Bast is gone.
                                                  His love ever stays behind.

                                                 © phyllis griffiths 2017




Sunday, January 1, 2017

Cultivating Contentment in 2017







~ Good-bye 2016- Welcome 2017~

Whew- that was one difficult year, 2016 was.

In the immortal words of Edgar Rice Burroughs character John Carter of Mars:


"I STILL LIVE!"
The year 2016 ends in that defiant roar- I Still Live!
I am still here. I still live. 

It is a starting place as well as the giving a proper salute to the "Fickle Finger of Fate"


 "I Still Live!"

So what to do about 2017?

This is what I would like to have as my goals for the next twelve months: 



After the last twelve months these goals should be easy enough for even me to accomplish.

Simple, easy goals for the most part.
Difficult to manage goals in some ways.
Simple pleasures.
It's a matter, in the end, of giving one's self permission to do what brings you pleasures in spite of being in a state of perpetual, chronic pain and illness. 

There are people who feel that if a person who "claims" to have a debilitating chronic condition that if they achieve a "good life" that they must be faking it.  Either their physical issues or the claim to not being in perpetual deep emotional suffering. A person can't have both situations in their lives. Unfortunatelysomehow those folks show up as professionals in the medical, insurance and social welfare world where we can't avoid them. 

But those people are WRONG!   

We may be stuck living in these damaged bodies so we might as well get what we can out of the lives that we have.
It isn't easy and it doesn't happen all of the time but we can have periods where we can be content, even happy.

As Ringo Starr sang "It Don't Come Easy, You Know It Don't Come Easy". But it is so worth it in the end.

~ The goal for 2017- To Cultivate Contentment.~

More Sleep-  as Garfield said "A nap is always in order." Cultivate naps to retain energy and ease body pain. Quality sleep is often difficult for us to achieve so napping can be a good tool if we only allow ourselves the use of it.

More Music- Cultivate music making as well as listening. Not all music is man-made. The birds, the surf, and the wind- all of nature- produces music. We but have to notice, listen and appreciate. Music is good to reduce stress and stimulate the brain.

More Tea- Cultivate a palate for teas and tisanes, enjoy experimentation with the tastes of teas of all kinds. Tea Time- a break with a goal and little ritual. We need to keep our fluid levels up as our bodies and teas are one way to do so. 

More Books- Reading is a wonderful gift that we give ourselves. Writing is a gift to ourselves and to our readers. We can leave behind our cares and woes and enter into other worlds. We can dream through books. We can learn new things. Books are a good tool to stimulate the mind as well as easy anxiety. Cultivate your love of books.

More Sunsets-  Take the time to appreciate the splendor of the setting sun. Every cell phone has a camera these days, so why not take photos of the sunsets. Cultivate the appreciation of the beauty of the end of the day's sunlight.

More Creating- Cultivate creating. This may seem a daunting thing at first glance, but give it more than just a glance. Creating is within you wanting- needing- to get out. Simple things, even a doodle, is an act of creating. Get some crayons or coloured pens and a colouring book that appeals to you and get lost in the moment. Bake cookies, plan and/or plant a garden, write a blog, take photographs, play a musical instrument, make stuffed toys, knit a scarf, or fold a thousand paper cranes.  The spirit soars when we create. Our bodies produce endorphins, stress is reduced, pleasure results.

More Long Walks- Leisurely walks is the goal here. If you can manage walking it is good for the body. Out in nature or indoors around the mall. If you can't walk then ride. Ride a bike, ride a mobility scooter, ride your motorcycle or motor scooter. Ride in your wheelchair. Cultivate getting out of the house and seeing what there is to see. Take photographs, listen to the word- combine with Music, Sunsets and Creating and other positive activities.

More Laughter- Cultivate laughter. Laughter is good for the body, mind and spirit. A good laugh gives your innards a massage. Even spending a few minutes a day faking laughter produces good effects in the body. 

More Hugs- Cultivate hugs. Soft hugs, snuggle hugs, quick hugs, bear hugs, pillow hugs, pet hugs. People need hugs. Good things happen with hugs. Even sharing hugs online is helpful to those giving and getting the hugs. 

More Dreaming- Cultivate positive, pleasurable dreaming. Day dreams. Let your imagination take you away. Nap time is a good time for dreaming. Reading can be part of the dreaming, as can creating and music. Dream about what you would enjoy doing if you could. 

More Road Trips- Cultivate adventure. For shut ins going out for the day qualifies as a road trip. Plan for those days out. Go out to a park, a museum, spend a day going to yard/garage sales. Do a day trip to someplace new.  Go do an overnight at a spa or resort. Go to a festival. Take a vacation away from home.

More Fun- Find your fun and cultivate it. It need not be anything more than the other goals in the list- but do them all for the pure and simple pleasure of it.

More Love- Cultivate love. Love comes in many forms. Seek them out. Love makes the heart sing and the spirit soar. Loves brings a light, a warmth. Love is peace and contentment. Love is fun and joy. Cultivate simple random acts of kindness- acts of love. Put love into the things that you create. Don't forget to allow yourself to receive love- love in it's many and varied kinds. 



These simple goals are my plan, my road map for 2017. 

You are invited to join me in this journey. In this quest.
To Cultivate Contentment.


Sunday, December 18, 2016

"Faking It" Through December

December 18th

Past the halfway mark of the month.
Days  now before Yule.
A week until the Christmas Day.
Two weeks until New Year's comes.
Such a fun time of the year!

But when you live in chronic pain,
In debility and woe
Forever outside looking in
Sitting by yourself, alone
One question the soul does send-
Whenever will December end?

"Fake It Until You Make It"
Pretend beyond the "Try".
"Fake It Until You Make It"
When "It" is but a lie.
"Fake It" that you are happy
does not "Make It" so.
"Fake It" that you are OK
just push the "it" down low.
"Fake It"- do the holiday things
when you know you shouldn't go.
"Fake It" does a "Failure" make
when you can't "Make It" So!

But we keep on trying
Pushing until we cry
Frustrated from the lying
Faking it when we try
When there is no way that we can.

'Fake it" that no memories come
Heart breaking that they may be
"Fake it" that we are having fun
When it is hard enough to be.
"Fake It" that we're not in pain
That sickness that we feel
"Fake It" that it's a Joyous Time
When to us it's far from real.

We count the days until it's done
Until it's past and gone.

But for the here and now-

Again we sit here all alone
No place is safe to hide
The world is what it is today
No hope now can we find.

But still we go to do my best
To "Fake It" we still try
To make the best of things we can
Our hurts we try to hide
"Fake it"- wear that social mask
"Fake it"- makes the fraud
"Fake it"- is a public face
To makes outsiders proud.

'Fake It" for the family
"Fake It" for the friends
"Fake It" for the public face
"Fake It" all around.

"Fake It 'Til You Make It"
Does Not Make It So
"Fake It "Til You Make It"
Can be the path to woe.

Soon we won't need to try it
January is on it's way
December will be in the past
We won't need to wear the mask
Each and every day.

Faking It through December
Is Exhausting!

Thanks to


Saturday, December 3, 2016

December- The Hardest Month of the Year

December
My least favourite month of the year.

The month with the greatest expectations.
The month with the most hype.
The month of the most pressure.
The month where family loss is most keenly felt.
The month where some are included in celebrations while others are left behind.
The month where abundance rejoices while hunger and want are felt the most acutely.
The month where there are reflection upon the past year are done.
The month that has the most dying by people who can't hold on any longer.


December
It's not the fault of the month itself.
It is just that all the bad stuff comes along with the good stuff.

Great expectations that can never be fulfilled.
Hype that feeds the expectations and rubs in the inability to fulfill them.
The pressure to meet the expectation that cannot be met- and the stress and grief that brings.
Family loss is felt most acutely at a time when family gatherings in joy are one of the month's themes.
Celebrations and gatherings all around while the outcasts are unwelcome to join in.
Hunger and want in the face of poverty and disaster while abundances are shoved in their faces hurts.
Reflections of a year drawing to a close for those in pain brings despair.
The dying's- people who have held on until the holidays to share them with loved ones, the road deaths, those who's grief and despair overwhelms them.

One great month is December.
From ancient times it has been a time of celebration.
The days of darkness reach their end and light begins it's return to the land- when you live on the north side of the planet. On the south side it is the end of ever lengthening days and is the start of the return of the darkness. If you live around the belly of the planet the days always stay the same.

But I live where the days grow short and cold.

Shut in, stressed, and grieving.

Try as I might to "cheer up",  and work at it I do,  every day as I endeavor to bring laughter and light to those who are hurting as much as I am, every day is harder than the last. Every day more stressful than the last, every day watching the needs grow and the resources diminish ever further. Every day being reminded of things that have happened in Decembers past that are loaded with great pain- even ptsd type pain. Every day seeing things I do not want to see, hear things that pain me to hear. Every day having to push harder to get through getting those things done that are needful to get done. Every day feeling alone as I spend most of the days in my room- alone. Every day feeling so much physical pain and sickness that doing anything at all is a struggle.

It is all that I can do to not dissolve in tears- give up- and die; Gladly and gratefully put an end to the pain and misery in the only way permanent that it can be done. To hang on one more day in the thin, vain hope that miracles can and do happen- while knowing full well that the odds are not in my favour on any of the stresses and pains lifting enough to make any difference at all and that things can always get worse unto death.

December
My least favourite month of the year has come once again.

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.