Category Archives: RECOVERY

HEATWAVE CONTINUES

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CHILLING OUT

I have just been chilling out inside the Lyon’s Den with the heat blazing outside. IT IS ALMIGHTY HOT.  Today was rather odd. Just silent nothingness – again.I had the very lovely social worker here – basically to tell me that there is nothing she can offer me. The girls enjoyed school again so that’s good but my life is lonesome and odd. Plain odd.

This is vaguely my vague planning at the moment.

1.Have the endoscopy and varices ties.

2. Get the ultrasounds of abdomen.

3. THEN – go South for a couple of weeks.

PLAN NOTHING ELSE.  Let the next stage work itself out.

( I tell you one thing – I don’t actually like living here. )

I really need some kind of miraculous intervention.

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2013 at the Poteroo Palace out of Eden NSW

My man, Izzy, went running in the forest near our home June 21 2014 and never came home. He had a massive heat attack and found dead beside the road. In September 2014, still completely shattered and shocked, I began to feel tired and not real well but not enough to worry. I had pre existing conditions and the grief. Then one day, I started to feel worse. At midnight I began to bleed from the mouth and as I have a bleeding disorder and had promised my Doc that if I bled for 30 minutes I would call an ambulance – which I did. Next thing I am in the Regional Hospital In Coffs Harbour. This is a vague time but I was told I would be intubated because I had 12 1/2 minutes of life left. i refused till I could speak to my 2 children and my brother who was a CNC Nurse at RPA in Sydney. I recall very little from that point until weeks later when I woke from the coma. Unable to move , eat etc. Wasted and cathetered – all those things. ICU was very good but I went from there to medical and then was sent to Bellingen for rehab.It was the beginning of October by then and I was still unable to walk or sit or hold spoons etc. Instead of rehab they put me in an old persons ward with dementia patients. It was a nightmare. I knew my muscles were wasting and I was starving.My Doc sent me home alone then to our farm. Luckily my son was there ( he lives 1000km south) and my daughter but none of us really realised what was happening or had happened. It has been a very long 2 1/2 tears of piecing all the bits and pieces together. I have had 15 emergency hospital admissions since then. My hair fell out . I suffered terrible muscular pain and spasms and paralysis at times until acupuncture and then a lymphatic masseuse from Germany (on holidays) eased them. I have suffered so many of the symptoms I have read of in the Sepsis forums but been told by Medical People that they were all separate issues. Despair has been a frequent companion and fear. The physical weakness has been shattering as has the muddled thinking at times and vision.
The last month has felt a good deal better but life bears no resemblance to pre sepsis and nor do I.

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S-E-P-S-I-S

Now the word sepsis has seeped its way into my vocabulary. I now try, where possible, to inform anyone about the condition. Here are some of the key symptoms of sepsis:

Slurred speech or confusion

Extreme shivering or muscle pain

Passing no urine (in a day)

Severe breathlessness

It feels like you’re going to die

Skin mottled or discolored

A key problem with sepsis is detection. Most symptoms can be attributed to less severe illnesses, like the flu, gastroenteritis, and chest infections, and so often go undetected.

In Kirsty’s circumstances, the symptoms were extremely hard to discern from the post-operative healing and what she typically experienced with her chronic condition on a day-to-day basis. But do… REALLY DO look out for all sepsis-typical symptoms. Please let others know if you do not urinate, or if you feel extremely unwell: ‘like you might die’. I hope that as more people know about sepsis, they will be become more attuned for what to look out for.

Bill Wilson’s now famous “ILLUSORY PEDESTAL’ 10th STEP Perfect example of the spirit of our 10th Step by Bill W in his reply to a 1960 letter mailed to him from a Group in Chicago taking his inventory (Bill was 26 years sober) | 12stepstoanewlife

“That you seemed disillusioned with me personally may be a new and painful experience for you but many members have had that experience with me. Most of their pain has been caused not only by my several shortcomings but by their own insistence on placing me, a drunk, trying to get along with other folks, upon a completely illusory pedestal; a station which no fallible person could possibly occupy. I’m sure that you will understand that I have never held myself out to anybody as either a saint or a superman. I have repeatedly and truthfully said that A.A. is full of people who have made more spiritual progress than I ever, or can make. That in some areas of living I have made some decided gains but in others I seem to have stood still. And in still other ways I may have gone backwards. I am sorry that you are disillusioned with me but I am happy that even I have found a life here.

Source: Bill Wilson’s now famous “ILLUSORY PEDESTAL’ 10th STEP Perfect example of the spirit of our 10th Step by Bill W in his reply to a 1960 letter mailed to him from a Group in Chicago taking his inventory (Bill was 26 years sober) | 12stepstoanewlife

ARCHIE ROACH – WE ARE LEFT BEHIND

Nobody Owns the Notes

Jeff McMullen 2013

The secret beating heart of Archie Roach’s music is the connection to his country and people. On the Gunditjmara lands in south-west Victoria, near a peaceful place Aboriginal people call Tarerer (Tower Hill) where eagles soar and the sugar gliders, black swans, kangaroos and emus wander the wetlands around a dormant volcano, the songman finds the spirit of place he has searched for most of his life.Archie’s voice, with a tremor like broken moonlight, washes in across the southern ocean. Along this gentle shore at Killarney there is a midden in the sand dunes scattered with shells and bones, little bits of a story that is older than anyone truly knows. This is Archie’s mother’s country. She was from the Djab Wurrung clan of the Gunditjmara but was born on the Framlingham Aboriginal mission after her people were pushed from their lands. His dad was a Bundjalung man from the Clarence River in northern New South Wales.

Source: Stolen Generations Singer Australia, Stolen Generations Music Artist

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Writing posts hasn’t come easily as you know. Not of late. Today I came across the ARCHIE ROACH music and my mind went back to when I heard that his Ruby had died. I saw something die in his eyes as well and then he had a stroke – seems like we almost go ahead with our Beloveds. But he came back and re-created himself and is making fine new music and doing fine new things. He will be up here in my area for freshwater saltwater .

My heart still beats. I have had 2 years of the excruciating pain of losing Izzy and then of grave illnesses.  Today I took no medication and I had a very ordinary day – almost a normal day. A mixture. I rode the pony clear to Town. If I can normalise that, I shall add new dimensions to my days. I just want to collapse into being taken care of but that doesn’t seem to work very well so I am out there stretching my spiritual and emotional and physical being.

I haven’t taken medicine for 2 days and feel much better. I know I might well need it again but days when I don’t – then I won’t.

pony
THE PONY

We shopped in the morning and then in the afternoon, I took the Pony Ride – clear up around the Council Chambers and along the Main Street and back across the Showground and home.  I am not, as yet, specially AT HOME here. Then again I have experienced that before as I did in South Coogee ( 1988-1994 ) I didn’t feel at home there but it became one of our most loved and stable homes. Its been an enjoyable day. I even had a real breakfast and lived quite normal hours without the need for pain killers or fluid tablets.

Its bedtime now and I shall give that a go.

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TODAY AND MY TOWN.

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WHEN WE WERE BOTH ALIVE

Recognize sepsis as a separate cause of illness and death | EurekAlert! Science News

Sepsis should be recognized as a separate cause of illness and death around the world. This focus would help efforts to prevent sepsis by improving hygiene, nutrition and vaccination rates and also lead to timely treatment, better outcomes and quality of life for people with sepsis, argue researchers in a commentary http://www.cmaj.ca/site/press/cmaj.160798.pdf in CMAJ (Canadian Medical Association Journal).

Source: Recognize sepsis as a separate cause of illness and death | EurekAlert! Science News

Strategies for Improving Memory After Brain Injury

The brain can’t store information in its memory efficiently when it’s tired or stressed. So when you’re too tired to focus your attention, your memory is likely to suffer as well. As your brain heals, you may have more energy and be able to pay attention for longer amounts of time. This, in turn, will help your memory. But, you can also use other strategies to help you remember. Here are some ideas:Reduce stress and stay well rested. Take breaks when you need them.Know your limits. When you feel you can’t absorb any more information, take a break or have someone else write it down for you.Consider using a cell phone or PDA (personal digital assistant) to send yourself reminders, remember directions, or keep appointments.Work with a professional (such as a speech-language pathologist) to learn to organize information so it’s easier to remember.Carry a calendar or notebook to keep important information in one place.

Source: Strategies for Improving Memory After Brain Injury

THE RED SHOES

A DIFFERENT DISEASE BUT YET ANOTHER CASE OF BEING TREATED AND THEN SENT OUT INTO THE WORLD WITHOUT SUPPORT. THANK GOD FOR THE ONLINE COMMUNITIES. I CAME OUT OF YESTERDAY FEELING  “EMPOWERED” BECAUSE I HAVE REFUSED TO SIMPLY DO AS I WAS TOLD, OR AGREE WITH WHAT THE MEDICOS TOLD ME WHEN I DIDN’T AGREE AT ALL.  MANY OF THE ISSUES I HAVE ARGUED WHINGED AND ALIENATED PEOPLE OVER – HAVE PROVEN TO BE  TRUE. BRAVO TO ALL OF US.

From Sole to SoulWhen I was diagnosed with thyroid cancer in January 2015, my life changed.  This might seem an obvious statement, but it did not change in the ways you might expect.  Or at least, not only in the ways you might expect.There were tears, fear and grief.  A reshuffling of priorities.  Scheduling of surgeries and biopsies and medications and scans and blood tests.  So many bloody blood tests.But there was also a strength that emerged and continues to surge through me, like nothing I’ve ever felt before.  There’s a strange sense of relief.  Scintillating clarity.  Lots of hugs, and “I love yous”.  Precious nurturing.  Above all, a re-connection to spirituality, my relationship with which had become faint and trivialised in my life.  A sense that I truly am being taken care of, both physically and within a bigger picture.  And a red-hot feistiness that insists it’s not my time to go yet, with still far too much to do, see, achieve and experience on this planet.In short, I’ve become more myself this year than I have ever been.  I know who I am, what I need and what I want for myself, my health and my life.The strength and positivity I’ve found through this journey have not come about through band-aid like optimism. They’ve appeared when I’m honest, real and learning to move through life, day by day, with a focus on what works, what helps and what I need.In creating this blog, I want to share the journey with you.  Not just the journey of the challenges and practicalities of dealing with cancer (of which there was startlingly little information available), but also the gifts, strengths and inner resources this experience is revealing to me.  I want to share stories of recovery, insights, what worked, what didn’t and how we can make this journey a little less lonely for us all.

Source: THE RED SHOES

Life After Brain Injury — Watching Out for Rogue Waves

Feeling the weight of it all, this past week I Googled “brain injury and suicide.” No, I have no intention of cashing in my chips. Rather, I was more than a bit curious about how many others died from traumatic brain injury long after the initial injury. The numbers were staggering.

My new life these days is defined by living close to complete transparency. I share more than most ever will, knowing that my own complete disclosure will help others to feel less alone and less isolated. As my wife Sarah has shared since life forever changed in November of 2010, “the curse will become a blessing.”The process of evolving from one person to another almost completely different person is often hard to describe to those who have not lived it. But it is a process. There will be good days, and there will be tough days. On the tough days, it helps to remind myself that I have a 100% track record of success in making it through the tougher days.

Source: Life After Brain Injury — Watching Out for Rogue Waves