I have usually talked about my experience of living with chronic pain in passing during the three hundred and fifty posts that I have previously written. However, today I thought I would shed some light on what it is like living with chronic pain from my own personal experience.
Living with chronic pain is like attempting to function through a torrential storm. A mighty and ferocious storm that wreaks havoc and destroys everything in its sight.
The excruciating pain is limited to my upper and lower limbs, although the pain in my legs is often much worse. The pain is unimaginable; a crushing sensation, as if they are leg caught in a vice which is only getting tighter and tighter. Every step hurts, each step bringing stinging tears to the eyes.
At other times, the pain feels like an extremely unpleasant cold sensation radiating throughout my entire legs; the cold that seeps down right into the bone, feeling frozen and if will snap in half.
It is crippling and unrelenting causing a massive red stop sign to appear in my track; unable to do anything else but think about and feel the intense, uncomfortable pain. Distractions, anything to divert the pain away from the thoughts inside the brain, but nothing works.
Pain consumes everything; a storm that is so powerful and savage causing flash floods. Rough waves pulling at the body, dragging you under, consuming you. And living with constant pain feels like that, it drags you under to the depths of despair. It is all-consuming and relentless.
Living with constant pain is exhausting.
If fatigue weren’t already a side-effect of living with a neurological condition, then the pain would be the cause. Dealing with pain every day is draining, each night laying there all alone with nothing but the pain for company is mentally exhausting. The lack of sleep and fatigue accompanies the pain, following you around after the exhaustive, restless nights. In the chronic illness community, we have a word for this – painsomnia.
Often, as the lack of sleep overwhelms everything else, a nap becomes necessary. But no matter how much sleep we, it is never enough. Sleep never eradicates fatigue. A vicious cycle of sleeping during the day and not being able to sleep at night which is seemingly impossible to break.
Each morning promises to be a clean slate, a new beginning of hope and promise but for those like me battling chronic pain, each new morning starts instead with the shock of crippling and debilitating pain.
It is a constant companion, one who dictates how our day will go and what we can do with our day. We speculate when the next ‘storm’ will impact, although very often these waves continuously crash, pulling us under, our bodies being slammed from every side by the violent waters.
The emotional side effects of living with chronic pain can be just as soul-destroying as dealing with the physical aspects of our conditions.
Pain can make us feel incredibly lonely.
Pain is invisible, and as such nobody ever knows just how much pain we are in, we are expected to participate in society even when we are consumed with the pain. We don’t want to say no or cancel plans we have made, but it feels as if we are being held hostage by the pain and as such we are forced to stay at home, clinging to a raft trying not to be sucked under and sink. Chronic pain and chronic illness shrink your world until you spend your days staring at the same four walls, like Rapunzel trapped inside her ivory tower.
Lonely as we struggle with the painsomnia; lying awake in bed, the pain draining our ability to sleep, alone with only the pain and our thoughts (usually about the pain) for company. We can be in the company of others, a roomful of people and still feel alone; the pain louder than any conversations happening in the same room.
There are times when the pain wins; days when we are worn down by the pain. Days when we don’t do anything besides lie and think about the pain, feeling defined merely by the pain. Pain has a way of making you feel stranded in the middle of nowhere with no roadmap or compass in sight to help you find your way.
Many of us are never without pain, but regardless most days we soldier on despite the pain; we push through the intense discomfort. Despite the constant affliction of pain we continue to hope for better tomorrows. We cling hard to a raft during the torrential storms until it passes and sunshine and rainbows appear overheard once again.
The storm of living with chronic pain cannot be stopped, it is a storm that can only be weathered. The only thing to do when the storm hits is to seek shelter, prevent damage, survive and stay as comfortable as possible while the storm is raging. We embrace self-management techniques; tools that we have built up over time into our very own ‘toolbox’ of strategies that help us manage our chronic pain. Techniques which include strategies such as pacing, relaxation skills, and diet and exercise.
And eventually, the storm subsides, and we breathe a big sigh of relief that it’s over, while also waiting with baited breath for the next storm to arrive…
20 thoughts on “Surviving the Storm of Chronic Pain”
As always, you so eloquently describe what it is like living in constant pain. I cried as I read this entry. For me, there are no meds that I can take for it, as in NSADS, Narcotics, although I do take Lyrica and Cymbalta for the Fibromyalgia pain. I took SO many NSADS prior that I now added Ulcerative Colitis to my mix. My illnesses, all invisible, have fallen like a stack of Dominos… I love reading your words. They are profound to be sure! Xxx
Thank you for sharing this! It is so difficult to live in constant pain and still maintain a normal life. I am sorry for what you deal with. I live with pain because of Multiple Sclerosis. I was diagnosed 16 years ago but, I am still trying to see the positive in life. I will admit, it is hard some days. I have been able to connect with so many people through this blog that really understand and it has been so helpful. I have set a goal for myself that I will achieve because I am stubborn and determined. I am going to one post every day for at least one month! I hope if you choose to follow my blog, you will enjoy! I look forward to more of your posts! Take care!
I don’t know how you do it, you must be incredibly strong willed. Thanks for sharing. A lovely well written post.
I can feel your pain. Literally. You brilliantly captured how many of us feel and experience on a daily basis. I struggle with all of these same things – pain, sleeplessness, fatigue, loneliness – from my years of Fibromyalgia. Gentle hugs and hope you have a brighter day today!
Wow! Reading this was powerful, gut-wrenching and leaves me speechless. I can only say that I hope you get to experiences a respite and some sunshine soon. Hang in there!
Thanks for sharing your story. I live in Chronic pain, it can really wear me down at times. This new War on opioids is making things harder. I believe in the gospel of Jesus Christ. I believe that God has his hand on whatever happens to me. I have cervical stenosis, spinal stenosis, sciatica, DDD and last year I had scoliosis added to that. One day at a time, God is still good, Amen!!
Incredibly well-written and powerful post. I particularly love the analogy of the storm.
So well written. Living with chronic pain has such a huge impact on all aspects of everyday life, and you really capture that here. As you say, the emotional side of it all is just as difficult as the physical. Thanks for writing this.
The storm analogy works perfectly. Hope your good days out number the bad.
Such an incredibly honest and open post for you to write. So beautifully written too. So powerful. I agree the emotional side is incredibly difficult too. Sometimes even worse in my experience. Hoping you can cope somewhat with this pain and battle through. You are strong 🙂 xx Imogen
Wish I didn’t know how absolutely spot on your writing is about chronic pain. Really accurate and powerful piece. I just wish there was a way that others around us could a) know we are in pain and struggling and b) be able to know what it feels like and how hard we are battling all the time.
Thank you for sharing
I also suffer from chronic pain and wrote my dissertation on chronic pain in women using non-pharma methods. Keep up the faith
While reading this for a moment I thought you were talking about me. I love the way you expressively describe what pain is. I’ve experienced everything you mention plus more. You are right it is a very lonely place for us. Only the person dealing with pain can really feel the aftermath. My dear husband tells me every day, he wishes he can take the pain for me. He can’t even begin to understand what goes on in my head at any given moment.
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The way you describe your pain experince and how it impacts you really resonates with me. You are an incredibly eloquent writer. Your blog is fantastic, so glad I found it.
[…] can have, and as I read further to even help manage chronic pain, which something I have been struggling with for some time now. This is supported by much research which has shown that patients with chronic conditions […]
I appreciate your post. Your descriptions really bring it to life. I have chronic pain also and have endure lots of what you describe. I just wanted to encourage you to continue on.
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I am definitely going to use painsomnia from now on. I hadn’t heard about it before I read your blog post. Another great post ❤️!
Thankyou for sharing such a well written piece. I struggle to explain life with pain, but this here is it! 💛⚡️