My Story
There's art, but firstly there's CRPS (Complex Regional Pain Syndrome). It's intractable neuropathic pain with no known cure and at times it's hell. It affects everything I do or want to do. Every decision or commitment factors in my CRPS and the limitations and severe pain flares it brings.
On Top of the World, Rosemary and John at Avoca
In the Beginning
When my pain first started and before a diagnosis 4 years later, it was described by a doctor as pain that was not tenable and I never imagined it would not be medically fixable or that I would become disabled as a result of it.
My chronic pain started in 2007 and I had surgery to remove a growth on a nerve in my foot that was causing horrific shooting pains and preventing me weight bearing. However, the pain continued after the surgery and the surgeon did not have any answers as to why. I had two more operations by different surgeons, but the pain continued. At this stage I thought each surgery would fix the problem and was devastated when the pain returned.
After 4 years I was officially diagnosed with Complex Regional Pain Syndrome (CRPS), a medical condition involving a malfunction of the peripheral and central nervous systems where long lasting intense neuropathic pain is experienced, usually in a limb. Amputation is not an option.
Day to Day 24/7
Some days without warning I experience paroxysms of severe electric shock shooting pains and deep throbbing pains that often continue for hours and days with little respite, depriving me of sleep. The shooting pains feel like I have been shot by a sniper in the foot with a large bullet; I used to be absolutely terrified. As well as the shooting pains my foot feels like it is on fire, it is red and swollen and super sensitive to touch, movement such as the vibrations of traveling in a car can trigger pain.
Due to this pain I am significantly disabled and use crutches and an electric wheel chair. It is frustrating to see your independence slipping away as you struggle with not being able to do all the things you used to do, this may be as simple as finding you need help to shower. Society is conditioned to believe that medicine is miraculous these days and that everything is fixable so we are up against some very set attitudes where you will be struggling with not just your pain but the attitudes and lack of understanding from some of your friends and family, especially as there may not be anything obviously wrong with you, so much pain is invisible, how do you show pain is real, you can’t.
I have learnt to focus on what I can still do and not what I can’t, although I will always grieve for the losses. I am fortunate that I have a supportive husband who is my carer. His does many every day jobs including shopping, going to the post office, helping with the cooking or cooking the complete meal, and he usually does the after-dinner dishes as well as personal care when needed and of course driving me to numerous appointments.
My Emotional and Physical World
CRPS has torn apart my assumptions about how life is supposed to operate. My grief during the early years was insurmountable; I was in a state of shock and confusion. When I was finally diagnosed and developed an understanding of the disease, I realized that I was highly unlikely to ever be completely pain free again. Prior to my first operation in 2007 I had been diagnosed with Parkinson's disease and I really felt my future was doomed. Fortunately, this diagnosis was taken away 4 years later and replaced with Cervical Dystonia which for me is fairly mild and to date is being well managed by a neurologist. Having my Parkinson's Disease taken away was a gift and a pivotal factor in my commitment at that point in time to fight CRPS and get on with my changed life to the best of my ability.
Turning Points
Eventually I reached a turning point where I decided something had to change. Regular visits to a psychologist helped me come to terms with my changed life and losses, and I developed some coping strategies and taught myself not to panic when I have bad pain. I also decided to modify my studio and not give up my art or sell my etching press, these were important decisions that would help me become a stronger, more fulfilled person despite my pain.
In 2014 I had my first 5 day in hospital Ketamine infusion to see whether this would control the allodynia and shooting pains. I responded really well to this drug and for 4 days was able to partially weight bear on my bad foot. Ketamine has a carryover effect for me and helps to lower my pain levels in the following months as long I pace my activities carefully. I now have Ketamine infusions a few times a year. Without the multi-disciplinary approach to pain management that my pain clinic offers I would not be doing as well as I am, it is not just a matter of medical interventions on their own and I am grateful that I have a supportive pain management team because without them I would not have progressed the way I have physically and emotionally.
I have been using a power chair for 8 years now as well as crutches when needed, this has given me a lot more independence around the house. The decision to buy this chair was made after I tore my shoulder ligaments and couldn’t use the crutches for a period of time. I do not view using a wheelchair as a disaster, I consider myself fortunate to live in a country where I am able to own such an amazing piece of equipment.
My Art
My art gives me an important focus in my life, I call it my lifeline, it is something that I am still able to do and am passionate about; I am also able to use my art to express how I experience pain Art About Pain. I believe there are still good moments to be had in most days and I try not to miss them.
When my pain first started and before a diagnosis 4 years later, it was described by a doctor as pain that was not tenable and I never imagined it would not be medically fixable or that I would become disabled as a result of it.
My chronic pain started in 2007 and I had surgery to remove a growth on a nerve in my foot that was causing horrific shooting pains and preventing me weight bearing. However, the pain continued after the surgery and the surgeon did not have any answers as to why. I had two more operations by different surgeons, but the pain continued. At this stage I thought each surgery would fix the problem and was devastated when the pain returned.
After 4 years I was officially diagnosed with Complex Regional Pain Syndrome (CRPS), a medical condition involving a malfunction of the peripheral and central nervous systems where long lasting intense neuropathic pain is experienced, usually in a limb. Amputation is not an option.
Day to Day 24/7
Some days without warning I experience paroxysms of severe electric shock shooting pains and deep throbbing pains that often continue for hours and days with little respite, depriving me of sleep. The shooting pains feel like I have been shot by a sniper in the foot with a large bullet; I used to be absolutely terrified. As well as the shooting pains my foot feels like it is on fire, it is red and swollen and super sensitive to touch, movement such as the vibrations of traveling in a car can trigger pain.
Due to this pain I am significantly disabled and use crutches and an electric wheel chair. It is frustrating to see your independence slipping away as you struggle with not being able to do all the things you used to do, this may be as simple as finding you need help to shower. Society is conditioned to believe that medicine is miraculous these days and that everything is fixable so we are up against some very set attitudes where you will be struggling with not just your pain but the attitudes and lack of understanding from some of your friends and family, especially as there may not be anything obviously wrong with you, so much pain is invisible, how do you show pain is real, you can’t.
I have learnt to focus on what I can still do and not what I can’t, although I will always grieve for the losses. I am fortunate that I have a supportive husband who is my carer. His does many every day jobs including shopping, going to the post office, helping with the cooking or cooking the complete meal, and he usually does the after-dinner dishes as well as personal care when needed and of course driving me to numerous appointments.
My Emotional and Physical World
CRPS has torn apart my assumptions about how life is supposed to operate. My grief during the early years was insurmountable; I was in a state of shock and confusion. When I was finally diagnosed and developed an understanding of the disease, I realized that I was highly unlikely to ever be completely pain free again. Prior to my first operation in 2007 I had been diagnosed with Parkinson's disease and I really felt my future was doomed. Fortunately, this diagnosis was taken away 4 years later and replaced with Cervical Dystonia which for me is fairly mild and to date is being well managed by a neurologist. Having my Parkinson's Disease taken away was a gift and a pivotal factor in my commitment at that point in time to fight CRPS and get on with my changed life to the best of my ability.
Turning Points
Eventually I reached a turning point where I decided something had to change. Regular visits to a psychologist helped me come to terms with my changed life and losses, and I developed some coping strategies and taught myself not to panic when I have bad pain. I also decided to modify my studio and not give up my art or sell my etching press, these were important decisions that would help me become a stronger, more fulfilled person despite my pain.
In 2014 I had my first 5 day in hospital Ketamine infusion to see whether this would control the allodynia and shooting pains. I responded really well to this drug and for 4 days was able to partially weight bear on my bad foot. Ketamine has a carryover effect for me and helps to lower my pain levels in the following months as long I pace my activities carefully. I now have Ketamine infusions a few times a year. Without the multi-disciplinary approach to pain management that my pain clinic offers I would not be doing as well as I am, it is not just a matter of medical interventions on their own and I am grateful that I have a supportive pain management team because without them I would not have progressed the way I have physically and emotionally.
I have been using a power chair for 8 years now as well as crutches when needed, this has given me a lot more independence around the house. The decision to buy this chair was made after I tore my shoulder ligaments and couldn’t use the crutches for a period of time. I do not view using a wheelchair as a disaster, I consider myself fortunate to live in a country where I am able to own such an amazing piece of equipment.
My Art
My art gives me an important focus in my life, I call it my lifeline, it is something that I am still able to do and am passionate about; I am also able to use my art to express how I experience pain Art About Pain. I believe there are still good moments to be had in most days and I try not to miss them.
