- Any idiot can fake an illness
- but to fake being well
- takes real talent
- by unknown
I have lived with debilitating pain since my mother drove in front of a truck with me unrestrained in the front seat when I was barely one year old. I don’t know what life is like without pain. My choice has been to have pain BE my life or to have a life where I deal with my pain constructively. For those who do not know about dealing with chronic health issues constructively, I recommend you watch Jane McGonigal’s talk about how she dealt with her debilitating head injury (click here). Lorimer Mosely, pain specialist and author, has a more technical but fascinating take on chronic pain (click here).
Since one of the first questions pain clinics ask patients is to rate their pain on a scale of one to ten, I thought I’d start there. One of the major problems in pain management is that to get through medical school you have to be a healthy person which means the average doctor’s experience of pain and their understanding of those numbers are going to be different from mine. So I am going to set out my experience of chronic pain on my spectrum.
- Ten is significant debilitating pain that affects my vital signs- blood, pressure, pulse, respiration,temperature. I maybe nauseous, sweaty, shaky, and weak. AND there is risk of damage with movement. In my case, bone chips working their way into my brain or scraping along my optic nerves or a liver cyst rupturing into my abdomen. I am conscious, sleep is out of the question, but I am not usually responsive to my environment.
- Nine is significant debilitating pain that affects my vital signs- blood, pressure, pulse, respiration,temperature. I maybe nauseous, sweaty, shaky, and weak. AND moving around exacerbates my symptoms. This winter it has been the risk of putting enough pressure on some major blood vessels to seriously compromise my circulation. So moving without caution may result in my losing consciousness and so on. My inner environment takes precedence over my outer environment. I may slip from meditation into genuine sleep occasionally but it doesn’t last long.
- Eight is significant debilitating pain that affects my vital signs- blood, pressure, pulse, respiration,temperature. I maybe nauseous, sweaty, shaky, and weak. AND I have to separate my intent from my actual movement, I begin to lose awareness of my immediate outer environment when I move as I have to focus in my inner environment to stay functional. Movement may take me to the edge of consciousness. Food is irrelevant, I have no resources for digestion.
- Seven is significant debilitating pain that affects my vital signs- blood, pressure, pulse, respiration,temperature. I maybe nauseous, sweaty, shaky, and weak. AND my coordination, reaction time, and strength are compromised. Moving requires my total focus, I begin to lose awareness of my larger environment. Meditation replaces sleep.
- Six is significant debilitating pain that affects my vital signs- blood, pressure, pulse, respiration,temperature. I maybe nauseous, sweaty, shaky, and weak. AND my coordination, reaction time, and strength are all compromised. I can do what HAS to be done, everything that is not urgent goes by the wayside. Sleep is possible, but is shallow and easily interrupted. Eating becomes a challenge not a pleasure.
- This is my normal if I take low-dose naltrexone (click here)! Five is significant debilitating pain that affects my vital signs- blood, pressure, pulse, respiration,temperature. I maybe nauseous, sweaty, shaky, and weak. BUT with enough motivation and adrenaline I can set it aside and function for short periods of time. I can hold a conversation, engage with the world around me, and mange the daily necessities of living.. I can usually drop off to sleep and stay asleep for several hours. Waking up and getting up are two different process. A life time of this has seriously compromised my adrenals and other endocrine functions, and exacerbated my inherited hypothyroidism and mal-absorption issues.
- Four is significant debilitating pain that affects my vital signs- blood, pressure, pulse, respiration,temperature. BUT I can move cautiously, think about the future, and process incoming information for longer periods of time. I can fall asleep easily and manage to get up if I am suddenly awakened.
- Three is significant debilitating pain that does not affect my vital signs- blood, pressure, pulse, respiration,temperature. and I have a range of movement I can move freely within, I may enjoy socializing instead of tolerating it, I have may enough energy to have visitors or travel. Sleep is actually restful, though waking and getting up is still a challenge. I can not only enjoy eating, I can digest the food.
- Two is significant debilitating pain that does not affect my vital signs- blood, pressure, pulse, respiration,temperature. and I can maintain moving freely for an extended period of time. with only the occasional physiological pain spike. I can problem solve and handle more difficult people and issues. I can I can sleep in spite of interruptions and wake up functional.
- One is significant debilitating pain that does not affect my vital signs- blood, pressure, pulse, respiration,temperature. Pain is a constant in the background, but I may have normal vital signs, and be able to move freely without forethought. My mind is clear and I feel good emotionally and can handle distractions and interruptions. I can sleep deeply and wake up easily. I enjoy preparing food as well as eating it.
The last time I wrote something like this the general practitioner I went to sent me to the state mental hospital for a psychiatric evaluation (click here). With considerable prompting, I got a psychiatric referral from them to the UMASS pain management clinic, who apologized to me for the medical communities persistent disregard of my physical realities and the demeaning practice of making a diagnosis of neurotic pain,. They also complimented me on my pain management skills and asked me to be available to their medical students so they could learn what chronic pain was and how patients can live full lives with it.
As I was diagnosed as completely disabled with no possibility of any improvement ever, I also qualified for lifetime disability benefits. The physician told me that the drawback of disability was that tended to reduce people’s motivation to heal as it essentially it paid people for being sick, but that he would give it to me without hesitation as my history proved my desire to function. Disability did pay for some of the treatments I received at UMASS, but I found that the physician was even more accurate than he realized. I spent more time sitting in toxic buildings dealing with poisonously obstructive bureaucrats having to repeatedly prove that I was in pain than I ever had when I was working.
Constantly being forced to prove my pain to the bureaucracy only adds to my burdens. If I am coherent, I am accused of malingering. If I give way and allow myself to express the degree of pain I live with,v am accused of hysteria.
It is alternative medicine that has kept me functional (click here and here ) and pursuing my interests that keeps me motivated. But the intent of disability is punitive and the goal is to socially and intellectually isolate and deprive clients of any stimulus or resources that would permit them to participate in life. The system is set up to discourage achievement and improvement.
I was hit by lightning in 2014, diagnosed with liver disease in 2017, found an AV malformation at the base of my brain in 2019 and got Covid-19 in 2020. I have finally had to resort to disability and my reward is still receiving a financial pittance, being shackled to the worst of the mainstream medical paradigm, and being forced to allow malicious petty individuals to intrude into every part of my life. I have been deemed non-compliant and barred from publicly funded health clinics for insisting that I have a diagnosis before prescribing drugs, refusing to take drugs that have caused bad reactions and refusing unnecessary surgeries.
Among other incidents in the past, I was told I could not attend graduate school while on benefits even though the law specifically states education is encouraged. Most recently I was told that my financial situation was too complicated to enter into the computer, so I did not qualify for PASS (Program Attain Self Sufficiency). I had to choose between e=putting food on my table or publishing my books.
So there is no room in my life for those who refuse to acknowledge or belittle what it takes to live with this kind of pain. Or for those who, like my immediate relatives (click here), not only tell me to my face that my vulnerability is both their opportunity and their justification to kick me while I am down, but have actually done so repeatedly in the past and continue to do so whenever they have the chance. While I understand the dynamics of the dysfunctional narcissistic family and the role of the designated patient in maintaining that dysfunction, I don’t like it and there is no reason to voluntarily subject myself to it.
My preference is to engage with life, do those things I enjoy whenever I am able to, and eliminate as much outer stress from my life as possible (click here).
If you feel called to support me and my manifold projects, go ahead and buy my books.!
It becomes obvious that you don’t wish to be pandered to or necessarily want sympathy, but rather live a full life and participate. so Ill skip my emotional response to your condition, and say I really like your writing style and depth of conscious postings. It gives truth and force to your story telling, and that is refreshing.
Thanks for visiting my site as well, I will follow along and respond as the muse moves me to.
Wow! You are a wise young woman. I had to do the same… Just make my own pain scale, even tho not many are interested! “10” is having a baby! No, 10 is how happy you are to have the baby! Who has the same labor pain? And who has the same pain? What about MEN? And who has Ever had the pain scale explained in an understandable way? Not many hands. Sara…. I can’t wait to curl up and read your blog! Happy Days, thro pain and joy! Cathy
It is very tough to deal with chronic pain. My heart goes out to you. Bless your heart for what you do to overcome problems and help others.