Hello, my name is Hannah Pennington. I am 30 years old and live in Melbourne, VIC.
In October of 2012 I was diagnosed (sort-of) with a non-genome type of Spinal Muscular Atrophy. I use the term “sort-of” because non-genome means I do not have any of the genetic mutations known to cause Spinal Muscular Atrophy. This also means that at the end of the day, no one is really sure what my actual diagnosis it. I struggle constantly with not being able to attach myself or my condition to a particular group or cohort of sufferers like myself and often feel quite isolated by my non-descript condition.
My journey with chronic pain began post-diagnosis in 2012, and it would be a couple of years before I understood that the aches and pains I had assumed were normal were in fact a bi-product of my muscles degenerating, slowly becoming less effective at supporting the weight of my body and holding myself up. Spinal Muscular Atrophy or my particular disease essentially means that the motor neurons which control my muscle movement and function are progressively destroyed and not functioning correctly. This leads to degeneration and loss of muscle altogether and can often take years to worsen. If I look back at my life in 2012 and comfort levels it is hugely incomparable to my life now, I would begin a journey with not only pain but the grievance of the life which I had planned for myself – dreams of becoming a chef or a police woman shattered and I experienced a deep depression, fuelled with suicidal thoughts and the rock bottom of my entire life.
I have had lots of help to manage my particular circumstances, years of professional supports from Neurologists, Genetic Counsellors, Rheumatologists, Pain Management Clinics, Physiotherapists, Occupational Therapists, GP’s, Sleep Disorder Specialists, Psychologists and Psychiatrists. Did I mention that as well as living with a degenerative condition / disability I also suffer from anxiety & depression – and this existed pre-2012.
I once described my disease to my partner as if I am standing in the middle of the road and I can see a car coming towards me, slowly – but right in my path, and I cannot move. No matter what I do I can’t step aside or get out of the way, I’m terrified of the future as there is no known cure for my condition.
To initially manage my pain, I saw a lovely Rheumatologist at Royal Melbourne Hospital. I had several scans undertaken of my pelvic region as this was originally where my pain was most prevalent – unrelenting stabbing and sharp pains in my lower back and pelvis. The scans weren’t clear, and I commenced taking strong arthritic medication to help with the pain, this lasted a year or so until I became quite unwell on the medication & as it wasn’t proving to be effective at pain relief, I ceased the medication. I then started trialling medication to help me sleep through the night – as my pelvis kept me awake and I would wake 8-10 times a night because of the discomfort I was experiencing. I took countless medications over the years, each not suiting me for varying reasons and even led to a suicide attempt because of how tumultuous my life had become thus being strictly banned from one medication which was actually quite effective at managing my nightly pain. My pain then crept up my back and into my shoulders, I had developed bursitis in my shoulders, groin & thighs from the degeneration of muscles in those regions and required 3-monthly steroid injections into those areas to manage the excruciating pain. While these provide pain relief for a time, in the long term they have quite negative consequences. Doctors hesitated to write referrals for the injections as the steroid can cause further degeneration, lucky me!
Every couple of months I’d have serious falls (one led to a broken foot) and countless injuries to my lower back which left me bed-ridden for days and the only relief were strong opioids my specialist reluctantly prescribed me (I completely understand why most people struggle with Opioid addiction, nothing floods your body with ripples of pain relief quite like they do. It seemed that for the best part of 7 years the only way to manage my pain was through medication, and I had no idea what the concoction of drugs was going to do to my body long term – and quite honestly I did not care.
In 2018 I had been taking a medication for pain relief called Lyrica – Lyrica was my absolute saviour in the beginning, it was the fist time in several years since I had slept right through the night. So much so, that I initially kept wetting the bed because I was so knocked-out I wouldn’t be roused when I had to get up to get to the loo in the middle of the night as I sometimes do. I was even advised by a medical professional to just up my dosage if I felt I needed a bit more relief – after no time I had doubled my original dosage. After a while though, I started to experience really frustrating side-effects, such as weight-gain, a real fuzzy feeling in my brain that effectively made me feel like I was becoming a bit of an idiot and kept forgetting things and felt I was weirdly becoming worse at my job. I made the decision in mid-2019 that if I were going to really get my life together it would mean that I needed to cease all of my pain medication – and I did.
In 2019 I attended a Pain Clinic at a major Melbourne Hospital – and had a terrible experience. Despite telling the doctors that I was really happy to relinquish my medications and try something new I was treated like a drug-addict – told that I would be given a new medication to manage my pain once I had confirmed with them that I had undertaken a withdrawal of all medications. Once this had been done, there was no other medication – I was treated like a child. I hold transparency and honesty so high and to have been kept in the dark regarding my own medical treatment I did not return to the Pain Clinic.
Nowadays I am medication free – aside from the odd Opioid if I injure my back or have a day when I just can’t function (roughly once per month) and I manage my pain with bi-weekly Clinical Pilates, fortnightly Physiotherapy & Psychology and just trying to be nicer to myself. I still worry constantly about the way which living with Chronic Pain affects my life, every single one of my relationships and my work. I worry that I’m a horrible person when I’m in pain, that I’m too emotional and that is inexcusable but - life is hard, but I think that hard is subjective & I’m just trying to not make it any harder for myself than it has to be.