This is extremely difficult to be open about. There is so much stigma associated with chronic pain. I even go through great lengths to not talk about my pain. Acknowledging it makes me feel embarrassed, awkward, and weak. I never speak about it even when I know it can be seen in my eyes. When asked I will always say I am doing great- always. But this is a part of my life and if it helps anyone, I’ll count this as a win.
It’s hard some days. Some days just breathing is excruciating. I have lived with my autoimmune disease for 15 years now and with my chronic pain for 8 years. To be honest, I thought it was a struggle to deal with when all I had to do was take care of myself. I relied on medication for the pain back then. Strong medication and hibernation with a ton of sleep is how I survived for a few years. Now I function with no meds and no time or opportunity to hibernate. During those years I thought I was killing it. I was. I had a handle on all of it. I was in control. I lived my life and the pain had minimal effect on my days, but the medication began to affect me in ways I did not anticipate.
I had respect for the medication: it’s power and effects. I knew I became a muted version of myself. I had enough sense about me to never take any medication while working: my job at the time was high intensity, high stress, and required all of my facilities plus some in order to care for the acutely injured and ill people put in my charge. My days off were usually spent in total hibernation with the medication as my best friend. Then I started to notice I craved the meds. Even if I didn’t feel a “bad pain day” coming on, I would take my medicine anyway just to make sure I didn’t have a bad day on my off day or so I was ensured to sleep through the night. I worked hard and deserved to enjoy my days off and to sleep through the night. I justified it all.
One day I became acutely aware of how much time I had lost in a medicated state. I couldn’t recall memories others brought up. I would count my meds to see how I had to regulate use til my next refill. I noticed signs of addiction. No one sets out to abuse medication or wants to become an addict. Most people just want to treat their pain so they can live in normalcy. I was afraid I would start talking myself into taking half doses before work or on days when I knew would be a struggle emotionally or physically BEFORE I noticed any signs of pain. I was afraid my pain management would begin to bleed into other areas of my life and possibly hurt someone I love or someone else’s loved one. All of a sudden I became terrified to be swallowed up by something I couldn’t control anymore.
I took myself off of all my pain medication about 2 years before Henry was born. It was an easy decision for me to make. I started to research long term effects of opioids and other pain medication only to find that there were no definitive long term studies. Through my search I found the possibility of severe liver damage, permanent brain damage due to repeated induced hypoxia, and maybe alterations of the adrenal system. No doctor could tell me the absolute long term effects of the highly addictive meds I was on or ever told me any adverse effects besides constipation and drowsiness. Is it because they didn’t know? Is it because there was no alternative? Is it because of the money? I’m not sure, but I did realize that just because it was prescribed to me by a doctor did NOT mean it was safe to ingest for years on end. This was before the opioid epidemic really hit the news. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466038/
America is land where there is indeed a pill for every ill. You can fix anything with a pill. Commercials abound and implore you to ask your doctor. All you have to do is go ask a doctor. No? Another doctor. Keep at it and someone somewhere will prescribe you something. It’s remarkable. This system we find ourselves in is very much a consumer-based system and yet it still costs outrageous amounts. (The little topic of cost has to wait this time.) Getting large quantities is easy too- you could get 90 days worth of generic meds delivered to your door! What a deal, right!? The opportunity for abuse was easy. New regulations have put the brakes on some of that.
Going through advanced practitioner training, one of the first things I learned is that everyone expects a prescription and most doctors do prescribe. Why? Their scores depend on it: consumer reports and satisfaction ratings. How do they decide what to prescribe? Pharmaceutical representatives present all the information they need to know in a nice, neat little handout at a fancy dinner. Most don’t look past the pamphlet. There’s little time when caring for the masses to research every single medication on the market. The drug companies make sure everything is safe right? Safe for long term use? Maybe not. That is when I thought maybe I should start looking harder and expecting more than the toxic options before me.
The final decision maker for me was watching my grandmother become lost in her own mind as a result of years of quietly over medicating herself for pain and depression after my grandfather passed away. We discovered too late how much she had been medicating herself. She was a woman of unbelievable strength, but she was defeated by the medication that was supposed to help her live without pain, anxiety, or depression. Before his passing she was whole. She lit up a room with her infectious laughter and zest for life. She would be the most elegant woman in the room charming everyone and then put on overalls and clear a field in the same day with her lipstick still in place. She was amazing. I can’t remember all the exact psychiatric, neurologic, and physiologic diagnosis she ended up with in her chart as a result of years of combining over a dozen different sleep aides, anxiety and depression medications, and pain medications. I do remember how lost she looked and how many years she struggled in her own mind and body when she should have been enjoying her retirement years.
One of the last coherent statements I recall my grandmother making was several years before she passed away… before her eyes glazed and lost their light. She looked at us through tears pointing at a photo of my grandfather and said she’d been robbed of her life. It’s true. My grandfather’s departure from this earth at the young age of 60 did rob her of her life: he was her heart. But in her last words, I realized something else. The medication robbed her too. She was not actively present in her own mind for the last 5 years of her life… and reflecting back she was not completely herself for the last 10- 15 years. She suffered profoundly. It then became so very clear.
I witnessed the agony and ugliness of premature pharmaceutical-assisted decay of the mind. I will never forget the desperation in her eyes as she tried to grasp moments before her or the defeat when she couldn’t call us by name or put together a thought. I can’t live that way and I won’t. Everyone’s situation is different and everyone functions differently, but as for me: I cannot live halfway present now. And I refuse to submit to premature loss of function and capacity in my prime years. I saw too much dependency in myself on medications that can have devastating long term effects on my brain and body. I see in my blood and past behavior the predisposition for addiction to pain medication and the inability to self regulate. And so I don’t take any opioid medication or other medication prescribed for pain.
Do I have pain sometimes? Yes. So much. Sometimes every breath I draw brings me extreme stabbing pains making it difficult to stand upright. Sometimes it’s a constant dull throb in my chest cavity around my lungs. It’s worse with barometric pressure changes. Alabama summers can be rough for me. And after illnesses like pneumonia like I experienced last week, it is especially painful. But the days of unbearable pain for me are few. I can bare almost all of it and function pretty well with alternative pain relief. I manage with breathing and stretching exercises, essential oils, steamy showers, sleeping with lowered temperatures, herbal teas, NSAID treatment when I’m not pregnant, and the occasional glass of red wine at night when I am not growing a tiny human. (I do miss having a glass right now, but the little nugget in my womb is worth it and more.) Until there are more safe options for pain management than opioids and what is currently available on the market this will be my life.
Why would I choose to live with the pain instead of the medicine? I want to remember these days. I want to remember my young family growing. My sons’ making their first words and steps. Laughter. Smiles. Cries. Frowns. I want to be actively present for my family to celebrate our victories and sooth our bad days. I want to be a wife and mother who is here completely and unaltered. I don’t want to permanently alter the function of my nervous system and brain on substances that have the same effects as heroin. I won’t even mention the possibility of overdose. https://www.drugabuse.gov/about-nida/legislative-activities/testimony-to-congress/2016/americas-addiction-to-opioids-heroin-prescription-drug-abuse
I don’t want to spend my last years trapped in my mind. I can’t get lost in this. Some days I struggle with pain, but I can’t sacrifice any time being dulled or numbing out. I want to be present all the days of my life and enjoy every minute I can even if that means living with discomfort. I need to be completely here for my boys now and in the future. I want them to see me; not a shell of their mother. I want to live; not wither and die prematurely due to medication.
There is no easy way to function with pain. Options are limited. It can be hard. Everyone does what is best for them at the time. I live now by pushing through with more natural treatments so I can clearly see, feel, and react for me and for my family.