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.

Poem: Not Today

Not Today

Do not ask me to do today
that which needs not be done.
Expect me not to be so strong
that I may be your rock.
Not today, I need to rest.

Do not question me today
and expect an answer now.
Expect me not a know your mind
when I cannot know my own.
Not today, I need to rest.

Do not expect me today to know
what I knew but yesterday.
Tomorrow will be soon enough
or maybe another today.
Not today, I must to rest.

Do not push and do not scold
that I may be motivated.
Pushing myself I do now, as is,
and every day in turn.
Not today, I must rest.

Do not minimize or deny
what you do not understand.
I seek not to burden you
and earn your unrelenting scorn.
Not today, when I feel so alone.

Do not assume what you cannot see
or what you cannot know.
You are not here, never around
to catch me when I fall.
Not today, when I feel so alone.

Not today, when I need to rest.
Not today, when I must rest.
Not today, when I feel so alone.

May 24, 2014: Anxiety and Grief to the Edge of Panic

In Limbo

I sit here, alone, looking out of the glass doors to my second floor back deck trying to calm myself from another attack of hard, angry emotions. The month of May has brought the trees and bushes that line our property into full leaf, hiding most of the world beyond from view. What it cannot hide is the huge pile of topsoil that towers over the high wooden side fence, behind the high lilac bushes and cedar tree. On top of the earthen berm sits the digging machine with it's bright yellow arm bent to lay the bucket upon the ground.

On the other side of the yard, through the trunks of evergreens and willows and a hedgerow of red dogwood, willow, blackberry and wild rose a long berm of broken rock runs the length of the property. The acreage, aside from the immediate area surrounding the duplex there, has become a storage site for the earth and rock that will be used in the 50 house building project that is eating up the area that has been our home for the last dozen years.

The first phase of the development is being built. Our property will be needed when it comes time for phase two to be constructed. That is currently scheduled to occur this coming October. It had been scheduled to happen last October. It is up to the developer when they will close on their option to purchase for our property. We are in Limbo, knowing only that the day will come when we will have to find a new home. 

Anxiety and Grief

I do not want to lose what was to be my forever home, but that is not an option. Every time I look out into my beloved yard it is difficult for me to not be hit with a wave of strong emotions for I know that this is all scheduled for destruction. The chances of our being able to ever again be able to live in such beauty. Here lies the work of my hands, my heart, and my soul. Here lies the graveyard of my beloved feline family, slated to be dug up and destroyed. I love this place so much that I cannot see ever finding another place where I will ever feel happy again. 

When I walk around my house I have been looking at all the things that are wrong with it, why we would be better off moving to a more "handicap friendly" house. I try to convince myself that what was my dream home is really just a money pit that we cannot afford to fix up, or to even live in any more. I tell myself that I do not need the things that have been collected up over the 40 years of marriage, of raising a family, or building a life. But I have no idea where we will end up, what will fit into wherever that may be. 

After spending the majority of the past two decades housebound, at best being able to spend time puttering in my beloved garden, my entire life is woven into my home. My human family is all but gone. I have my husband and of six elderly cats. My husband calls them my minions, even though he loves them as dearly as I. Four of the group had been dumped upon us by our kids, who have also berated me that we have too many cats. My artwork fills my home, the craftwork of my hands and heart. 

My house, my garden, my cats: My world. A world that I am going to lose. I just do not know when or how much I will be able to salvage.

Working with Nothing for a Future

I am afraid that the next person who implies that since we will be getting money from the sale of our property that we will be able to live anywhere that we want to may well end up feeling like they have been attacked by a buzz saw. What I want is the be left alone, in the house that was to be my forever home, with the repairs and upgrades needed to deal with the needs of my disabilities. 

As is, even with that money we will have we could not buy the least of the new houses being erected as part of the development being put up upon the site. We need to look at our long term needs as we are getting older. Security is a huge factor, security for now and for the future. I am very much afraid. Our household income limits our options greatly. Our retirement home is gone, that security is gone. After the mortgage is paid out, and the funds divided with out son for his share of the equity there really isn't that much left over to buy another home.

Where can we go? The choices are very limited. We have to be able to afford the home, wherever it may be. It needs to be handicap friendly. I need a place to garden. I need my cats. I need a place to park my mobility scooter. Hubby needs his workshop, a place for his bikes. We need a place that can be made into our "forever home". No condos. No strata. My old cats need me as much as I need them, I cannot abandon them any more than I could human dependants. The very idea of living in an apartment or condo sends me into a claustrophobic panic. (anxiety, confusion, hopelessness, panic, grief) Rental? Only if we use up our life savings, which we have put into the home we are losing.

Unless Hubby can secure a well paying, long term job in the immediate future we may be forced into a situation that I cannot see my ever recovering from. 

We may have to leave our home community of 30 years to find a place where we can afford to live humbly.

Attempting to Live-In-The-Now

One good thing about bouts of heavy brain fog is that living in the moment is about all that a person can accomplish. On the down side, living in the moment is about all that a person can accomplish. (confusion rules)

Live for today, for tomorrow we may lose it all. (anxiety, panic, hopelessness)

I have not been very successful at shutting out the anxiety causing parts of my existence. Grief has the strength to cut through almost anything. The only way to get through it is by going through it. Until I am not faced my every waking moment by what I am losing that grief has no possible resolution. 

To try to distract myself from the realities of life doesn't work too well when there is no way to get away from it. Not when the world is slowly crumbling and there is not the financial resources to cover daily needs let alone to fix and replace needed things as they break down. The old dying car, the broken down stove, the rotten stairs. There is only so much that can be done without. Only so much can be deferred until the house sale is finalized and there is money to pay the bills.

I am worn out by this endless insecurity. I spent all winter living out of my bedroom since we could not afford to heat the house, rationing the hot water because of the cost of heating it. Of going hungry and trying to keep hubby well enough fed so that he doesn't get sick. Of doing without comfort. Of being confined to the house because it is too expensive to put fuel into the car to drive across town to go to a beach or park. Because I cannot take a bus because of my disability even if I had the bus fare.

The now is a place of hopelessness.

Wrap Up of 2013

Is it over yet??  
Almost, not quite.

I'm hoping that the crisis that began this year doesn't do an encore appearance. I'm hoping that I won't need to revise this piece before Jan. 1. 2014.

Here I sit, in my room. On my computer. TV on. Cat at my side.
Not much seems to have changed over the the past year, or since my last update in March. It's just more comfortable for my to be in my room, that is warmer than the rest of the house. It is a dark, wet winter day and we can't afford the cost of heating the entire house to a comfort level.

I had surgery to remove my gall bladder in early April of this year. Almost immediately my health went into a recovery mode. The post-op doctors visits had the doctors apologizing to me for the five years of misery that I suffered from a diseased gallbladder. The pathology report had read of the scarring of many infections and stone passings, chronic inflammation, and an organ filled with "innumerable small yellow and green stones". The only good comment was that there was no indication of it being septic at that time.

I have been left with damage to the pancreas and liver and will have to take digestive enzymes for life as my body no longer produces the needed enzymes for digestion. Thankfully many drug and supplement shops carry them. Not all brands are of the same quality and I must be careful what I buy. 

I did have the best summer that I had in over five years. My GP went from advising me to look into end of life options to amazement, saying that he felt that I was doing better than I had in the past ten years.

Still, I have a body that has problems that cannot be easily overcome. The nerve damage of the childhood polio. The arthritis that has continued to eat away on my joints and pinch nerves. The IBS/IBD issues. I had a weakened body deconditioned by being bedridden. The problems with damaged mitochondria didn't suddenly resolve themselves. I still was battling three eye conditions that threatened to steal away my sight.

It was a good summer. On weekends we would spend a day out going to parks, museums, beaches, and off to picnics. I was able to garden more. I could do my artwork and sewing crafts again. A few hours a day of activity was a huge improvement upon none.

By September I was done in. A summer flu bug was enough to trigger an end to the recovery cycle and I was back into a relapse. Since then it's been back to a couple of hours of expendable energy a day, and that gets directed to use in the kitchen. I enjoy being able to cook from scratch, and with our current levels of income if I don;t cook well then we do not eat well. Since my husband now works 7 days a week at two part time jobs he needs the best nutrition that I can give him. My fragile health also needs the best that our limited resources can provide.

Also in September I had my visit with my eye surgeon. My glaucoma had gotten worse and urgent surgery was needed. I had laser surgery to drill small holes in the iris of both eyes to drain away the excess fluids of the eye, which was declared successful. The surgery, although minimally invasive was traumatic. Only one eye was adequately numbed. In the right eye it hurt like hell as jolts of red lightning seared into my brain through the eye. It was all I could do to not scream, but I have had a lifetime of practice stifling my screams. The surgeon gave me the option to stop and reschedule but I said no, do it now before I lose my nerve. Another jolt and it was done. Again she asked if I wanted to stop as the left eye needed to also be done. Again I said I wanted to get it over with then. With that eye there was a yellow-while light and a slight sense of pressure and nothing more. I still have the cataracts and the chronic dry eye/sjogrens syndrome attacking my vision slowly. My world is slowly getting darker and hazier. The surgeon asked me at the post-op if I wanted to deal with the cataracts soon since I was having noticeable double vision issues. I declined as the thought of another eye surgery that day was overwhelming. So I wait until next spring to see how things go. The same for anything more than the OTC eye drops for the dry eye that has begun to cause scaring to the cornea.  Some days I need to use the drops more frequently than others, as my eyes hurt as if I had gotten something caustic or abrasive in them.

As I said earlier, my house is cold. There is only so much money to use for  everything that we need money for. Thankfully the climate here is mild, for Canada. Some years we do not see snow, but this isn't one of those. Part of the home is heated with electric baseboard heaters. Most of the house is heated by oil. My bedroom has a heater. The rest of the house gets minimal heating, upstairs that is. Downstairs the rental suite is electric heated. Our hot water tank is also oil, and once the oil tank is empty we don't know how we will manage to come up with the fund to buy more. So we conserve what we can. The house doesn't freeze, even if the the temperature brings pain to my body. It would be nice if I could have nightly hot baths to ease muscle spasms and pull the cold from my bones. But I can't and there's nothing that I can do to change it. If I gave up my TV and internet it wouldn't make much difference money wise, but would be devastating to the quality of life for me. Since I cannot get out in the world I need to be able to bring the world in to me. Spending 20 hrs a day alone with my cats doesn't help much mood wise.

I still have no contact with my adult children. I cannot say that I want any contact. I fear such contact will just open the yet unhealed wounds wide open again. I am a year into the 18 month long cycles of grief and do not wish to have to start them all over again. I cannot bring myself to trust anything about either of them. There has been no indication that contact would be in any way safe for me, but instead indications have led me to believe that it would be anything but. I have little contact with anyone outside of my online family and friends.

 I am still too fragile to tempt crisis. I tried going out to a Christmas party for one of my husbands jobs. It was too much. Too much sound. A rapidly spinning disco ball flashing light around the room triggered temporal lobe seizure activity. Then they spring upon the group that they had hired a murder mystery dinner theatre group for the evenings entertainment and that someone in the room had a pistol loaded with blanks, that would be fired sometime that evening.. so don't panic when it goes off or when people drop apparently dead. Thankfully hubby noticed that I was looking as if I was in distress. The food was just being served, over an hour late. I needed to leave. Guns and I do not mix. PTSD issues. They hit, panic upon seizure activity. I could barely control my body well enough to leave the hall.  I don't get grand-mal seizures very often but it was a close call that night. We stopped at an A&W for a burger on our way home as we were both very hungry. The food tasted awful to me... part of the seizure activity manifestations. 

Christmas was a non event. We had a small turkey and had a nice meal. No decorations for the cats to enjoy. No visits or invitations to visit. But for the kindness of a few of my internet friends there was no indication that anyone cared. I had managed to do some baking, build a feast. We watched a Dr.Who marathon on TV, and the Christmas special. It was all that I had the strength to manage. More than I had the strength to manage as I crashed badly for the next two days.

Now the year is at it's end. Three more days and it's gone. Dead and gone. 

It ends far better than it began, even if I am living out of my bedroom just as I did at the start of the year. The struggle continues. Life is a struggle, then you die. 

Pain Poem.

Pain Poem

arrgh... owy... ~sigh~, oh well
My hip is giving me more hell
It hurts to sit, it hurts to stand
It hurts to walk
It hurts to lay on my side
Stairs cause me to stifle a scream.

owy, owy.. whimper, ~sigh~
And thus another day goes by
Not focused upon what I may do
Not upon what I may try
Not focused upon where to go
Reducing pain becomes the only goal.

~sigh~, owy. ow, oh yeah,
I still need to cook a meal today
I still need to figure out a way
I still need to get up
I still need to move
But once the pain spikes I'm lost.

yip, yipe...owy, oh
What to do I do not know.
In the pain I cannot think
In the pain I cannot rest
In the pain I cannot move
I am lost in the pain.

~ phyllis griffiths, 2013