The Trials and Tribulations of Chronic Pain
I recently attended an information session on chronic pain. It's only taken over thirty years to be referred to the chronic pain clinic! Is that a measure of my resilience and ability to endure, or is it a reflection of the poor insight and understanding amongst large swathes of the medical profession? In reality probably a little of all of the above and some more.
After living what feels like a lifetime with both fibromyalgia and chronic pain I wondered if I would discover anything new. I think my first surprise was the number of people who filled the room. A regiment of warriors each fighting daily battles that largely go unnoticed. We even have our own mantra - "I'm fine".
Why do we say we are fine when evidently we are anything but fine? For me there are several reasons. Probably top of my list is the feeling that there is no point in trying to explain anymore because no one is really that interested, especially me. GPs just want to prescribe painkillers and antidepressants which you either can't tolerate or they don't work. I can't decide if their understanding of chronic pain or fibromyalgia is extremely limited or they are just so over worked they sadly don't have the time or resources to help alleviate the suffering of someone with a life changing but not life threatening condition. Personally I rarely go now but I am grateful to the neurologist who referred me to the chronic pain clinic.
Next there are friends and family. Here I think there is an interesting dynamic which centres around the question "Why aren't you getting better?" Family and friends struggle to understand why you are not getting better and start to gravitate to that thought "It's all in your head." Which in a sense it is but only in so much that my nervous system is fucked up and my brain no longer responds to the messages it receives and fails to close down the pain pathway. Believe me the most frustrated person beyond doubt is me. Yes I am at times a tad pissed off with the accusation that it's all I'm my head but I am way more pissed off that I still haven't managed to find a way to just be well again. To be able to work, exercise and socialise like the majority of people do.
Acceptance is challenging. Why? Because to a degree it feels like giving in. Giving up on the dreams you have of living the life you once had. That said I am realising that acceptance is not about accepting that this is as good as it gets. Acceptance is about acknowledging that this is where I am now. This is my starting point for today. Some days are good and some not so good but that is OK.
Two other things I have learnt over the years are the importance of balance and pacing. I'm still not there yet, rather more a work in progress. I'm hoping the chronic pain physio can help me with building up my endurance to exercise as I regularly crash and burn in this department. I have what Buddhists call a grasping mind. I grasp at the thought of being super fit and then set myself up to fail because the exercise regime I set is unrealistic. I'm not going to castigate myself here as it is really down to a lack of knowledge and understanding of exercise programmes. This leads me nicely onto compassion. I guess like many of us out there self compassion is something I need to work on. Whilst I get frustrated and angry at times, as evident from my earlier paragraphs, I need to recognise that these emotions have taught me much. Neither are bad emotions. They are like joy and happiness merely two emotions within of our complex inner landscape that make us human. And when I reflect upon them I can see it is anger and frustration that have enabled me to develop endurance and resilience to keep fighting over the years. They have enabled me to survive and to experience joy and happiness as well as anger and frustration.
After living what feels like a lifetime with both fibromyalgia and chronic pain I wondered if I would discover anything new. I think my first surprise was the number of people who filled the room. A regiment of warriors each fighting daily battles that largely go unnoticed. We even have our own mantra - "I'm fine".
Why do we say we are fine when evidently we are anything but fine? For me there are several reasons. Probably top of my list is the feeling that there is no point in trying to explain anymore because no one is really that interested, especially me. GPs just want to prescribe painkillers and antidepressants which you either can't tolerate or they don't work. I can't decide if their understanding of chronic pain or fibromyalgia is extremely limited or they are just so over worked they sadly don't have the time or resources to help alleviate the suffering of someone with a life changing but not life threatening condition. Personally I rarely go now but I am grateful to the neurologist who referred me to the chronic pain clinic.
Next there are friends and family. Here I think there is an interesting dynamic which centres around the question "Why aren't you getting better?" Family and friends struggle to understand why you are not getting better and start to gravitate to that thought "It's all in your head." Which in a sense it is but only in so much that my nervous system is fucked up and my brain no longer responds to the messages it receives and fails to close down the pain pathway. Believe me the most frustrated person beyond doubt is me. Yes I am at times a tad pissed off with the accusation that it's all I'm my head but I am way more pissed off that I still haven't managed to find a way to just be well again. To be able to work, exercise and socialise like the majority of people do.
Acceptance is challenging. Why? Because to a degree it feels like giving in. Giving up on the dreams you have of living the life you once had. That said I am realising that acceptance is not about accepting that this is as good as it gets. Acceptance is about acknowledging that this is where I am now. This is my starting point for today. Some days are good and some not so good but that is OK.
Two other things I have learnt over the years are the importance of balance and pacing. I'm still not there yet, rather more a work in progress. I'm hoping the chronic pain physio can help me with building up my endurance to exercise as I regularly crash and burn in this department. I have what Buddhists call a grasping mind. I grasp at the thought of being super fit and then set myself up to fail because the exercise regime I set is unrealistic. I'm not going to castigate myself here as it is really down to a lack of knowledge and understanding of exercise programmes. This leads me nicely onto compassion. I guess like many of us out there self compassion is something I need to work on. Whilst I get frustrated and angry at times, as evident from my earlier paragraphs, I need to recognise that these emotions have taught me much. Neither are bad emotions. They are like joy and happiness merely two emotions within of our complex inner landscape that make us human. And when I reflect upon them I can see it is anger and frustration that have enabled me to develop endurance and resilience to keep fighting over the years. They have enabled me to survive and to experience joy and happiness as well as anger and frustration.
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