'On Top of The World' Rosemary Eagle & her husband/carer John at Avoca
My Story - A Shorter Version
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 neuroma (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 -see FAQ
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 using 3 monthly Botox injections. 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.
I experience paroxysms of severe electric 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 or other similar aides. 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.
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 allydynia and shooting pains. I responded really well to this drug and for 4 days was able to partially weight bear on my bad foot with absolutely no pain, I still used crutches but two feet instead of only one. 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 three monthly Ketamine infusions. 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.
My Days
I have learnt to focus on what I can still do and not what I can’t. I am fortunate that I have a supportive husband who is my carer, he continued to work well past retirement age and has funded extensive home modifications for my disability needs and most of my mobility equipment until a few years ago when I was granted an aged care package ( NDIS is not applicable to the over 65’s). My husband gets tired of being a carer and tired from doing all the things that I used to take 80% of the responsibility for, he is always ‘time poor’, he also gets emotionally drained watching me when I am having a pain flare. His every day jobs include all the food shopping, helping with the washing, helping put it away, helping me with the cooking or cooking the complete meal, most of the dishes, personal care when needed and driving me to appointments.
2022: I have now been using a power chair for 8 years 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, 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, see the Art page on this site. I believe there are still good moments to be had in most days and I try not to miss them. To see more of my art go to www.rosemaryeagle.com
My story continues in my Blog.
Please note you can now subscribe to a mailing list to receive notification emails of new Blog entries. To subscribe Go to my BLOG
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 neuroma (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 -see FAQ
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 using 3 monthly Botox injections. 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.
I experience paroxysms of severe electric 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 or other similar aides. 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.
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 allydynia and shooting pains. I responded really well to this drug and for 4 days was able to partially weight bear on my bad foot with absolutely no pain, I still used crutches but two feet instead of only one. 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 three monthly Ketamine infusions. 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.
My Days
I have learnt to focus on what I can still do and not what I can’t. I am fortunate that I have a supportive husband who is my carer, he continued to work well past retirement age and has funded extensive home modifications for my disability needs and most of my mobility equipment until a few years ago when I was granted an aged care package ( NDIS is not applicable to the over 65’s). My husband gets tired of being a carer and tired from doing all the things that I used to take 80% of the responsibility for, he is always ‘time poor’, he also gets emotionally drained watching me when I am having a pain flare. His every day jobs include all the food shopping, helping with the washing, helping put it away, helping me with the cooking or cooking the complete meal, most of the dishes, personal care when needed and driving me to appointments.
2022: I have now been using a power chair for 8 years 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, 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, see the Art page on this site. I believe there are still good moments to be had in most days and I try not to miss them. To see more of my art go to www.rosemaryeagle.com
My story continues in my Blog.
Please note you can now subscribe to a mailing list to receive notification emails of new Blog entries. To subscribe Go to my BLOG
