Saturday, December 28, 2013

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

Thursday, March 7, 2013

It Never Gets Any Better.

It Never Gets Any Better.

I've been in a battle for my life for as long as I can remember. A bout of polio at the age of four left me with weakness of my body. I had to get stronger before I could stand up and run away from an abusive "uncle" who enjoyed sexually assaulting young girls, and tickling me into asthma attacks. Of course when I told my mother she beat me for saying such evil things about such a good man.

I was smaller than any kids my age, and soon my younger brother was bigger than I was. He was a bully and mother doted on him. He would get into trouble and I was punished because either he would convince our folks that I did it, or my folks would decide that that it was my fault by proxy. I was the older one and I should have stopped him, even if he was bigger and stronger than I was. I'd get a beating either way.

At the age of 5 a local bully decided to target me. She terrorized me so thoroughly that I had a nervous breakdown. I put up a mental block to forget about anything about my personal history, a hysterical amnesia. I couldn't remember what I did the day before and I could not pick my parents out in a crowd. General knowledge was still there. I had a "genius" IQ and could read by age 4. It took ten years for my memory of me to resolve.

At school at least my love of learning was something to look forward to. But there were bullies there as well. I was too smart and too weak and I didn't fit in. I made a good target throughout elementary school. There was no safe place for me to be.

My mother did not believe in vaccines, so I got none. I did get every bug that I came in contact with. I was often sick.

By Junior High I was able to get away from my tormentors for a couple of years. My mother died that first school year. It was hard. My brother acted out. He was much bigger than I was, and nearly double my weight. Somehow our father still felt that I was supposed to keep him out of trouble and doing his chores around the house. I'd get beat if he didn't do his stuff, and beat if I did it for him. When our father wasn't around my brother made sure that I got very little to eat by taking it all himself. Father was a shift worker and often we had to cook for ourselves.

I caught a flu from hell in December of 1971, that left me unable to remember how to do math. It was terribly frightening and no one had any idea what to do about it. I had to relearn what was easy to do a month before. I was never physically all that strong, but after that flu I never did get entirely better.

My father remarried to a woman he did not love to give his children a mother figure and to provide a caretaker for the family. He was conned. What we got was an evil step mother #1. She moved the family to another town in a different province, then took as much money as she could, and left. Her idea of taking care of family was to raid the family vacation piggy bank that we all put coins into, lock the doors and go into town leaving my brother and I standing outside shivering in the winter cold until she got home. We were not allowed a key because it was thought we would get into trouble and wreck the house if we did. In less than six months she was gone. One day she was there, the next she was gone. Where she went I still do not know.

Of course, when she left I got the blame. Somehow it was all my fault that she left.  

Father took it all in stride. He got a divorce. He decided that I needed woman training and told me to get dressed up to look older and dragged me out with him to his favourite watering holes. I didn't get any booze, but plenty of "old men" as old as my father or older tried to send me drinks. I was terrified! I wasn't allowed to wear makeup, or date, and suddenly I was thrown into a place where I didn't want to be. Underage people are not allowed into bars and lounges where I live, and I learned that if I whispered to a barman while going off to the ladies room that I was underage my father would be politely told to take me home and not bring me back again. Otherwise there would be a scene when someone else brought it to the attention of the staff. Even when my father got a girlfriend he tried to take me along a couple of times, until he was threatened with the police being called.

The girlfriend ended up moving in, along with two of her sons... and she tried her best to get rid of my brother and I. Evil step-mother #2. Her youngest could do no wrong, and the other son was the same age and size as my brother. As the target of the same kind of bully-boy shit as he had pulled on me he soon stopped targeting me. I often went hungry as I was no longer allowed to cook for myself, and for a full year I came home from school, by bus, after the supper has been served. There was never anything leftover for me to eat. The boys got allowance money, while I had to babysit to pay for my kotex, clothes and school lunches.. which when I could afford any was a tiny cup of yogurt. It was often my breakfast as well.

I got a boyfriend who was a year ahead of me at school. His family often fed me, and often it was all the food I got. At home I was forbidden to touch anything that the boys claimed as theirs. Only the rare leftovers were available and they were often rendered inedible with salt, spit or even excrament. My father did nothing but beat me when I made an issue of it.

So when I turned 18 I got engaged. That was the last beating my father ever gave me as it was the first time that I fought back. I moved out two months later, as soon as we could arrange for an apartment. I soon was pregnant, and hospitalized with a kidney infection. I was married on my high school graduation day. Somehow I had kept my marks up enough that I graduated with university entrance grades. 

I ended up as a young mother, with fragile health... and no idea what I was doing. I learned. I did the best that I could do with what I had to work with. We struggled with poverty and two children with behavioural issues. We went to university to better our educations and to get better chances of employment. We battled with the schools on behalf of our children, they both have genius IQ's along with the behavioural issues. Poverty followed us. Life was never easy, but I always put my family first and did the very best that I could with the resources that I had.

Over time my body grew weaker and sicker. I saw doctor after doctor. No one could help. Their ideas of more exercise only made things worse. I didn't give up. I just worked harder, often to collapse. Then I got myself together again and did it all over again.

A hysterectomy in 1989 was a hit to my body that it could not recover from. I was already so ill that I couldn't work. No employer wanted a worker who was sick in bed every third week, as I was with the effects of endometriosis at that time. I nearly died during the surgery. My strength never recovered. I tried to go back to work. I went through a retraining to work program. I worked as a chambermaid, and then a driver for a florist shop. I had an accident at work where I injured my shoulder, and my health collapsed. 

Finally I had a diagnosis as to what was happening to me. Not the fibromyalgia that I was diagnosed with in 1986. Not the IBS/IBD that I was diagnosed with in 1978. No, Myalgic Encephalomyelitis... a disorder that had been draining my health since that hell flu in 1971 and a disorder that is much misunderstood and maligned by the medical world and society at large. A disorder that has much overlap with atypical MS and with Post Polio Syndrome. A disorder with no cure and few treatments. Something I needed to learn as much as I could about since few doctors knew anything at all about. 

Even after I became so severely disabled by ill health that I was unable to work outside the home I worked at home to battle poverty with my skills in gardening and cooking, and working the local grocery stores and thrift shops for the sales to keep us clothed and fed. I was the house mom for the local teenage hangout for the throw-aways and run-aways and generally troubled kids. Our home was a known safe house in the community throughout the 1990's. 

Come the new century, life centres upon my hubby, my cats, and myself. The family is grown and gone. My hubby had job changes. We moved to another home, one bought with our son where he lived his own life for some years in the large lower in-law suite. Cats grew old or got sick and died. Hubby had a heart attack and has stents in his heart. We saw the one son for Sunday dinners, if he didn't have anything else to do. The daughter moved to OZ. The fosters kids went their own ways. 

For 20 hrs a day, up to 7days a week, I am alone with my cats. My health continues to fail. I live in my bedroom. I have my laptop and my TV. I have a door to the deck and a small garden of pots with plants. This is my world.

Two years ago I was able to enjoy a veggy garden, able to do artwork, able to go out on my mobility scooter for a few hours a week to go shopping or just ride for the pleasure of being out and about. That was then. In the past year I've become housebound and bedridden. My sight has taken a hit and blindness is a possibility at any time, quickly from one condition or slowly from a second one.  My gallbladder has filled with stones and has been causing all sorts of problems. My blood pressure suddenly went up causing all sorts of concerns from my doctors. My hubby suffered two years of unemployment. Our son got a girlfriend who got pregnant and he bailed on his financial obligations on our home, and moved out. The girlfriend has used aggression, threats and general nasty behaviour to make life difficult in order to have the family home sold so that she can gain access to the proceeds, and she wanted all of them. That the upshot of her actions would have rendered my hubby and I homeless at a time of his unemployment meant nothing to her. When we said "No Way!" she went into mind-fuck mode and the grandchild has been used as a weapon to use to cause anxiety and anguish. She has withheld access and made whatever access I have had torture of look but don't touch, don't interact. The year from hell included poverty caused drug withdrawal for me, which on top of the ongoing hell caused an emotional break down on top of the physical one. It included accusations of abuse and neglect from the daughter in OZ for things that never happened, threats and blackmail attempts in order to extort confessions for acts that never occurred. It ended with acts of such unforgivable cruelty on the part of the supposed family that I wanted to die to make it all stop. I have been hurt beyond all hurt that I have ever been hurt before. Full PTS hell and then some. I am broken past all hope of healing.

It is early March of 2013 and life has not gotten any better. I am weak, I am sick of body and spirit. I await gallbladder surgery at a date so far unknown in the future. I await the next hit from so called family to come to destroy what fragile stability I may have attained. I know that we will have to move no matter that this was supposed to be my forever home and I love it. The hell goes on, and on, and on.

I've been getting counselling, of various kinds from folks from various disciplines, for more than 40 years now. I've learned to meditate, do yoga, and biofeedback became automatic many decades ago. I've done gluten free, dairy free, low sugar, and red meat free. I've done high fibre and low fibre. I've done organic gardening and cooking from scratch. I used diet to help with one child's ADHD problems and the other's gut issues.

For 40 years I've read, I've struggled, I've learned, and I've adapted.

Heck, even writing up this blog is my taking the advise from those who counsel me as a way to deal with my struggles with living. Even my blog has been a source of attack by the cruel gold-digger who was embarrassed by what I have written. If she did nothing wrong, why would she be embarrassed?? She did not accuse me of lying, only of causing her embarrassment. 

How can a person "get help" without talking about what they need "help" about??

The very best results that I have ever been able to achieve was to hold the shit at bay, for a time. The shit always wins, in the end. IT NEVER GETS ANY BETTER. IT just stops getting any worse, and it can be adapted to. Getting better is an illusion, only an illusion and nothing more.

Today, when I woke up, my misery was at a level of 8/12. I have no idea why it is on a scale of 12 rather than 10, but when I asked myself that is what my mind replied. 8/12. 
I did not want to get out of bed. If my cats had not urged me to get up I would have stayed in bed. That misery scale includes physical pain and illness, and mental distress. Maybe that is why it's a 12 point scale. 12 is blind misery, overwhelming misery. I was there on January 1st, 2013. 

Maybe some day it won't stop getting any worse. I have given up on the idea that life will never get any better for me. Only in death can I be sure that it can't get any worse.  

Wednesday, January 9, 2013

Christmas: The most terrible time of the year.

Christmas is not one of my favourite times of the year. Christmastime of 2012 was the worst of all.

Not only did we have no family to spend the holidays with, we were subjected to cruel mind games on the parts of our children.

What our son did to us was beyond cruel. We were not allowed to spend any time with our grandson at all, but were twice invited to spend time only to have that invitation revoked at the last minute. It was rubbed into our faces that there would never be a Christmas where we would be able to spend time with our son and grandson again. They would be moving away in the coming year sometime, to where they did not yet know. The only family that counts is his wife's clan, and they hate anyone not of their clan.

It's OK for her to attack us, but it's not OK for us to fight back or defend ourselves.

It's not OK for me to take the advice of my councellors and blog my pain.

It is not OK to do anything but go away and give them all I have before I do.