On Friday I turned 69 years of age. After 2 weeks of being very ill, I went to the Valla NA weekend which we have spent so many months planning. I was in a wheelchair for the weekend which felt very strange but worked. My Girl drove me down and with the Little Girls we had lunch in the Valla Cafe. Then they took me to the Venue and booked me into my cabin and the Kids swam and played in the Cabin. It was a weekend like the ones I first went to in early recovery. Simply Magic. Each thing fell into place. People played a part and Some very fine people were there. I shall not write much tonight because I am still very weary but it fulfilled every hope I had had for it.
I went to the doctor today. Dr N because Dr D is away. It was a very interesting visit. We spoke of aboriginality and many other things. My Girls dropped me there and Rosie picked me up. Today is Rosie’s Day. It is a part of the thread of my life now. It means my house is clean and all is well. Clara thinks that Rosie cleans the toilets so that ghosts dont come up out of the bowl and for some reason she has much the same effect on my week.
Big John called and Valla double booked the venue and so we have a free upgrade to the Wool Shed which is flash. Nic is down from the North and ready to shop. Things are on the move.
Tomorrow is my 69th birthday.
The Girls are taking me to Valla, my beloved Girls that is. Taking Miss 8 out of school early and then we will lunch at the cafe and they will drop me at the Venue for the weekend. I have a wheelchair which I am meant to use. I have a cabin booked which Nic is to share with me. She is cooking for the whole crowd.
We dont know how many people are coming but there are a good few. From Albury and Gold Coast and Byron and Armidale and more places. One of the rehabs is coming.
I was awake for the dawn this morning. I am feeling a good deal better especially with the antibiotics completed. They made me feel sick. I have eaten dinner tonight and didnt get nauseous at all.
I had a great talk about aboriginality with the Doc I saw today. And she said I was one of the Women about whom the logo BECAUSE OF HER WE CAN was written.
No I am definitely feeling better than I have been and now I face the daemons that I now spend my life with. The going away for a weekend. The Mixing with people. The weekend lies before me and people from all over are in touch with me through the Facebook Group. Big John and Helen are working hard as. And I remain in my own retreated wild world.
ONE STEP AT A TIME.
I might go to bed soon. Tomorrow is a big day for me.
Bed is next. I am doing the best I can here. Trying to nudge people along and be the comic which seems to be my role. I like being at home. I like the gentle lapping routine that has formed. I find the rest of the world very difficult. But I am going out. I am going away for 2 days. About 20 kms away. And it disconcerts me – but I am going.
WE went swimming at the Pool today. A baby was swimming . Crying and swimming and crying some more. Afraid and cold. I think her Folks were training her.
We went swimming at the Pool today. Miss 8 swam the length and dived and raced. Miss 8 came to Miss 5 and took her by the hands and they swam across the Pool. Miss 8 took Miss 5 on her back and walked in the deep water. She did not cry. She laughed.
Why in the name of God are we force feeding our babies into pre schools and early swimming and all manner of false learning.
LET THE BABIES BE BABIES.
Let the Grieving Grieve.
Another rainy day. Another day mostly in bed. But I did get up and get myself to the NA meeting. There were only 3 of us but nonetheless I fully enjoyed it. There has been much sickness in meetings and lots of personality issues. It has, therefore, been a delight to get to a meeting which was a meeting in the true sense of the word instead of a navel gazing splurge with a touch of malice and focus on other people’s faults.
Its put a small dint in my plan to do no more meetings. And one of the men is coming to Valla on the Big Weekend. The other will be in South America.
And I will be here. On the Committee if my nerves can handle it. Geez I am so trashed. So very trashed. I have a cabin booked and half paid for. Just proceed Luce. Just proceed. One day and then the next.
PURE NA RECOVERY
MY SHELVES AT HOME
So the night passes. Daylight Savings starts tomorrow. Not something that makes any sense to me at all. Then again – not the least point in being upset by it either. The night passes. My heater ceased functioning. I am in my own world of images and beauty and almost ready for bed. I read from my iPad now. My girls Miss 14 is braiding her hair on Facetime and I sit here. She laughs with her Dad.
I am doing much better now that I no longer think myself crazy. Or mortally mentally damaged. I am doing much better now that I have had a safe year ikn one residence without hospital stay.
I have been planning to try to go to Eden and Sydney – but I am beginning to think that staying past the boredom might be the wiser move. We will see. We will see.
Some people thrive on the seemingly daring and the rapid moves. I seem to thrive in a slowness with unseen progress.
Nothing is more negation than solitude and peace;
That is where, if at all, my soul shall find release.
A peaceful day once more. Facetime with Eden. Sleep in. Then a Visit to the Kids and an afternoon at home.
My leg seems to making it through without the cellulitis taking over. I cant remember how many week long stays I had in hospital in 2014 and 2015 and 2016. Maybe one last year as well.
THAT has left me feeling quite well today. Able to walk to the Kids and back. Able to drive around town and shop at the Prov. My breathing is OK and my feet are itchy but not painful. I am going to hunt up some more Sepsis Snippets – once again looking at the similarities and not the differences. Now Eden has gone to bed. They went on a fishing safari today up over the rocks at Boydtown. Didnt catch anything but that doesnt matter. Its not the point of fishing.
My Little Girls were doing their gymnastics which is their current obsession. Twisting and turning and laughing and shrieking.
A day might come again when someone says to me ; ” I like that. Can I have it ? ” Then I will know that things are truly getting good.
And a day might come when someone says ” Come and stay with us, Nana ?”
Then things will really be getting good.
A day might come when I see a guitar in someone’s hands and a canned golf course in the backyard.
How good would things be then ?
The thing is – THINGS ARE THAT GOOD RIGHT NOW. Unseen perhaps but they are there.
Years back Arkue said to me about my son
” How would it look if you knew that he really loved you ? “
Things then looked just fine. And things now are just fine. Merely buried like seeds and growing unseen as yet.
Living, there is not happiness in that. Living: carrying one’s painful self through the world. But being, being is happiness. Being: becoming a fountain, a vessel of stone on which the universe falls like warm rain.
Milan Kundera, Immortality
THE SEPSIS SNIPPETS FROM ALL AROUND THE WORLD
Check the Facebook Groups and Pages.
SUSIE : The most surreal feeling I’ve ever felt as if i did die and i feel like im captive in my own body and no one understands unless you lived it
ISA : Does anyone else feel very lonely after this whole ordeal? In a few months it’ll be six years for me, and I just feel so lonely. No one in my real life understands, I don’t have good friends or a boyfriend/husband, job, etc. My life stopped when I got sick, and hasn’t really started again (kind of, but not really). In a few hours, friends are coming over and I’ll pretend like everything is fine. Can anyone relate?
Trish : Im 5 years . It seems like it was yesterday. Still remember the fear, the pain, the confusion when I woke up 4 weeks later. Im a different person. I can remember all of the above yet I can’t remember what I had for breakfast yesterday. Its a battle that we just need to keep on fighting. On the outside family and friends see the facade but on the inside we are crumbling.
Craig : I’ve just noticed not only have lost hair growth from my legs, but I’m also losing hair from arms. Has anyone else experienced this and did it progress to head hair loss?
Grace speaking to another Survivor : Feel the sadness through your words. Times I was so despondent too I felt it was no way to live, yet couldn’t make anything better. Only in time some things I never expected got a little better. Nice moments slipped in my days I never expected. My friend said, You think it will continue being this bad, but it’ll change, get better. It did. Hope this is so for you.
Today was our Committee Meeting for the October weekend at Villa. I am still very unwell but Maybe took me down and they went to the beach while I was in the meeting. I was not very useful but I was impressed by the rest of the Committee. We just might pull this off.
Catering is organised and much of the Music. It could be good.
The Kids and me, we went for lunch at the Villa Cafe which is great food.
I am going to put some of the snippets from Facebook about Sepsis up because that is what is dominating my days at the moment. Even more than my Kids or the Weekend. I am very swollen with fluid. My hands are clawing. I can barely eat from the pressure of fluid. I am weak and struggling to even walk. And I am sinking into a depressed state.
It could be the Hep C. It could be many things. But the Sepsis is the one that matches the symptoms for me. Well – PSS rather than Sepsis. I am not flogging myself tonight and am beginning to lighten up o myself once more.
NOTHING TO PROVE TO ANYONE.
But I would like to breathe and move easily again.
I was just looking at a ;picture of a Peach that I was given for my 66th birthday at the Beachshack. I remember looking at it and realising that I had thought I would never again taste PEACH. I actually didn’t taste much of that one either because the Little Girl had never had one and seized it and was in Paradise. Much of my life is like that Peach. Suddenly I realise how many things I have put in the ” I will never again experience that” basket.
Like having a helpmeet and moving easily and all manner of things. Having a good car again and a boat. All manner of things.
So I sit here at night knowing that my emotions are dying. I can look at things and people I know I love and feel very little. I am so focussed on just surviving. And then as the night goes on I seem more able to breathe and I relax somewhat. Things seem safer and easier – late at night.
SNIPPETS FROM FACEBOOK.
Post Sepsis Syndrome -PSS Support
How do you get diagnosed for PSS? I have all the symptoms from the page on sepsis trust, I had sepsis in December 2017 through pneumonia, since then I have been constantly ill, I’m only 27 and supposedly should be recovering quick and well according to my doctor, I haven’t had any professional help, support or after care. I have severe depression and anxiety. I don’t think my doctor knows what PSS is, how will I know if that is what I’m going through if the doctor doesn’t know? Has anyone got a diagnosis and how did you get that? Thanks for your replies in advance, any advice is appreciated
From full independence to bedbound, needing daily assistance. Thanks Sepsis.
People just don’t understand the aftermath, sepsis is life changing.
It changed me and I don’t recognize myself. I miss being me.
Fighting for your life, struggling to heal. It is a battle that creates warriors.
A paler more fragile shell of former self physically leaves you mentally fogged with only a ghost of your mind intact. pschycically with one part of you here ,another part of your spirit at the door of ethereal shadows .
Septic .,… I never knew was that meant until it attack me., I live my life wondering where it is now. On July 31, 2018 I was admitted to the hospital for 9 days I had my gallbladder removed. I fear that it’s around me but I can’t see it I can only feel it. The worst pain of my life. According to me I felt as if I was dying nobody explained anything to me. I was so scared I made a (Will) on my phone I emailed it to several people. I live my life so different then others. This sepsis monster has changed my life forever. I can’t sleep and if I sleep it’s a few hours, someone mentioned it’s from the antibiotics but does matter anymore it has taken my life but not my heart .!
I struggle each day but all I can do is just take it one day at a time.
Sepsis didn’t quite kill me, but it took a part of me with it.
Friday is becoming our Basic Text Study Meeting Day. Not that we often get around to open ing the Basic Text. We yaan. Today was also Cath’s 3rd birthday so we had cake and card and she went down the Prov and got lunch. Then she got a call from the school and needed to go off. So 2 of us sat and yaaned some more and then D.C. came and we all talked for a long time outside at my table on the Verandah.
I would not say that its my favourite thing to do. Pretty much I only want to be left alone or with the Little Girls but I know that this is what we do to stay clean.
3 primary elements of recovery :
ARROGANCE IMPATIENCE ISOLATION.
So arrogance would have me think I don’t need to mix with other addicts. And Isolation seduces me.
Today is a Rosie Day. She comes for 2 hours and I am to decide what we do. Mostly she cleans for me. She has also put in a garden. This week we decided to go to Coffs and pick up the vaccuum cleaner that Community Care Options ordered for me. So we did that . At the Good Guys. Last week I was wondering whether I were feigning illness over depression. This week when I am less unwell, I very clearly know the difference. I went for a blood test first thing. It went fine but for one thing. As I left the building, the blood spurted bigtime. Platelet drop by the look of it.
Then I came home to wait for Rosie. In the letter box was a purple long sleeved top I had ordered online. Very nice it.
Anyways in the Good Guys in Coffs, I came upon the computers and regretted going with MacMan’s rebuild plan. They had some damned fine computers for $1500. The lad working there was an expert and we had some good conversation. I was tempted. In there amongst the glitter and fancy goods. I could have bought one right there and been done with all this fiddling about. But I didn’t
We went into Sawtell and I sent my old phone off to Jaybee in Eden. I know the ower of the Sawtell PO Knew her way back in Sydney in the 90s. We chatted and she told me that her mother’s family are Eden people.
WE ate at Hearthfire. A tart called pumpin, chevre, mushrooms and pear. Rather special. I bought a Zinger drink. First taste I knew it was alcoholic and I did not drink it at all. That’s an improvement. Lately I would simply not have cared but today I was back where I have always been – ALCOHOL IS POISON TO ME. And I simply pushed the full bottle away and drank water.
So we came on home and Rosie unpacked the vaccuum cleaner. She is the one who is thrilled about it. Did half the floor and a plastic piece fell off and could not be put back on.
I am taking it as symbolic. I swear, when it comes to new and unnecessary – they always muck up on me. ALWAYS. Rosie had to take it back to get another. Could take weeks.
I figure the computer that looked so good might well be the same. The bright shiny and neew always looks appealing but that doesn’t mean it is the best choice.
Anyways – anyways – I am keeping my hands off things. Whatever has happened to me – I work within those boundaries because I simply freak when I don’t.
I use words less than I once did. I like pictures. I like photographs. Words rarely meet my needs anymore.
I post a lot of pictures of myself. I am lost to myself at times and I spend a good bit of time looking at the images. Wondering who I am now. I gather bits of myself together . Then I look at them. In 1987 when I got clean and sober, I looked in a mirror in the detox unit of Callan Park and I did not know the woman in that mirror. Then when I passed through the horrid women’s rehab called Detour and was accepted into the Langton Centre, they photographed us and when I was shown the picture, I could not tell which one was me.
It has been a little like that since Iz died and moreso since the Coma. I wonder how often I can be torn arpart and reassembled.
And I wonder too when I will stop asking too much of myself. Might not look too much to others. I don’t know. But I am too often stretched internally . Far from the healthy meetings of earlier recovery.
PERFECTIONISM. Ah well. Life is not bad for me. So long as I keep fine tuning my own attitudes. So long as I delight in simple things. So long as I remain commitment free and stay patient in the things which I think I ” need to do something about. “
I opted out of everything today. The AA Rally. The NA Are Meeting. I slept till Noon. Then a text came asking whether the girls could come and visit.
Down they came in the rain. The first rain we have had for months and months. Umbrellas and Raincoats. We then had one of the best afternoons I have had. The busking amp and computers here and then to the Prov for lunch. Me doing the driving with a booster seat I bought for Clara. We explored the whole town and went to the park at the Pool. The girls even conned me into using some of the adult equipment there.
It was happy day for me.
First day where I have been able and allowed to drive them around and take them out.
Macman has my computer underway.
I seriously MUST go on the instinct for happiness or I freak out and lose the plot. Enough for now. Bed for me.