340 days until Antarctica...Here I am Baby - UB40 were right on!
approximately 13 minutes reading time
340 days until I am scheduled to leave Sydney's Kingsford Smith Airport for my life-long dream of going to Antarctica.
“Where there is no struggle, there is no strength” Oprah Winfrey
This has been a crazy week. Tonight Schrodie is in hospital and I am sad but hopeful that my beautiful, sweet boy will recover fully and quickly. His best friend Murphy is with me and we both miss him like crazy. We did have fun adventures at Bondi Beach, North Bondi, where I used to live, with a friend this morning in the thirty plus degree sunshine. So, happily our day is balanced. Murphy is exhausted, as am I.
Just like me Schrodie pushes on stoically when he is unwell, showing no external signs of sickness, weakness, fear or pain. I watch him like a hawk and notice everything. I would starve before I let him suffer or want for anything, especially medical care. He has been my light in the darkness and reason to get up on days where I did not feel that I could or want to move, let-a-lone live. Alas, all that has happened to me, plus more, has also happened to him, which is so unfair. Yet he remains the biggest, brightest star and soul that I have ever met. How blessed I am that he found me. Schrodie brings only light, love, joy and laughter into the world being the wonderful soul that he is; funny, cheeky, a super smart boy.
Yesterday we all went to find out about the air-conditioning that will be part of my new home. Then we went to the music store and I bought my very first guitar. I have always loved the guitar, any genre of music, every type of guitar. I do have a special fondness for an acoustic guitar. A six string and any man who plays one is hard to beat in my book. For me, even better and more cool is a woman that plays a guitar, normally in rock and country music from what I recall. Women that play the guitar are hot in my book. Yet my favourite instrument is actually the violin. It reaches into my soul, whether it be played as a violin or fiddle. I love it in Classical, Orchestral, Opera, Church, Folk, Celtic, Rock and Pop when it appears, Country, Hillbilly music and every other genre and way imaginable.
Over the years many of my friends have been musicians, many of whom played guitar and they played different genres of music at all levels. I never envisaged that I would want to learn guitar, play one or buy one. Here I am now in the most surprising situation. I have not read music since I was a child and never expected myself wanting or needing to learn as a grown-up. Why did I buy a guitar? Now? Last June I unexpectedly and rather quickly became a cripple, completely disabled as a result of ANCA Vasculitis caused by the Traumas I had suffered, especially losing everything including my home in the January 2020 bushfire and the critical rare double pneumonia.
It started innocently enough as I was released from almost two months in hospital, critical with a rare smoke-induced pneumonia, with two crushed lungs and fluid on both lungs that had developed during the bushfire season whilst I stayed to work and support my employer and my community. After losing my home I was fortunate to find fully-furnished temporary accommodation. Upon returning here from hospital in early February I was incredibly weak and finding the mattress too hard for me. Like Goldilocks, it needed to be just right. I would awake with pain, pins and needles as well as numbness in my shoulders, various parts of my hands and arms.
I dismissed it all as being from the mattress being too hard for my malnourished and emaciated body. I even joked about being too delicate for the bed. Over the weeks it got worse and I became weaker, unable to hold a cup, glass or small dish or even a tea spoon. I put the weakness down to pneumonia although I pushed myself, loaded with pain-killers to walk a few kilometres a day with Schrodie and it was glorious, our walks being so beautiful and uplifting, invigorating for us both. I also realised that I might be dying. I began to retreat from the wonderful people I loved who had loved me, cared for me and supported me so far. I felt that they had endured enough and as my condition deteriorated I pulled away, pushed them away, even out of my life and kept them at bay out of love, to spare them. I told them nothing. I now realise that this was my mistake as it was not my decision to make on the behalf of others. It was, however, the right decision for me at the time. By April my pneumonia had not improved and was deteriorating. Due to covid-19 my Respiratory Specialist appointments since the end of February were tele-health phone consults as it was too dangerous for me to go to the hospital. I started another course of strong antibiotics hoping to clear the pneumonia. The medication made me more unwell from the side-effects. I was almost hospitalised for this but more and different medication improved the side-effects until my body could no longer tolerate the medications and I was told to cease taking them after seven weeks.
In early May, as the covid-19 situation started to improve, I had found a wonderful practitioner of Acupuncture, who worked locally and had studied here and in China. I began to see him three times a week. With his care and herbal tinctures to help me eat, sleep and build strength my condition improved. Most especially and best of all I got stronger. Yet the pain in my shoulders, neck, arms and hands got significantly worse. I spoke with him about it and he told me that my energies were blocked and that it would take time to recover and for the pain to stop. He also told me that he knew that I was getting stronger as he could hear it in my voice and that he had been very worried about how weak I had been when he met me, thinking I might die as he had struggled to find a pulse or hear my voice.
The numbness in my shoulders, hands and arms got worse and moved around. I told him that I believed that my nerves were compressed. I had learned about this when I broke my neck in 2012, just before I had made my tree-change. He said that I would be okay as long as the pain and numbness moved. The pain was by now unbearable. I had begun to take Lyrica again in May to help ease the nerve pain. It did little to help me but as my condition deteriorated further and the pain increased exponentially I was taking 150mg of Lyrica every eight hours. I had only ever used Lyrica in the short term whilst I recovered from my broken neck, and on the odd, rare occasion that I suffered an exacerbation of my injury with significant and troublesome pain.
The strength and function in my hands also started to deteriorate until it disappeared. My sense of feeling also disappeared. I am a tactile person so this was beyond heartbreaking for me. I don't want to live a life where I cannot feel. I was having the same experience in my legs and feet. I had become so weak that I could no longer stand-up for more than a moment. I was too weak and in too much pain to shower or wash my hair. I was soaking in Epsom salt baths and struggled with the pain, movement, getting in and out of the bath. I needed to rest for at least an hour after any minor exertion. This situation was not tenable. My acupuncturist advised me to see my doctor as my pain became beyond excruciating or bearable. I did not believe that a family doctor could help me.
A few of my friends checked on me daily making sure that I was okay and still living. They cooked and brought me food which I could not eat as I became unable to open the containers. The sheer and desperate agony of fighting with containers and losing was more than I could bear. I could no longer eat or stomach tap water. I was unable to open my water bottles, even with tools. My jaw was hurting whenever I chewed and I wondered if it was because I had not eaten properly for six long months. Worse still my fingers stopped working. I could no longer manage to hold an apple or worse still to conduct the finger-prick test to check my blood-sugar. This is incredibly dangerous for a diabetic, particularly a type-1 diabetic. I gauged my body to determine how much insulin or carbohydrates I might need. I managed.
The last week of June I went to my accupuncture appointment on Monday morning, got home, went to bed and my left leg got incredibly painful and went numb. I lost the feeling in my foot. My knees and ankles were balls of the most horrendous pain. Within minutes this had progressed to my left foot. I called my acupuncturist and he said to worry if it did not improve. I awoke Tuesday morning with my left arm, shoulder, elbow, wrist and hand being excruciatingly painful and without feeling in my fingers. The Wednesday morning my right ring finger and pinkie as well as my shoulder, elbow, wrist, and left hand were unbelievably painful. The Lyrica was barely making a difference. I could not take other pain killers as my kidneys and liver were impacted by all the medication in January and I was not prepared to risk permanent organ damage, in case I lived.
By this stage I could barely move and Schrodie lay next to me in bed and stayed with me, my source of solace. My only reason to move was to make sure he had food, water and access to the yard. I knew that I was dying and the agony was hell. Thursday and Friday my condition deteriorated. By now, I was using my teeth to do everything I needed, like access and measure my insulin and hammering my insulin pen into my thighs to desperately and clumsily deliver my insulin dose. The next Monday was when my right leg and foot went numb. Tuesday morning I rang my brilliant Endocrinologist to seek her advice and assistance with hospital admission. I explained to her my concern about my condition being misdiagnosed as Diabetic Neuropathy. I did not believe this to be the case. My endocrinologist agreed. I was advised to go straight to Emergency where I could be diagnosed. I had no transport to hospital and nobody to mind Schrodie until my friend Deb returned from her holiday the next day. The one person who could help me no longer would. Even dying I would not ask him, I could not.
Deb agreed to look after Schrodie and after the difficult conversation about my potential death, to give him a life-long safe and loving home. This was all that mattered to me, Schrodie's safety and security, a good life. My affairs were in order. I no longer had a home or possessions, except for my much loved car. For transport, the wonderful Michele, my bushfire liaison officer organised for me, Community Transport for which I was incredibly grateful. Transport pick-up was Thursday morning. Deb was leaving with Schrodie when the van arrived. I had taken two hours to dress as the struggle was so great with my body not functioning. By the time I got to the bus outside the house, I needed the driver’s help. He strapped me into my seat-belt and like Cinderella, he put on my shoes and tied my laces as I was unable to do so. For me, this was yet another lesson in humility and the amazing kindness and generosity to be found within humanity, this milk of human kindness.
When I entered the Emergency Doors at the Prince of Wales Hospital in Sydney, I never expected to leave. They took me through immediately and I went into Covid isolation. My temperature was over thirty eight degrees Celsius and I had Diabetic Ketoacidosis. I was in fact dying. My body was shutting down.
After more than six months of fighting to survive and regain body function with aggressive chemotherapy, high-dose intravenous and oral steroids and a cocktail of other dangerous drugs, treatments that might have killed me, physiotherapy and specialist hand therapy I am able to do everything I could do before. I am not as strong with the muscle wastage was so severe and slow to repair along with my nerve recovery. I live independently and drive safely once again. Schrodie and I do everything physically, that we did before the fire. I am on barely any medication and aim to be off it all as soon as I am able. I am so glad I did not go to live in the home with other disabled people upon my discharge from hospital. I was so terrified and helpless, not knowing how I would fend for myself and Schrodie.
I struggle and persevere with all manner of exercises and tasks, daily which I will share with you later. I am impatient to recover fully. No medical professional can believe the level of my recovery for anyone that suffered any damage let-a-lone the severity of illness and physical trauma, compounded with the emotional traumas that I have suffered.
My hand therapist suggested piano to help rebuild the small, specialist muscles in my hand. Piano is not a viable option for me from a storage or financial position. After much consideration, I do not believe that the piano will help me build the muscles I need in my hands, particularly my right. I believe that playing piano is not dissimilar to typing or texting in the muscles and tendons used to complete the tasks. My young nephews who are all musical and play piano believe that piano is easier learned as a child. I agree with them all. Guitar on the other hand uses the hand, wrist and arm muscles differently. I do not yet have the control to move my fingers with the dexterity needed to play the guitar well with easy, fluid finger movements. I do expect this to improve with practice.
After speaking with the musician in the guitar shop on Saturday, he agreed that guitar would be the better choice for me and my incredibly unique situation. In choosing a guitar he suggested a light, basic guitar which is a very good value for money instrument and more than adequate for me. He suggested a full-size guitar with a slightly more slender neck that will be easier for me to hold. I told him that my finger sensitivity is heightened and that I did not wish to suffer pain whilst learning. My heart bleeds I do not wish my fingers to bleed as well. My guitar is a nylon string. I am happy. After an investment of just over $150. I am set to start lessons. I need support and I expect this to be incredibly challenging, frustrating, rewarding and fun. My new guitar is Johnny in tribute to Johnny Cash and Jon Bon Jovi.
I also spoke with other musicians in the shop who referred me to the ‘Justin Guitar’ website as a fantastic support to learning from scratch. I have checked out the site and it’s pretty cool. Justin seems fantastic. When I am proficient, I will reward myself with a Fender.
Tomorrow I have medical appointments and Schrodie has tests. Busy week ahead, so much to do and I will fill you in as we go. I will leave you with photos of Schrodie (silver and tan) and Murphy (black) at Bondi Beach this morning. I will also show you my new guitar and the boys after our adventures yesterday.
If you'd like to ask anything, please leave a comment below.
Here I am Baby.
Schrodie at North Bondi, Bondi Beach