*Anne is a 60 year old woman currently living with a spinal cord injury. An injury that was hugely unexpected and life altering, brought on after simple varicose vein surgery. As a passionate advocator, nurse and someone who has helped Anne on her journey, Grace from myNurse wants to share Anne’s story.’ You can read the second part of this story here.

I recorded an audio with *Anne recently to capture the moments of the beginning of her journey to rehabilitation. However, the words written here can do no justice to her personal experiences of our healthcare system. (A system prior to the introduction of the NDIS.)

*Anne:

“It was the 31st of May 2015, two days after having my varicose veins removed. I woke in the early hours of the morning, looked in the mirror to see if I was pale. I went out and sat on the sofa. Not realizing it was two days later when I woke. It only dawned on me the time that had passed when I noticed the flowers given to me from my colleagues were starting to wilt. I knew something wasn’t right. I was thirsty, so thirsty, the fridge is just over there, I could see it but for some reason I knew I couldn’t get there. Worryingly, I couldn’t move. I fell back to sleep.

“On Friday (two days later), I woke up – very thirsty again, couldn’t move and I was having auditory hallucinations. I taught the neighbors were playing the same song repeatedly, the 1950’s song, “On the Street where you Live”. There was an agonizing pain down my right side, my legs were not moving, I thought it was from the compression socks after the vascular surgery. I about how I would move but the pain stopped me. I could hear the phone in the bedroom ringing. Friends were also calling the buzzer to my apartment – concerned!

“I did shout out a few times but doubted anyone could hear me. Strangely I remained calm and to this day I do not know where that calmness came from. Eventually a knock on the door, help was finally here. The police rescue and ambulance came, my friends with them. Funnily enough at that time, my hosting instincts kicked in and I found myself offering them all a cup of tea, nearly hoping they would allow me one too. In the despair of the moment, I silently wished a cup of tea and a chat was how I could end my day. But the reality was they had to carefully maneuver me onto the stretcher, strategically carry me down the stairs of the old apartment complex and take me to hospital. Ironically, carrying me into a new life of the unknown.”

Four years ago, almost to the date, Anne was travelling from her home in an ambulance to the local acute hospital. This very moment described above by Anne. A paramedic mentioned the words spinal cord injury, at that time Anne did not realize the severity of that term. Eventually, when she was booked in for her surgery she was told by the Consultant, “Yes, we hope you will make a full recovery.” Being as practical as Anne is, she just said, “as long as I can have braces on my legs to help me walk, that’ll be fine, I’ll take that.”

The Surgeon or Doctors never clarified to her what the diagnosis of a complete T12 spinal cord injury was. Anne found herself doing her own research throughout her journey and having to find her own answers along the way. Anne was never advised of the readjustments of bodily functions, the skills she would need to sustain independence or even refer her to peer support groups.

Problem after problem, 8 weeks bedrest, a couple of issues leading to more infections and illnesses, Anne finally made it to the rehab ward where she spent four months. During those four months she worked with a social worker who assisted in the complex discharge planning process. However, Anne felt at a loss to any practical information regarding her new reality and was faced with a home-care provider that deprived her of her much-valued independence.

Anne was discharged home for 6 weeks with support workers twice daily, to assist with the morning and bedtime routine. The provider failed to offer choice, autonomy, consumer directed care or anything alike. Anne was told on multiple occasions that “you cannot have the same person every day because you will get used to them”. This was the consistency that her recovery lacked.

After six more weeks at home, Anne was readmitted to hospital with a wound infection. In March 2017, she was discharged back home only to be readmitted in May 2017 with two broken knees. She spent six weeks in hospital again. Agonized Anne lay in her hospital bed, still unable to move, zero independence and using the only tool she had at that time, her laptop, to give her some answers. To her surprise, the social worker of this large acute hospital in NSW demanded to see her bank account to prove she could afford in-home services and threatened guardianship if she declined. Thankfully, Anne had a great support network of friends who had the knowledge to help guide her on this issue.

Finally, after a tumultuous time in hospital, Anne was discharged home. Thankfully, this time upon her discharge, the newly introduced NDIS system was in place and Anne was able to receive funding for her care; care which was more tailored to her specific needs. It was at this point of the journey that I became acquainted with her and we began a crucial rehabilitation program.

Stay tuned for our next blog where we look at *Anne’s rehabilitation journey which led her to travel 17,000 kms across the world to Europe… How do you think she did?

*For client confidentiality, the client’s name has been changed for the purpose of this blog

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