Last Days in Gympie?

He phoned because he was so miserable.  Having Cohen every second weekend is making it worse for him and living in that house without a family has been really getting to him.  I'll guess that he is depressed and begging for her to come back probably made it worse.  He was so upset on the phone.  He didn't want to give Cohen back and has in fact managed to keep him for much longer than the weekend because she got kicked out of her Mum's house.  She also let the registration fall on the car so he has no car now until his Dad comes to the rescue with 4x4 dual cab which will have to be painted etc.

He has Cohen until Sunday which means that he has not been going to work either but he cares little about work now that he realizes that he wants to get away from Gympie.  None of his friends are there and without his family there it now means nothing to him.  He phoned me to see if he could stay here after his lease runs out on Dec 10th but already things have changed.  He wants to move to HB to be closer to Cohen and also because it is clear that she will not live in Gympie again.

It is a real shame that he is going to give up that job but to tell you the truth, I would not want to live there by myself either if it was me.  Roger wants him to forget her and move on.  Most people do.  He insists it is for Cohen but I know his feelings for her are so emotional that he really cannot be sure what is tormenting him about her moving on.  But now that she has given her approval to him moving up there, albeit in separate accomodation, I think that is what he will do.  She always did want him to move there since her mother moved there.

If he came back here to the Coast then he would hang out with his binge drinking mates especially if he was feeling miserable about losing the closest thing he had to a family life.  The only thing I have suggested is that it would be better to line up a job before he moved anywhere but now it looks like his Dad will be the stop-over point between leaving his current house and moving on to the next.  There seems little point in renewing the lease.

Today he has renewed enthusiasm because he also is saying he is going to give up smoking and drinking for New Year for Cohen.

As for me, I still feel very ill and I cannot see how having that son of mine living here would help me much.  I cancelled another dental appointment because I still have not recovered from last week.  My glands flared up even more, strange neck symptoms and I wondered if it was fibromyalgia from holding my neck muscles open in the dentist chair but it feels more like a virus to me as per usual.  Stiff, swollen inside neck, dry eyes, dry mouth and throat, still that burning, aching joints and muscles (often unbearable), light intolerance and terrible trouble with regulating my body temperature.  I can be sweating and using a foot warmer all in the one day and I am still wearing a scarf around my glands.  I wish doctors made house-calls.

The other one started a new job selling Austar this week but he was about to move house when I spoke to him because he is fighting with Pete.  It is a better reason than my health so maybe that means he is not making psychotic connections this week.

This year has been a hell of a ride

What is this native tree? (Tropical Birch is in foreground)

I know I am crashing when my eyes get sore and gritty and burny and I am forced to persevere with squinting if I am to entertain myself at all with the computer.  I get jumpy when I crash too.  Little things give me a fright. Noises can be aggravating.  

It is really hard to define how it really feels when you are ill with something no-one wants to know about.  You can be suffering so deeply that you know your body is struggling but it is hard to describe the symptoms.  They are so many and varied but we know that Myalgic Encephalomyelitis is multi-systemic in expressing its neurological breakdown.  When I am going to crash I often can't warm up even though I know I should not be cold.  I can wear a singlet because of the heat and a scarf at the same time because my neck has been sore all year in varying degrees.  It can be sore in a viral way like sore glands or it can be sore in a muscular-skeletal way especially if I lie on it the wrong way and wake up to those strange sensations I get in my head that I only know how to describe as dizziness.  All I have to do is change a facial expression to produce a sensation of disorientation.

I know I am crashing when I get cold feet and lie in bed for hours waiting for them to warm up.  My body often needs a helping hand.  I use wheat bags and such-like when I have the energy to attend to myself.  Many times I just lay there because I am desperate to be horizontal and cannot push myself to tolerate the dizziness or the heart that will race like mad once I stand up. And I am just as likely to feel faint from doing that.  As well as loud, fast beating there seems to be a vibration inside every single cell that I can feel or a rapid hyper mini contraction of all muscles at once?  I have no idea what it is but sometimes my eyelids flutter a lot when I close them and things just feel shakey all over but it is imperceptible to the eye.  "Molecules in motion" I have called it and I wish it would stop.  It will.  It always does after I rest completely which means sleep.  How much sleep and rest I need depends on the severity of the crash.  For the past two weeks I have been able to go out a couple of times a week with crash days in between.  Many experts would say I am therefore doing too much too soon.  Nevertheless I have felt obliged to keep my dental appointments especially if I am not going through another feeling of being in a panic attack physically but not mentally.  If I can mentally cope with the anxiety I always have about feeling the drill (gained from past experience) then I definately put on a brave face and go anyway but I am starting to become aware of what it is in these kind of experiences that is causing the crash I have the next day.  The bottom line is adrenaline.

It is adrenaline that makes us feel nervous about going to the dentist, I would assume, so I expect my heart to race then.  It usually settles down once I am in the chair just like it does for you.  But yesterday I wasn't particularly nervous.  Sometimes I feel unreasonably nervous and I then think something chemical (and unexplained) has kicked in to cause this.  But I was just "normal nervous" this time.  I had already had a root canal in the tooth that was getting a post put in it in preparation for a crown.  I was very relieved to find that indeed the tooth was dead to pain.  Not so the gum.  Don't like those clamps and metal wedges.

When it was over, you could not wipe the smile off my face.  I had not been too bad that morning but the day before I wondered if my body would not be better off having a bit more "no stress" before challenging it with my natural nervousness via a dental visit.  The sore blurry eyes hadn't settled from the last crash (which resulted from nothing more than shopping at Pelican Waters and meeting Karla for lunch there).  What is it that I am doing that my body sees as stressful while I am out?  I laugh a lot and talk a lot.  Yesterday after the dentist I smiled a lot and I told someone how elated I was feeling now that the dentist trip was over.  I felt lively and I had several phone calls.  Instead of sitting down I think I paced while talking on the phone for over an hour.  I am starting to become aware of my own adrenaline surges that are causing the crashes and they mostly occur when I am having fun!!!!  Call it an adrenaline high but if that is what keeps me bubbly and laughing and feeling good, no wonder I got addicted to it.  Some how regardless of my problems with my heart rate going up too much when I stand I think I also have to learn how to be happy without being "exited".  It is like asking me to undo my personality.  I am happy when I am exited and anticipating or experiencing something nice.  I can feel exited by just stepping outside of dentist not to mention how animated I become when I wake up feeling like it is going to be a good day!  It seems people with M.E. have to be wary of extremes at either end of the continuum.

Back to the present - aching all over, sore throat, sore eyes, sore glands but not too dizzy today.  Nevertheless I can feel my body crying.  It is a pain that I can ignore by keeping occupied but it is a little too much pain for me to just lie there and put up with.  My body would appreciate as little sensory input as possible but for the pain I need to keep feeding my body with sensory input to use as distraction or find a pill that works enough so that I can lay in comfort. I am not good enough at meditation to co-exist with all levels of pain or transcend it.  I can usually get myself into a state where I can go to sleep but not always.  There are many fighting for our rights to the strong pain killers that are not denied to people with cancer and AIDS and MS or some other recognizable physiological illness.  Why should we be treated any differently?

Number One Son
He has not moved house.  He phoned and he had a bad case of verbal diarrhea complaining about everything but I could not understand what he meant except generally speaking things are not the way he wants them to be.  I do not know what his complaint about his house mates are but I think he feels left out.  He asked me how I was and luckily I said I was feeling better that day because he has taken it as a sign that he does not have to move out for at least a week.  It seems he is somehow concerned with my health and having to push me around in a wheel chair yet how this connects to him moving to another share house I have no idea.  He makes connections that none of us would make.  He also asked me if we can move to Melbourne again.

Number Two Son
He has been distant the past couple of weekends not going seeking out a chat online but I caught him online this morning very early and the story I have been told has been changed from "I barely think about her" to "I miss her."  Poor man.

Amberlin Wu by Dr Dolan

Today, one more spirit dances. She dances without her body. Others must live, and continue dancing together, ready to fight, ready to love. 

Dr Dolan reports:

Please, let me tell you a story.

Amberlin Wu was born a strong spirited child, ready for the world ahead of her. She had passions to become a leader, a lover, a healer, a dancer. So much inside of her. She, like so many, became ill at a very young age. She was diagnosed with Chronic Fatigue Syndrome. She was pushed around in the medical system, and the more that she needed help, the more battle scars she began collecting. You see, our modern medical system is full of too much ego, and not enough compassion. Amberlin’s illness was a mysterious one, and doctors brushed her off when they did not have the answers. Amberlin, like so many of us, once thought that doctors were there to help you through your process of illness. She believed that people became doctors because they were compassionate. 

Amberlin was so compassionate that she herself even attended medical school at one point. She was too ill to continue, so she danced. But then, she was too ill to continue dancing, so she began advocating. She fought for the rights of all people like her, with this mystery disease. But when she went to rally her medical troops, her battle field was nearly empty. ...Where were the doctors she grew up with? Where were those healthy allies she had devoted so much of her life to? She was pushed aside by so many people she trusted, and thus began her collection of battle scars. Ironically, she prepared for a war, ready to face the opposition on the other side of her; little did she know that her battle scars would come from her own side of the war. The sad thing is, when we become so ill that we need our friends and neighbors to carry us, we have a hard time fighting a fight. And without the support of the medical community, she faced a losing battle, against her own team. 

Still, she did not give up. She began finding little peaks of light in the corners of this dark battle field. She began finding other wounded fighters like her. She stretched her arms and extended her own light into the souls of these other fighters. The more that she shared her light, the stronger they became. In turn, these other wounded soldiers shared their own light. And a miraculous thing occurred. A light. 

A beautiful light.

Among the wreckage of this dim army, began to grow a seed of light, that grew to a garden of hope and strength. She was connected to them all, every last beautiful bloom, Amberlin was connected. She began to see an army forming. People began rising above their suffering and bringing their voices together as one harmonious chorus. “Louder. Louder. Sing your truth, louder!” the people cried.

An army arose, a beautiful brigade of invisible fighters. There were children, mothers, fathers, teachers, and yes, even some doctors. Together, they were strong, and Amberlin was on that very front line. The people beside her, the people behind her, the light all around her. “Share your stories, tell your truths!” she cried again. “Tell your truths!” The people began holding hands and marching forward. They shared their truths, and they shared their growing light with the world ahead of them. Amberlin, along with so many, now had a mission; a dangerous, scary, magnificent and valiant mission. One with hope now, and one with a real army. An army of survivors. 

Together they were strong! And together they remain strong. ...Amberlin grew too weak to continue fighting this war for health and compassion. She, like so many others, began her completion of this circle in life. Her own personal battle was fought, and she fought so damn hard. She was a true soldier, a warrior... a hero. My hero. Amberlin, my hero forever. 

Read More

Amberlin Wu by the rest of the M.E. community

Amberlin touched so many of those suffering from ME/CFS. As part of a large online community she reached people the world over by any means available. Even through her suffering, her bubbly personality shone bright. To have been touched by her is to have been blessed. In an unabashed manner, not often seen in the ME/CFS ill, Amberlin championed awareness through her advocacy, blogs, local support group, t-shirts, poetry, art, funny videos, as well as a very personal hospital stay online.

Read More

Amberlin Wu's blog

She and I were contributors to Art for M.E.

He bought a pair of reading glasses

He has 20-20 vision, did not need them for that.  I think he just wanted a pair and he went to an optometrist who was happy to oblige no doubt.  He says they are corrective and will make his eyes stronger and that one eye is different from the other.  He paid top dollar too.  Oh...and he also wants braces for his teeth to straighten them.  He has been saying that for a long time.

Also I led you astray saying it seemed like a house of students/study at Dalby St.  It seems the others have jobs.  One may be studying part-time.  I can't remember.

I'm having another bad day and I'm going back to bed now. I'm supposed to be posting his phone charger back.

And guess who is going to be paying for the tooth to be fixed until such time as he can.  It is getting fixed tomorrow.

S thinks this might work


I hereby absolve Scott and his teeth of all consequences stemming from the unfortunate circumstances of his parents that have lead to more unfortunate circumstances in his life. Signed his mother


He is a bit schizo right now and does not notice that part but he is still trying to work out why things keep going wrong. His tooth broke today and he has been pedantic about looking after them and does not understand what is going on. He thinks he will have to leave the house he is living in. He has been bugging me all morning to write something that will clear the past.


This is his version " I would like on any part the best for his healt in any reagin we have not been able to be correct or strong enough to have him in any proceeding misfortunes as best let bygones be by gones in the name of his mother Judith Glenda Peters Frizzell"

Make a digital signiture with word it is on the word "top left under prepare" button under prepare.

I would like on any part the best for his healt in any reagin we have not been able to be correct or strong enough to have him in any proceeding misfortunes as best let by gones be by gones and all blood be left un written in the name of his mother Judith Glenda Peters Frizzell

thank you mun love ya

9:56am

I Judith Glenda Frizzell would like to ensure that Scott's health is the best it can be despite any areas of life that I have not been able to correct in my life or strong enough to prevent from being carried on down the family line, letting bygones be bygones which in no way affect his future.

put in the blood bit they love that

stuff

we married in the a family of vampires I am sure

put in the blood bit

dont take it personally blood like blood money blood!

I Judith Glenda Frizzell would like to ensure that Scott's health is the best it can be despite any areas of life that I have not been able to correct in my life or strong enough to prevent from being carried on down the family line, letting bygones be bygones which in no way affect his future using my blood oath as surety.

perfect

10:00am

bingo

put oath in inverted commers

no blood in inverted commers and explanation mark after oath

see love ya

even two explanation marks would be good

or better

our Generation

post it a professionally as you can

10:06am

I Judith Glenda Frizzell would like to ensure that Scott's health is the best it can be despite any areas of life that I have not been able to correct in my life or strong enough to prevent from being carried on down the family line, letting bygones be bygones which in no way affect his future or the future of the following generation using my "blood" oath!! as surety.

He said thanks so he is now somewhat placated.

Catchup

Collingwood did not beat Geelong in the grand final yesterday.  I was a bit disappointed.  S did not stay to watch it with me.  He asked if he could stay overnight Friday night.  He caught the bus down.  Ate the things he wanted and then hit me up for a small loan Saturday.  If I had not have dawdled getting the money, I think he would have left sooner.  He phoned again this morning and told me he left his phone charger behind and then asked me if I had somewhere to stay for a week away from this house.  He would not explain the reason behind his question.  So I have no idea.  I feel really crook. Joints, aches and dim witted.  I was hoping to see B this weekend but now I don't really care.  Had bushfire smoke in the air again last night and it is blowing a gale today despite the lovely sun but I'll be happy enough to dope myself up and and resume life once this pain and zombie-like feeling lets me.  I know he came down this way for the weekend but where he stays and what he does is not for me to know. I did ask if he would call in to visit me. I only got a maybe.

A bit too big for this now May 2011

Speak of the devil - he has been and gone.  He came to borrow money till Wednesday (S said Tuesday).  I am getting in the habit of taking out more money than I need knowing that it will get put back in my account via the Internet (unless it doesn't).  While he was here, I gave him a couple of ashtrays and he told me that just because he loves Stacey does not mean he wants to be with her.  You will see what I mean when you read the excerpt below.  But I am afraid he caught me in the middle of crying.  Just started crying today for no reason and this time I cannot blame Jamie dying or the beta blockers because I have not had any.  I read that my beta blockers can cause inexplicable fatigue and depression you see.  And I hate the sound of the wind in the roof.  You can never completely relax.  I mean - what is that bang that just happened?

I am still glad I got to see my boys this weekend.  I got a couple of hugs and kisses.

Facebook news:

Nick Alderton

hey man i still got the same number call me its your missus that i have no time for not you and the boy, i think of yous all the time and riley would love to see cohen...p.s. give me ya number and i call you if ya like

 ·  · See Friendship · September 26 at 11:19am · Privacy:

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  Lakota Arundell likes this.
• • 
    

    Bl 
    

    Hey man don't really know what to say. the main reason i stopped talking to u was because of the things u said about Stacey & Cohen and i know u where probably angry but it was just way out of line, im not with stacey anymore but i still love her and probably always will. i just did what i thought was right for my family. Sorry to hear about u and tams must be hard for u and i don't mean this in a mean way but maybe u can now understand what i was going thought back when stacey and i first broke up . Anyways man HAPPY B-DAY i might catch up with u on the weekend im coming down.

    
    

    September 26 at 12:10pm ·