I’ve been living with pain from endometriosis and back pain since around 2002, it wasn’t until 2016 that my world really changed. Before then I lived in Mexico, where I started a junior surf lifesaving school and started open water swimming. I have always been active and loved the outdoors, travel and socialising and I was also about 40kgs lighter.
Since 2016 I’ve undergone four back surgeries, hysterectomy, endless spinal injections, ketamine infusions, surgical pain procedures and lastly a spinal cord stimulator implanted. I’ve tried all sorts of concoctions of pain medications and now I’ve been granted access to use THC and CBD oils. My spine has been put in the complicated basket.
To look at me when I’m not using my walking stick you wouldn’t think I had anything wrong with my body or that I was in constant pain from my back and fibromyalgia, or that I struggle to hold conversations due to brain fog and exhaustion from having a shower. I do get a little anxious when I park my car in disability spaces even though I have a parking permit, people judge without saying anything, you can see it in the looks on their faces.
My world changed completely in April 2016 when I was getting ready for a 24-hour charity swim for MS, I was in my bathroom when my legs went from below me. I back crawled my way to my room to get my phone and got stuck between my bed and the wall, I couldn’t get up and I had lost all feeling in my legs. I called an ambulance and a friend to come and help, it was 1hr later the ambulance arrived. Thinking it was just my sciatica that had gone the NSW ambulance officers grabbed my arms and pulled me off the floor, once up they gave me the option to go to the local doctors surgery or hospital, it seemed like they preferred the local GP option. They walked me down the stairs and took me to the doctors, the feelings in my legs and feet had not come back, four years later I still have numbness in parts of my feet and legs.
Two weeks later I was admitted for a micro lumber discectomy, my pain and symptoms got worse after the surgery and I was in for a second surgery a week later. One month after the surgery I was finally discharged with bilateral DVT’s from knee to ankles, the entire experience being in the hospital I felt let down by the surgeon and the care given. The physiotherapist came in twice I think the entire time and the pain doctor had me on that many meds I could hardly function.
Post-surgery rehabilitation seemed non-existent and was something I had to push for, I ended up in hydrotherapy at an outpatient clinic over 30mins from my home. None of the local public rehab clinics would accept me due to not living in their catchment area. My pain following the surgery seemed to get worse and worse, I went and saw a private pain doctor who got me on various pain meds and suggested I try some injections and other pain procedures.
One year later I went in for L4-S1 spinal fusion posterior and anterior, my discs where almost gone and I was bone on bone along with other issues, this was another month in hospital. A few months later I was back in hospital for another month due to being in so much pain and I was struggling to walk, scans showed that one of the pedicle screws fractured the top of my L5. My surgeon tried to tell me at first he was not worried about it but that changed and his nurse told me that I knew it could be a complication of the surgery, I felt like they were trying to cover themselves or I did something wrong.
Not at any stage before the surgery did anyone from the surgeon’s clinic go over the procedure with me or any possible complications, it wasn’t until I was being prepped for the first stage of the fusion that I was told I was going to have an epidural and not till I woke up did I know I was going to have a central line put in during the surgery.
False expectations is something I have been given along the way, I was told that I should have 80% pain reduction, a physiotherapist told me that I will be back playing golf in a few months, I’m still waiting to do that.
It wasn’t until I was out of hospital that I started to get anxious every time I would go to the doctors for my scripts, thankfully I did find an amazing GP who was understanding and put me at ease. I wish all doctors where like this, I have had experiences where my normal GP wasn’t available, at that stage I was on Targin and Endone for pain relief. The GP I saw told me that she has people coming in all the time drug seeking and she would only give me one of the scripts and that her other patients who had had the same surgery didn’t need as much pain relief, I left in tears and this started my fear of seeing new doctors. Another GP told me that she is not wanting to register to be able to supply ongoing scripts for opioids and that I need to find a different GP to treat me.
I have been on income protection and now a part disability pension which took 10 months to process, I have had to jump through so many hoops and had endless questioning about my condition and my future, I have used all of my superannuation to help pay for surgeries and ended up with large personal debts due to decreased income, I’ve been granted a permanent disability payout from my super funds. I do have private health insurance which has helped but since the changes in April 2019 I have to have the highest hospital cover so that I can be covered for any future back surgeries if needed and the spinal cord stimulator.
I have nothing left to fall back on when I’m retirement age, I haven’t been able to work since the fusion. In some ways I’m happy I didn’t go back to where I was working, comments made to me about my condition where hurtful and made me panic every day.
I am still trying to get access to NDIS to help cover the cost of seeing a therapist and getting rehabilitation help, my first application was rejected as my condition was not seen as permanent and lifelong. I wish that was the case.
Most of my days are spent at home, which has along with the pain and sleepless nights have brought on chronic depression, most of my outings are to specialists. My friends are all to used to me cancelling plans. The mix of chronic pain and not being comfortable with walking, sitting and my body has made me uncomfortable going out and I get embarrassed about my weight.
I still love life and all the adventures I have had; I have done two overseas trips between surgeries. I love to cook and still be in the water. I am generally a happy person, but I have my moments and find myself often in tears and mourning the body I used to have and things I could do with ease.
I am learning that I need to take control over my body and medical care. I’m no longer afraid to speak out or switch doctors if I feel we are no longer on the same page. I have done multiple pain management courses, trying mindfulness and other techniques. Pet therapy has been one big winner and having a partner, family and friends who stand by and support me. I am determined to still make the most of life, to be able to go stand up paddle boarding again and run.