Oh, Sunbeam

Oh Sunbeam, where did you go? 
You were here but a moment ago. 

Golden warmth shining on my garden patch bringing a smile into my heart. 
The day does darken as the sky goes grey. 

Oh Sunbeam, already I miss you, don't go away.
 A break in the clouds brings you back to me for a minute or two. 

Please, can't you stay? 

Oh Sunbeam, in you I want to play in a bright and sunny and warm spring day.

~ Half Alive ~

I'm feeling half alive today
Half of life is missing
I'm seeing half the world today
Half the world is missing
I'm feeling half of what I touch
I'm smelling half of smells
My feelings are also set at half
I feel something is missing
I feel half of me is left
Half of me is missing
A half of this and half of that
Half again and gone away
Half the sights and half the sounds
I'm here and yet away
I'm half awake and half asleep
Half nightmare, half day-dream
Half too hot and half too cold
Half every other thing
Brain and body working half
Halfway things get done
Half remembered half unknown
Halfway yet to come
Yearning for my missing half
Half alive I am today
Half aware my future past.

P.E.Griffiths, 2015

Poem : Life Fog

ugh, another week.
where did the last one go?
the calendar date cannot be right,
but it is
time moves on around us
leaving the slow behind
and I am slow at times
stalled and stuck
like a daze or even a coma
body jelled, heavy, set
gravity increased
stuck in thick mud slow.

How to Support a Loved One - Nutshell Version

I was asked  by a fellow for advise on what he could do to support his partner as she was going through a rough patch. I told him this:

Love her. Let her know how much that you love her, that your love is unconditional and that you will take care of her when she is needing care just as she takes care of you. Our biggest fear is that we will end up alone, unwanted and unloved, useless and worthless. Let her know that you will move heaven and earth for that to never happen to her. Encourage her. Let her know how much you appreciate the things that she does, especially those things that she must struggle to do today that were easy to do yesterday. Allow her to mourn the loss of the self and life that was before she got sick. Because of the relapsing-remitting nature of M.E. the losses never stop and the grief never does either. Celebrate the good times, the good days. Those are precious and often rare. Court her. Be her prince each and every day, even more when she is feeling more like a frog than a princess herself.

Supporting a loved one going through a tough patch can be a difficult and frustrating thing. People often have no idea what they can do to make better a situation that they have no control over. They give up and turn away just when their loved ones need their help and support the most. 

People write long articles giving advice, mostly useless. I won't do that here. That nutshell of advice is perfect as it is. 

Rambling Thoughts Upon The Theme of Quality of Life - July 4, 2014 .

Summer is traditionally a time for vacations. A vacation is a break from daily life, isn't it? A break from the stresses and strains, a time of rest and recreation and maybe a bit of adventure on the side? Some stresses and strains, such as chronic pain and health problems, are impossible to truly get a vacation from. 

I came across a comment today, about a blog article by John Molot on the way that there is no vacation from pain by those who suffer from the endless pain of Fibromyalgia. The part of the comment that resounded with me was : "Too many do seek "relief" in suicide, or do consider it, since Quality of Life is so poor and frustrating. "

The comment that I added was: "When every day is an exercise in futility, filled with exhaustion, confusion and gut knotting physical pain with a future so bleak that it holds only isolation, poverty and the ever worsening of the torture of daily physical existence, is it any wonder that people chose to seek the relief that only death can bring them?"

 

The Quality of Life of those living with ME/CFS (along with Fibromyalgia and Lyme) has been described as being equal to HIV-AIDS persons in the last six months of life, or or cancer patients in the last few weeks of life. Unfortunately for us this can go on for decades, they dying being done in excruciating slow motion. Is it any small wonder that some people just want to get it over already? We do not get better, and we do not die. I know that many of our friends and family cannot take the strain of this any better than we can. Many give up on us very quickly. They grieve for the loss of us in their lives, and they move on as if we had physically died. Even our doctors cannot cope with people who neither get better nor die, but only slowly get worse with ever more complex problems. Most people have one or two chronic health issues in their lives, they don't add more and more problems as their bodies slowly fall apart. 

Is there anything more frightening than the thought of an endless, living death? Just a couple of years ago ( 2011) the sci-fi/fantasy show "Torchwood: Miracle Day"used this as a theme, with the dead and dying who could not heal nor entirely die. 

But we can die, and eventually we do.

I have lost count of the number of friends, acquaintances, and friends of friends who have taken their own lives because they could no longer live with the chronic pain, sickness, hopelessness, caused by ME/CFS, Fibromyalgia, and Lyme Disease. Suicide, in fact, has been the most common cause of death among the people among this group of people. Complications from these conditions, including rare cancers and heart disorders, comes in second. Death from accidents and "normal" causes fills out the stats.  Since life itself is a terminal condition, we all have to die of something.

But we have to live until we die. 

Sometimes the living part is the hardest part of all.

 

 

One day at a time... PEM strikes again

I saw a meme today that read:  "I try to take things one day at a time... but lately several days have ganged up on me at once."

Oh, how I can relate to that. It's called Post-Exertional Malaise, or PEM for short. It's a delayed response of the body to exertion of any kind, be it physical, mental, or emotional. Sometimes the delay is as little as a few hours, but sometimes it can take days to set in. 

I hate waking up feeling sick, that feverish feeling where the world is off kilter and neither the eyes nor the brain are willing to focus upon anything other than not falling off the bed. Like most people with chronic autoimmune problems it's not unusual to wake up feeling worse than I felt upon going to sleep. This more often happens when I have had a good and active day before. Sometimes I can go for as long as three days of feeling reasonably good, being able to operate comfortably function as I putter throughout the day. Then I get nailed for it. Payback is always a bitch.

Sometimes it happens suddenly, as if my energy plug got pulled.
Sometimes it comes on slowly, building up un-noticed until I land on my butt unable to get back up again.
Sometimes I just wake up feeling flushed and flu-ish, fogged and confused, weak and wonky.

Sometimes it feels like a floodgate of pain has been opened and the mess dumped upon my head all at once.

                                            (not my artwork, author unknown to me)

And the worst of it is that a person can never know what it was that was the "over doing it" line so as to be able to avoid doing it again.

Bad Timing Is Everything.

It is frustrating how all it takes is one annoying thing to ruin an entire day. 

Not that it was all that good of a day to begin with, but it wasn't really a bad day. 
You can feel like you are holding your own and then something happens to cause a startle of some sort. 

A bump in the road. But that bump feels more like a pothole.
It kinda knocks the breathe out of you, causes confusion. 

An annoyance that feels like a crisis. The brain locks up. The body goes into panic mode. It becomes a crisis in the moment. 

Brain Overload!  TILT! TILT! TILT! 

The next thing you know you are on your butt with those cartoon stars circling around your head. 
The rest of the day you feel like a punch drunk boxer. 
Headache and exhaustion, jumpy on the edge of panic. Body hurt all under. Stomach in knots. Nerves shredded. 

All because something happened today, on a marginal day, instead of happening on a good day, when it would have been only an annoyance.