Category Archives: AFTER THE DREAMING

LIVING LITTLE

BEACHSHACK FRAN

There are times when I feel the edges of regathered grounds then I mudslip back into the ooze. Nonetheless – now and then I stand on the edges of them with my toes squirming in the mud for a hold. The places I had reached before Izzy died and before I became ill.

I cancelled all appointments today and slept most of the day. I do quite well then.

The thing I c an feel the edge of today is KINDNESS. I have been angry and afraid for a year and only seeing the worst in people and situations but today, for a little, I could feel ground that I once stood on where I thought of people more gently and more kindly.

THE PHYSIOTHERAPIST

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The next step has been taken. THE PHYSIOTHERAPIST. I could have done with one straight after the Coma. Poor Service indeed. And then I could have done with one once I came home. Shame on you all ! Now for $25 , I saw Deena today and she understood a lot of what was wrong. I have some exercises to begin and then I see her again next week. Ridiculous that the sick person has to formulate their own recovery programme.

No matter, I am doing it. Its Springtime now. I missed last Spring, I was asleep in the Dreaming in ICU in Coffs Harbour Hospital. This year I smell all the flowers and enjoy the gentle weather. I went with the Girls to Bellingen Greengrocer and I did the Yellow Shed. One thing each day, Lynne. You have pushed too hard again. My voice is gone and I have pain as well as the now discernible Grief. Up until now the Grief and Illness have been so closely entwined that I could not separate them. Over the last 2 weeks, ever so patiently I begin to untangle the silken threads that have had me cocooned for over  a year.

DO NOT PANIC. DO NOT PANIC.

Acknowledge the ONE THING today. I went to the Physiotherapist. Done and dusted.

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AND STILL THE TEARS COME.

THE BIGGEST CHANGE THIS WEEK.

I CRY AGAIN.

LOST & FOUND: WHAT COMA SURVIVORS WANT YOU TO KNOW. NO. 3 .IT TAKES A LONG TIME

Rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

http://healthcaresolutionsplus.org/lost-found-what-brain-injury-survivors-want-you-to-know/

lynne [rofbw

I don’t even know what to say about this. I don’t think I have a concept of “in God’s good time”. In the last week, I have begun to feel another layer of relaxing and accepting. Slow it down Lynne and don’t aim for old Baselines. Don’t aim for anything. The Blog I am getting this great list from – speaks of what we would like you to know about us.

I know that I look OK. Not as I would like. I am gnarly and creased and crinkled. Greatly overweight with hair like a sheep – but I look OK.

But I am not what nor who I was before all this. Never will be again. I shall be something built from the shards of HER but I shall not be the same.

I think the complete lack of formal rehabilitation SUX. I shall simply take to my kayak and go on as I am. But I do believe it has delayed things. Then again, maybe they would have twisted me all out of shape.

One thing I need to do is make NO commitments AT ALL. I cannot guarantee fulfilling them So DON’T MAKE THEM.

Just when you look at me, know that not everything inside my head is working properly and very little of it is working as it did.

When you look at me, know that I am trying but you drift in and out of focus mentally. I don’t mean to hurt your feelings but I may do so. And for that, I am sorry.

As I have written before, its a very odd feeling. Nothing seems to be the same. Not my sleeping or my taste in food or books or TV. Or anything.  Its like what I imagine a giant jetlag would be like. Wrap that takeaway meal in layers of grief and top it off with a house move. Then dip it in the grease of a terminal illness and I am schmuddled.

IT TAKES A LONG TIME

Lost & Found: What Coma Survivors Want You to Know. No. 2.

lynne sbbw

My stamina fluctuates, even though I may look good or “all better” on the outside.

Cognition is a fragile function for a survivor.

Some days are better than others.

Pushing too hard usually leads to setbacks, sometimes to illness.

Today I was able to paddle way up Hungry Head Creek. Then go on to Bellingen. I also emptied the fridge and freezer and defrosted them. The stamina was working.I was able to lift and carry Clara. What it does mean is that tomorrow I rest lest I become ill again. I have been through this one many times. Paul N thinks it is the bleeding and something else which I forget. He said he thinks I need the herbs he mixes up and which are more targetted than what he gave me last. He thinks the vagueness could be lack of blood. These are for the pain as well.

Today was good day.

LOST AND FOUND WHAT COMA SURVIVORS WANT YOU TO KNW : RESTING UP

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

LYNNE RAL

I already needed a lot of rest. With low platelets and Hep C . Now I am very very weary and weak. I take days in bed and I REST. My mind worked well yesterday and I was able to do things and handle reasoning but today I am worn out. I shall return to bed. Read a little – dream a little. I have things which seem to need to be done today. They can wait till after I wake up and if needs be till the morning.

I woke confused. Thinking that it was Friday and that I had things to do and was too weary to do them. As I gradually woke, and realised that it was Thursday and late afternoon and all was well.

I did what I could towards cancelling the cataract surgery on Monday.  I simply know that it is one thing too many for me at this time.

So I cook dinner which I was unable to do till the last couple of weeks other than microwave a frozen dinner. There were months and months when even to walk to the kitchen was harrowing and when I would get out of the car with one or two small bags and weep – unable to walk from the car to the house and up the one step.

Most days now are a little better than that and some are VERY good indeed. Yesterday was. Today , I already planned a full home day to REST. If I don’t rest enough, depression kicks in. Despair even.

Last week when I was in the Post Office and tapping in the pin to the Eftpos,I realised that for months I found that a tremendous exertion and would sometimes ask the girls to press the keys for me. I didn’t really realise that I must have looked OK when in fact I lacked strength even to press those keys.

I am fortunate in that I have lived through Recoveries from OTHER things such as Addiction, Divorce, etc and have 28 years of processes that have made this rather more comprehensible than it would otherwise have been.

AND THEN I REST.

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Awake till after Midnight because the memories come.

Awake till after Midnight because everything about me has changed. IN some simple and hidden ways.

When I want to lift my right arm, I must direct it with my thoughts to do so.

When I want to walk, sometimes, I must direct my left foot to lift and move.

And After Midnight, the Thinking comes.

And then I cannot rest.

The Coming of Acceptance is long and slow this time. As always, I guess because its Unknown Ground and I have no Guide. Mind you – its not so bad. I am rarely a Mess at Night – Just awake and sometimes jabbed with sharp thoughts .

Thoughts of how much I enjoyed having and being a Lover.

Thoughts of the Music World we lived in.

Thoughts of the travel plans we had.

And I so miss the Man who carried out my cascading ideas. We were a very good team.

COMA SURVIVOR, GRIEF STRICKEN WIDDER WOMAN, TRAUMATISED HOUSE MOVER AND RECOVERING ADDICT

DSCF2204I grabbed these points from the Blog Below. They come closest so far to how I feel this year and although I don’t know whether or not my brain was injured by the Coma, it certainly was re-arranged. Chuck in the well known grief and the recently identified trauma and my life is like it says below. I have taken the key points and modified them to fit the way my own life has been affected. Adding colour to it , is the Liver disease and living with a life threatening disease every day. It muddles me up. Add to that, the handling of my business affairs by myself with a mixed up brain and body and the words below are the best I have yet read to tell YOU what it is like for ME.

THE POINTS COME FROM HEALTH SOLUTIONS.  I have added some expansions of my own but I didn’t need to add much because the blogger  says it so well.  The Italics are from the Blog and the normal font is mine.

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

I already needed a lot of rest. Platelets and Hep c, I guess although for over a decade I was told it was enlarged heart as well. Now I need vast amounts of REST. I am so weary.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

People have thought and do think that I am now well. And they seem to think that encouraging me to greater achievements and more activities would be good for me – but it sets me back when I do it and I usually become ill with it. Some days I am clear headed and other days I am shimmering and fuzzy.

Rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I KNOW I am not who I was. Like Sharon Stone I feel as if my entire DNA has been altered. It is not yet one year and there has been minimal guidance through it.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioural problem.

Totally. The smallest situations can confuse me on a certain kind of day. Driving is only safe some days. Even meetings or telephone exchanges can disturb me deeply.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behaviour problem arises. “Behaviour problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I had not been through something similar in 1987 when I got clean I would have found this last year extraordinarily difficult because back then I received superb treatment and back up. Not this tie. This time has been abandonment and doing it without formal assistance.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

I AM DOING THE BEST I CAN !

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

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Lost & Found: What Brain Injury Survivors Want You to Know | Health care solutions plus

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

via Lost & Found: What Brain Injury Survivors Want You to Know | Health care solutions plus.

via Lost & Found: What Brain Injury Survivors Want You to Know | Health care solutions plus.

THE SEEMINGLY UNBEARABLE

The day has almost passed. I have done it all. All the right things. The Meeting. The Phone talks. The Eating. The Garden. I have done the day’s doings. And now its time for the seemingly unbearable.  Now the night is late and the sleepiness hasn’t come so the thinking does.

I don’t know how to bear the siren singe of the morning he ran away. The police car in the driveway and standing beside him as he lay in the dirt beside his road in the forest.

I don’t know how to bear the waking, paralysed with no idea that I had been asleep for weeks. Tubes coming out all over me and the cold jug of water on the table opposite and my terrible thirst for some cold water.

How I dread the days now when people ask things of me. Ask me to walk around and converse and drive and cook and clean and go to the toilet and shower.

Because when I stop – the thinking comes. The shock returns. I am alone and there is noone at all to help me. I will never be as I was before this. Part of me has gone ahead.

I still see the Young woman driving off with all the music gear and the van. I gave her his ashes and his hat and a doonah. I didn’t know what else to do.

My liver is hard and big and hurts me and I am ill. Ill and heartbroken. I have not as yet made my decision about whether I continue or not. I am afraid of ceasing and I am weary of proceeding.

Weary of pushing back the memories of the agonising days and the weakness. Weary of the memories of trying to lift my finger. To stand. To lift an arm to wash my hair or brush it.

Sometimes the Horror comes upon me of the days when the pain and paralysis began and grew and grew until the smallest of movements meant suffering and immobility. And now I am here and confined and listening to the spider whispers of thinking.

Tomorrow – I shall most likely reprogramme and shape my thoughts. I will be able to dig out the crystals buried in the dirt. That’s what happened today. The little girls had taken one of Izzy’s good crystals and buried it in the dirt a couple of weeks back. They said it was for a Dwarf’s mine and sure enough, when the Gentle Men began to garden they came across it.

I will be able to do that tomorrow – most likely. I can already see some shinings. But tonight – it seems almost Unbearable. 

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BLACK TUESDAY

THE DESCENT CONTINUES

into a black abyss

I would like to cry and cry.

I am beaten.

I wonder whether I will make it through this time.

I don’t know.

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Its cold tonight. I have my good heater and plenty of gas but it is indeed a cold night. I think that I need to make a major change in my lifestyle but I need also to be thoughtful in doing that and not harm anyone else. Maybe – not even hurt them. If I didn’t have other loved ones, I would leave right now. Go South. But I have Loved Ones in two places plus a need for more meetings. I did AA tonight and it made a substantial difference. So – if I proceed in a sober way and trust the things that have worked for me for many years, it will be interesting to see what happens.

I need to recall a few cliches such as FEELINGS AREN’T FACTS.

I need to draw myself back into the 24 hour bundling and someplace find some enthusiasm and faith. If NA meetings continue to cause me to feel negative – skid them for the moment and step up NA.

I shall also make a compulsory Gratitude List regardless of how I feel. Or else – I shall simply go down.

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But tonight – I am in descent. 

Heartbroken.

Lost. 

Somehow on the solid and accepted foundation of not taking respite in drugs of any kind nor alcohol, I am to continue through this. Not one night off. Not one day off.

Somehow on that foundation, I find ways to make it through the nest bramble patch. The next day. It means being alert and vigilant. It means doing things I do not want to do and might not even have faith in  anymore. It means proceeding with curiosity.

LETS SEE WHAT HAPPENS if I don’t pick up.

So today is close to done. I am alive, drug and alcohol free again. The Spirit is savaged and fierce and rampant. The Liver is like a tennis ball on  my side and the Rage is on Fire.

And – you know what – it don’t matter at all. It just don’t matter.

The Rally I like is on 14-15 August at Sawtell. I just might book a cabin there this time. Take the laptop or set up with an iPad. I have Modems for wireless broadband.

Just do that Lynne. Leave all major plans alone for now.

Tomorrow – Facial. And Acupuncture and Chinese Herbs.

This Thursday – Saf’s open day at School.

7 August – eye specialist.

12 August – 28 years clean.

14-15 August Sawtell Rally.

31 August – cataract removal.

That’s enough for now. See how everything else evolves.

I won tickets to the Bellingen Movies. I win a lot because I promote a lot on Facebook.

AT Least I am nearing bedtime and my Louis Maistro books about New Orleans , feeling less like a total failure at all of my life. One thing about being clean and sober is that the simple fact of NOT HAVING A DRINK OR DRUG TODAY makes me a success. Get that straight, Girl. Get that straight. You may think you have trashed your life and the Lives of those you love – but sweet Lord Almighty – if you had picked up in the last 28 years you would REALLY have messed it all up.

Clean tonight – cela suffice. 

MAYBE I should tell you how many RESENTMENTS I have at this time. There’s a lot.

I resent :

looking so crook at this stage of recovery when Joe Walsh and a heap of others just rock with health and wellbeing.

the man on the island for his birthday

the being alone again

the physical illness

the seeming impending poverty

the minimal quantity of meetings

the dent in Alfie

not sleeping well

being rock bored and lonesome

THAT’S JUST THE START.

EYE DOCTOR AND BAG PACKING

I am unwell – substantially unwell. Its making this week tricky . I do travel trickily any old ways. But a good dose of flu isn’t helping. I am such a delicate wee blossom. I want to be in Jim’s place getting looked after. A bit.

I did eye specialist today and I am to go for 2nd appointment tomorrow. Actually, I feel OK inside with doors and windows closed tonight. Maybe its allergies or hay fever – never had that stuff before. Not till said Coma.

I had a hot dog and doughnut today as well . That doesn’t sound much but after 8 years its a treat. Then I came home and proceeded with the packing. Its cold down there but the luggage limit is 15kg. I am endeavouring to get my head in order. If I wish to travel more, it needs to become something I do with ease. First go is not easy.

IF A THING IS WORTH DOING ITS WORTH DOING BADLY AT FIRST.