By Katie Burge, Guest Columnist
My day usually begins around 3 a.m., whether I want it to or not. No matter what time I went to bed or how tired I am, I wake up in those pre-dawn hours, overwhelmed by excruciating pain and trembling from a panic attack caused by the pain. I wake up because I hurt too bad to stay asleep.
Don’t get me wrong. I’m happy enough just to wake up at all – but what I wouldn’t give some time to actually get a good night’s sleep.
I grab a cup of coffee and debate whether or not I can “afford” to take a pain pill that will give me some modicum of relief. I have to be extremely careful with my medication. I can’t just take a dose because I’m in agony and need it. I don’t get enough to allow myself that luxury. My monthly prescription for pain medication allows me to survive semi-comfortably for just over half the month.
It feels like I’m on an evil roller coaster ride, where my pain levels off for 3 or 4 hours, then spikes exponentially over the next few hours until I can take another dose.
As my day progresses, I try to choose the optimum time to take my pain medication, depending on what I need (or attempt) to accomplish for the day. I struggle to take a shower, do the dishes or fix something to eat. Some of my time is spent writing.
One of the most important things in my life right now is advocating for better treatment for all chronic pain patients. I would like to be physically able to go to the state capitol or even to Washington DC to lobby for more compassionate treatment and to convince the bureaucrats there that pain patients are not to blame for the “opioid epidemic.”
But that will have to wait until I can get my own pain reliably controlled.
When I do sleep, I dream about being able to do theater again, travel somewhere other than to a doctor’s appointment or to run — do any of a hundred things I’d like to do if I could exist away from the recliner that I essentially live in. It’s the only place where I can find some degree of comfort.
For the past 20 years I have been dealing with increasingly severe chronic pain from a plethora of conditions like degenerative disc disease, failed back syndrome, spinal stenosis, spondylolisthesis, osteoarthritis, myofascial pain syndrome and fibromyalgia.
Any one of these conditions can generate enough pain to make a grown man cry like a little girl. Combined, they can transform a normally relaxing shower into a study in torture — where the droplets of water hitting my skin feel like daggers.
Over the years, I think I’ve tried every treatment offered by medical science, as well as many alternative treatments – anything that might have the potential to take my pain down a notch or two. Once, I even started studying medical texts, trying to gain enough of an understanding of the logistics of pain that I could design a visualization exercise that would help me control it.
I never wanted to end up taking opioids. The pain medication I take is what’s known as a “short-acting” or “immediate release” opioid, a type of drug that’s actually designed for temporary acute pain, not round-the-clock chronic pain like I have.
Unfortunately, doctors are afraid to use the extended release medications that were actually designed for continuous pain. This is the result of legal and political pressure from politicians who think they can solve the opioid epidemic by torturing pain patients. Somehow, they believe they can keep recreational drug users from overdosing by denying pain sufferers the legitimate medical use of opioids.
Short-acting opioids offer pain relief for a period of about four hours. I am expected to make it a full 8 hours inbetween doses. That’s where the evil roller coaster comes in. I take my medication, which gives me up to 4 hours relief, and then the pain spikes over the next 4 hours — making me feel worse than I did to start with.
It’s up and down, up and down all day long and it’s exhausting! If I was allowed to take the medication as it was made to be taken (every 4 hours), it would afford me more enough pain control that I could build a more normal life for myself. Doctors used to say it was safer and better that way, but that was before they became so afraid.
When it starts getting dark each day, I can feel the panic rising in my chest because soon it will be time to sleep and that means more pain. The depression and shame tend to crop up when it gets dark as well. The depression comes from being so isolated. As a person in pain, you spend a lot of time alone.
The shame comes from just being in pain in the first place, as society seems to tell us that we should be able to control our pain mentally, without medical or pharmaceutical intervention.
This is my day… EVERYDAY.
It’s starting to get dark now, and the panic is boiling up again.
Katie Burge lives in Mississippi.
Pain News Network invites other readers to share their stories with us. Send them to firstname.lastname@example.org.
The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.
Link to original article: https://www.painnewsnetwork.org/stories/2019/10/17/a-day-in-the-life-of-a-chronic-pain-sufferer
Tags: exhausting, chronic pain, day