"I do not want to die . . . until I have faithfully made the most of my talent and cultivated the seed that was placed in me until the last small twig has grown."
This is the very first time I've shared my story of living with chronic pain. I have long held back this aspect of my life and kept it private, but I desperately need support to pay for medical and essential living costs while I undergo the final phase of my treatment - surgery to implant a permanent Spinal Cord Stimulator on 25th October 2017 and physical rehabilitation. This is not a "sob story"; I am an optimistic person at heart and have been self-sufficient for most of my adult life as a Psychologist, where I have spent many years helping others. In fact, I tend to hide my pain so that others don't know what I'm going through. I don't like asking for help, or being a burden on others. I also hope to spread awareness about this illness, as it causes isolation, depression and in many cases, suicide.
I was aged 32 and was enjoying my second pregnancy in 2005 when I first experienced sciatic pain. I was around 7 months pregnant with my son, William, when I bent over to put on my shoe and I felt my back "pop". From this point onwards I first started to experience the searing agony of sciatic nerve pain. I could barely walk at times during my pregnancy, and the pain was simply put down to my pelvic bones adjusting to pregnancy and irritating my sciatic nerve, as can often happen.
After I had my son William, I continued to experience bouts of sciatica, usually around once or twice a month. After a workplace incident in 2009 where I jolted my back, my nerve pain became chronic to the point where I was experiencing nerve pain every second day. I was lucky to have two days in a row without nerve pain. I was unable to work but fortunately had WorkCover, being in a Government job. The pain affected my sleep: it was nearly impossible to fall asleep when I felt like half of my body was being stabbed with a hot poker. I started on an antidepressant "Avanza" after being diagnosed with Depression in response to the chronic pain during this time. This antidepressant helped me get to sleep, however during my waking hours, the nerve pain was relentless. I attended sessions with a Physiotherapist who gave me exercises to complete at home. The Physiotherapist was the first of many health professionals to suggest that perhaps the pain was "in my head" when my pain wasn't improving. I was floored at this. My first reaction was "you think I want this?". This was the first year that I missed Halloween with my son, as I was in too much pain to walk that particular night. I was forced off WorkCover when an orthopaedic surgeon said that my pain was temporary and would resolve in time. I decided to "push through" my pain the next few years, and was very hard on myself. I actually had convinced myself that maybe it was indeed in my head. I threw myself into fitness in the hope that stabilising my “core” and activating my gluteal muscles, would help improve my condition. I ran, lifted weights, did spin class, yoga, pilates… I even did Crossfit. On the face of things I looked super healthy. But on the inside I was in agony.
DIAGNOSIS & TREATMENTS
I took some short term pain medication for a brief period of time after this incident in 2009, but resisted taking it long term medication until the pain made it difficult to work. I only took over-the-counter Nurofen Plus, which was not touching the pain at all. In late 2013 I started taking prescription painkillers (slow release) in order to function and work.
After being referred to countless specialists including orthopaedic surgeons and neurologists, I started to undergo a range of treatments and procedures including: physios, osteopaths, chiropractors, 12 week multi-disciplinary pain management program, nerve root blocks, diagnostic lumbar myelogram (which resulted in spinal fluid leak and required a subsequent blood patch), 8 sciatic nerve hydrodilations, piriformis cortisone injections and L4/5 cortisone injections, medications… you name it I tried it. None of these treatments gave me the relief I so desperately needed. Each time a diagnosis and treatment was suggested, and each time a specialist or health professional would claim they could help me, I would get my hopes up, only to have them dashed.
We knew for certain that I had L4/5 degeneration, a broad bulge at L5/S1, a L4/5 disc tear, scoliosis and a 45 degree pelvic tilt that was likely contributing to the chronic pain. However, I got my hopes up we may have found an exact source of my pain when a specialist diagnosed "sciatic nerve entrapment" in May 2015. Ultrasound showed that my sciatic nerve was "tethered" and effectively "stuck" in my gluteal and piriformis muscles. Under ultrasound my sciatic nerve wasn't gliding in its sheath when I flexed my leg; normally it moves up to 4cm, it was hardly moving at all. I was advised to lay off the exercise for a while and underwent numerous painful treatments (saline hydro-dilation injections) around my nerve to dissolve the lesions that had tethered my nerve. However, despite this treatment, the pain continued.
(As a side note: to make things worse, I was diagnosed with invasive DCIS breast cancer in August 2015. I was successfully treated for this with a lumpectomy and bilateral mastectomy. But as a result I was nowhere near as fit as I once was due to all the bed rest, which also reduced my functioning.)
I later learnt that with chronic pain, even if the source of the pain has been fixed, pain signals can continue. This is why chronic pain is now becoming recognised as a disease in itself. Simply put - the pain signals from my sciatic nerve do not "turn off". In addition, my L4/5 degeneration has worsened in the last few years and my discs have begun to "dessicate" or lose fluid. This is irreversible and may require surgery in the future.
After not being able to maintain a return to work following breast cancer, as a direct result of my chronic pain, in mid-2016 I became suicidal and thought that the only way out of this pain was to take my own life. This is the first time that I have shared this publicly. I could not imagine living my life with this pain any longer. Fortunately, I had family and a fantastic GP to help me through this time. And I kept on reminding myself that I have two gorgeous boys to live for; and who both need me. I was referred to a Pain Specialist to oversee my care and to try to get long term relief. I started seeing an excellent Psychiatrist to help me cope with the emotions that are intertwined with my physical pain. My Pain Specialist hospitalised me for a trial of ketamine infusions in November 2016 and he then did a surgical procedure called a bilateral radiofrequency neurotomy (nerve ablation) on my lumbar spine in July 2017. Whilst I gained some short term relief, unfortunately both procedures failed to provide me with sustained relief. But, we had a last ditch plan: a spinal cord stimulator.
So, on the 29th August 2017 I started what is called a spinal cord stimulator trial. I spent one week in hospital where I was hooked up to a device that sent electrical signals to two neurotransmitter wires that were surgically inserted along my lumbar spine. Fortunately, the trial worked! It was the most pain relief I have had in the 12 years since this pain started. For the most part, I was pain free. Most days my nerve pain score was ZERO. Given the trial was a success I am now booked to have a permanent spinal cord stimulator implanted on 25th October 2017. Unfortunately, they took the wires out, unplugged the device and sent me home to wait for this permanent device to be implanted and am once again in a state of chronic nerve pain. But I have HOPE, and that means everything.
I am incredibly grateful to be booked for the permanent spinal cord stimulator, however I still have a long road ahead. It will take approximately 6 weeks to recover from the acute phase of this invasive surgery. I won't be able to bend, twist, lift things or drive for a period of time. I need to stay as still as possible for the neurotransmitter leads to stabilise and develop scar tissue so the leads don't migrate. Once I am able to move again, I will then undertake out-patient physical rehabilitation to get my functioning back. I am extremely optimistic that this spinal cord stimulator will be an effective tool, as part of my many tools in my pain management toolkit, that will help give me my functioning and life back.
I have been putting off asking for financial help for many months now. I have my own Psychology consulting business and do not have income protection. I have no equity in the car I got when I returned to work in 2016. I have used up all of my savings. I was so grateful and humbled by all the amazing support I received when I was diagnosed with breast cancer in 2015. I didn't want to have to ask for help once more. My GP, Psychiatrist and Pain Specialists have all advised that I need to focus on treating this chronic pain and return to work when I am well enough to hold a regular work schedule and cope with the emotional demands of being a Psychologist. Emotional pain and nerve pain are closely intertwined.
All money donated will go towards medical expenses (medical insurance, gap hospital expenses e.g. anaesthetist, out-of-pocket expenses for consultations with Pain Specialist and Psychiatrist, Physiotherapy, medical aides, pharmaceutical, transport, home equipment post-surgery e.g. to help get out of bed, reach for objects, etc). I live on my own in a first floor unit and will require medical aides to assist me after surgery. My family do not live in Brisbane, and my Mum can only be here part-time after my surgery. I have created a separate account for donations to ensure the funds are spent purely on these things. The funds will help support my medical expenses for the next 6 months.
I don't expect any hand-outs in life or for things to come for free or easily. I am so close to finally living a live free from chronic pain. Your help would enable me to stand on my own two feet again - literally! It would give me choices back in my life and help me live life to the fullest. I would be so humbled and grateful for even the tiniest amount of help. I know that there are many other people out there doing it tough; people who are going through much worse experiences. However, this procedure will genuinely be life saving for me and your support will help give me my life back. I just want to contribute to my community again, and be the mother, family member and friend that I long to be. And maybe even do cartwheels on the beach again one day. :)
With gratitude and love,
PS. Pain can be highly variable and it can take us a lot of time to learn where our limits are. Some of us who suffer from chronic pain have the mixed blessing of being able to pass as healthy and able when we're having a relatively good day, but look like a disabled invalid the next. I've had days where I'm in my activewear walking my dog at the park, and then the next, hardly able to move and using a cane. I'm fortunate enough that from time to time I can go on an outing for dinner - wearing makeup and a nice outfit - but this has, at times, lead to hurtful accusations when I'm forced to cancel yet another social invite because of a flare-up of symptoms, if I'm in too much pain to drive, or if I'm simply too exahusted from the previous day. I've lost one treasured friendship over this very issue. For those of you who have a loved one with a chronic illness, take a peek at this great article, "The Spoon Theory". https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.
In recovery after my spinal cord stimulator trial surgery.
Once the device was turned on for the trial, I felt relief from my nerve pain.
The temporary spinal cord stimulator - I had two percutaneous leads threaded up my lumbar spine for the 1 week trial, attached to an external pack (on the left of the picture). The device was controlled by an iPod.
The permanent spinal cord stimulator I am having implanted. It's rechargable and will last approx 7 years.
Xrays from Dec 2016 showing scoliosis and deviation from normal spinal alignment in lumbar region.
After one of my many procedures... this diagnostic test was very memorable... a lumbar myelogram on 13 Feb 2014. Couldn't raise my head without worsening migraine. Doctored ordered plenty of caffeine to help with this so here I am drinking coffee through a straw! Later found out a couple of weeks later that I had leaking spinal fluid and had to have a surgery (a blood patch) to stop the leak.
Update, 4 December 2017:
I've been using crochet as a wonderful "flow" activity to help me cope with my acute pain post-surgery, as well as to raise funds for my medical treatment. I'm now offering my handmade blankets/throws in return for donations of $300 or more. Here are some of my recent blankets/throws:
This above blanket took 2 weeks to made and is still available for a reward level donation. It measures approx 1m x 1.8m length and has waves of purple, lilac, pink, mint, teal, cream and fuschia (looks red in pic but is pink hued). I have nicknamed it the "Unicorn Blankie". Because it's unique and one-of-a-kind!
- Sally & Kaush Murali
- Cate Rawlinson
- Peter Kazoullis
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