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.

Don’t leave it too late with sepsis, warn medics (From Swindon Advertiser)

GREAT Western Hospital has urged people to be vigilant to the signs of sepsis, after health experts warned patients to go straight to hospital if they think they have the deadly condition.After GPs cautioned patients with colds and coughs to stay away from surgeries last week, a winter health warning has been issued to remind people to be aware of the signs of one of the UK’s biggest killers.Health experts have now told patients with suspected sepsis not to write off the symptoms as a bad cold or flu bug, but to go hospital immediately if they suspect they have the infection.

Source: Don’t leave it too late with sepsis, warn medics (From Swindon Advertiser)

THE WIZARD | IZZY FOREAL

And it makes me think what I should have realised before hearing this today: that he appeared in my life as some kind of sage, or wizard – a Gandalf or Merlin – grey-bearded, wise to the world, stepping out from the edge of a grey forest at a crossroads, and, smiling, nudging me gently towards my true way.

Source: THE WIZARD | IZZY FOREAL

CONSIDERING THINGS

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OCTOBER 2014 AT RALEIGH. A WEEK OR TWO OUT OF HOSPITAL. Izzy on screen. 

I have spent the afternoon at home. This is the end of our long Summer holidays and the Kids go back to school tomorrow. Quite a holiday it has been and I think I am finishing it with a slightly higher baseline than I began it with. I am still studying the Sepsis data and Facebook and blogs because its the one thing that matches almost all of what happened to me.

Twice this week I have been plain bored. I count that a great improvement.  Actually – I want something to do. I want an adventure.

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HERE ARE THE EXPERIENCES OF OTHERS.

Remah  

I would like to say thanks for adding me. My name is Remah Howell and I am grateful to have found there are others who have survived sepsis. Last May we had a house fire. Right afterwards, I was helping cleaning up debris and started getting sick. I went to the hospital 3 times. They said I was suffering from GAD (anxiety) and sent me home. I went to my dr with a fever and she only done lab work and to come back in 24 hours if I still had the fever. Somewhere after that, I have no memory of, I was taken to the hospital again and placed in icu. There was a week in icu that I have no memory of except I believe in a moment I seen something. Later I was moved to another floor for another day and sent home. I was treated for pneumonia and sepsis. I did not know what sepsis was, I assumed it had something to do with my being on oxygen 24/7 now. I did not realize i could not walk until I tried to get out of the car at home. I did not realize I would be so weak. It was hard emotionally watching everyone doing the things I would have been in charge of. I tried to slowly take over my chores. They are too much for me. I am just now getting to the point that I can make coffee. Sometimes when I try to walk my hips will burn with pain. My arms and shoulders can ache without warning. I have to go and lay down. Laying down is something I can do, which I do not like to do. I have panic attacks. I can’t sleep at night. I wake up scared I might die. I wake up thinking and worrying about the week I lost in icu without knowing I was there. I cannot remember telephone numbers or simple facts. I am slowly being able to follow along a story line on the tv. My comprehension skills are horrible. Before this I had never been sick. Always healthy, enjoying life. Now, I have a bag of pills to take everyday. My b12 is low, my vit d is low, I got high blood pressure now, and thyroid problems. I tried to tell my dr about my exhausted feelings and she sent me to a counselor. I told her about not being able to climb steps they make me tremble and grow weak. My aches and pains and mental problems. The dr gave me antidepressants and said that if I had not improved by next visit, they might put me in the hospital. At that point, I decided to not talk about how bad I feel and stay away from most people. I keep thinking about the word ‘survivor’ too. Deep down I feel when I fought against sepsis that the biggest part of me died and what is here now was able to just crawl away. I am sorry for rambling.

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Stefanie

Don’t let them tell you it’s in your head!
I have permanent heart, liver, neuro, and intestinal issues all due to sepsis. Took them 5 years to figure that out. Yes, counseling is great but it can def do organ damage as well. Hugs

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Lynne Sanders-BraithwaitThat makes so much sense to me. Very close to my experiences. The only really good counselling advice I got 2ndhand from a friend whose psych said ” Your body has been through an earthquake and is still experiencing after shocks ” I am now 2 yrs 4 months away from the onset and this week feel fairly good and cheerful. I feel for you. Easily the most difficult thing I have ever experienced esp with the letdowns of the medical system. Hang in. Rest when you need. It is not in your head . It is in all of you. I brought a load of washing in today and am delighted.

CEMETERY ON A SUNDAY,

As you who read these blogs will know I have been struggling to reach a state where I am well enough to grieve. Today is a clear headed non toxic day andI can reach below physical illness to the searing grief of the loss of Izzy and our lifestyle. Finally I had a companion and helpmeet combined with the ability to really love and in one morning it was gone. I see the exquisite beauty of some of the older relationships and how I yearn for it.

When my Mum died and  I was trying to be with my Dad – he said clearly – ‘YOU ARE NOT YOUR MOTHER ”

Its like that for me. I have good people and beloved family –  but they are not Izzy.

My leg is almost well again. My breathing has improved and I was ale to strip and make my bed. I am even bringing in the washing – a little at a time.

I took a ride to the cemetery at the top of the hill today. Its very hot. ITs a koala habitat up there. A few of my friends who died young from addiction are in there someplace and many of my children’s ancestors on their father’s side.

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