Living with Chronic Pain

I live with chronic pain. I have lived with pain since I was about 11 years old, when scoliosis began to warp and constrict my spine. I had my first spinal fusion surgery at age 16, and never imagined I would have any more issues with my back after that. No one knew, or let-alone could warn me that there would be problems in my future, there is still so little hard evidence about scoliosis or it's causes, so I don't blame the medical community, if anything they saved my life in 1988. Had I not had the first fusion my spine was on a direct course with my heart or lung; so the fusion was a reprieve and a gift. I do not regret having it done.

And yet the fallout is only really becoming quantifiable now in my 40's. Add to the scoliosis a host of other spinal diseases and conditions, among which is now a broken thoracic vertebrae and metal rod, and bones worn to the nub by friction by simply walking without knowing what was happening, and you find me here; sitting in my pyjamas at 11:30 am, tears rolling down my cheeks feeling utterly desolate.

Again.

This is what it is to live with chronic pain, and while I am tired and sore and weak, and want nothing more than to crawl into my bed and sleep for a few hours, I need to get some of these thoughts out into the open, to share what it is to live in pain, so that maybe I won't feel so damned isolated by it for a few minutes.

In addition to my spinal diseases I also have fibromyalgia, which is a mystery to many, a stigmatized condition in the medical community looked upon as a hoax by many, and by others still seen as a by-product of misfiring nerves. I am the typical fibro patient; with chronic fatigue syndrome as well as the mind numbing pain in my arms, legs, neck and shoulders. Nerve pain is hard to explain to someone who has never experienced it, as it isn't' quite like a fire, nor is it like ice. It's something of a mixture, radiating from heat to icy cold, causing your limbs to feel deadened by forty pounds of electrically charged meat.

The usual symptoms that accompany fibro are all par for the course in my daily life, the nausea, brain fog, dizzy spells. And while medication can help with the chronic pain of the nerves misfiring it is only a bandaid on a broken limb.

My pain has gotten so much worse in the last five years; until then it was something I had lived with as graciously as I could. I rarely complained about it, as I figured it was my burden and no body wanted to hear me whimpering about it. I also figured my weight was a catalyst, so it was "my fault" in essence for being overweight, and if I weren't so slovenly and lazy maybe I wouldn't hurt so much. I know that isn't the case, that my weight is the result of my physical issues and not the cause of them, and yet the stigma is there. You cannot go out in public as an overweight person using a cane or walker without seeing it in the eyes of strangers; the world we live in is conditioned to look down upon those who are overweight. This adds to my physical pain, and becomes a pain in my psyche. And that pain has no pill.

Anyone who lives with chronic pain knows how isolating it becomes; you begin to have pain, and you make accommodations in your life, and begin to pro-actively find solutions. You go from this specialist to that specialist and as weeks transform into months, and years, you become tired, and even at times angry and jaded as you realize no one really knows what is wrong with you, they just want to push whatever big pharmaceutical fix they are funded by. The isolation you begin to feel can be just as painful as the physical pain you live with, as you realize no one really understands how you feel, why you feel it, and the only people who truly give a crap about helping you feel better are the ones who watch you struggle every day; your friends and family.

I am blessed that my husband is so patient, and he himself has spinal issues and is on pain medication for chronic pain; he gets it. My daughter has scoliosis now too, and while it seems to be less progressive than mine, it causes me concern and worry; I do not want to hand this legacy of pain and introversion to her.

Pain has become the focal point of my life. The first thing I do when I wake up is take my pain meds. And the rest of the day is then planned in my mind around each impending dose for the day.

I had my second spinal surgery this past January, and had put all of my hope so naively in it. I just knew it would fix the problems I had been having, and life would get back to "normal" again. I was so wrong. Since January I have become more jaded, emotional and insecure about my physical condition. As with all people suffering chronic pain, I play the role of multiple-personality disorder patient; on good days I smile and laugh and even get up and run the broom over the floor, or wash a few dishes. On a bad day I sleep, and sleep some more, because the pain is just too much to be awake through. My house is in shambles, which makes me feel guilty, and my life as it were is spent in my apartment, accommodating pain on the couch or in my bed. On an extremely bad day, like today, as the tears run down my face I punish myself with the knowledge that I am  an inactive parent, unable to walk through the mall with my teenager, barely able to do anything beyond sit with her and talk. I am not much more than a burden to my husband, unable to spend the time on my personal appearance I once did; as it hurts to hold the hair dryer to my head, as my arms are so nerve damaged after the paralysis I experienced in my last surgery. I seldom wear clothing these days, as pyjamas are more comfortable and easier to put on. And if by some glorious set of events I am able to leave the house for a short while, I have a big pillow to sit upon in the car, and my walker is ready to travel, yet it is so difficult to endure the confinement of the car for long, so I generally try to avoid it now.

And that is what chronic pain is really about; the slow and steady descent towards avoidance.

You learn over the months and years what your triggers are, what the consequences are for running the vacuum, or cleaning the bathtub; you realize just how much it takes out of you to sit in the park on a metal bench or try to walk the dog down the sidewalk. So you just start to avoid those things which cause your pain to flare worse; its easier to avoid, and deal with the regular pain. Regular pain is enough. I can wake up feeling as though I went 8 rounds with Holyfield, imagine how I feel after doing something other than sleeping? And don't get me started on sleep - my love/hate relationship with sleep is epic, and I can go for days without sleep because the pain is so acute, and then pass out for 18 hours straight.

I wish the world were more understanding of those of us who are in pain. It's often an invisible disability for many, and the scrutiny of family and friends who don't get it can be crippling emotionally. Mind over matter only applies to my emotional state of being, not my pain - as much as I've tried to meditate and smile and positive think the pain away it just won't abate. And while I am fairly good at staying upbeat and happy, I am human, and I am finding it harder and harder to maintain grace for any period of time these days.

Pain is slowly syphoning my strength from me, and I have these bizarre moments of panic where I worry that I will become an empty shell of a person.

One of the worst things about living with constant pain is how the people who care about you treat you sometimes. The last thing I want is to see pity in your eyes, and yet so often I see it from the very people who know me the best, and that is so hard for me to handle. I don't want anyone to feel sorry for me, I just want to be understood. I need the world to accept me as I am now, and know that I am terrified that I will never know what it is like to not feel this way again. I am 15 days away from my next spinal surgery, and this ones going to be a doozy; and I am horrified, petrified, and absolutely downright scared out of my mind. The last time I woke up in the recovery room just a few months ago I couldn't feel or move my arms. I worry this will happen again, and the probability is pretty high. I worry about recovery, coming home, letting my daughter and husband down. I worry that my diseased spine is just so compromised at this time in my life that no amount of shoring it up with metal rods will help. I worry that I will eventually end up in a wheel chair.

Most of all - like everyone living with chronic pain - I worry that the best days of my life are done and over.

On a good day I'll smile, and tell you I'm ok. And I won't bother you with the details of how I can feel the break in my spine with each inhalation of breath, and how it feels like someone wearing an iron glove is squeezing my spine for all it's worth. I won't bore you with the details of nerve pain, and how my arms and legs feel as though they have electricity running through them that jolts at each move. I won't even bother talking about my lower spine, or my hips, or sacroiliac joints. On a good day i shove all of that deep inside of me and try to smile, and accommodate, and be pleasant and kind and patient. And the reason I do that is because I know I'll soon have another bad day, and on these bad days, I fear I will end up alienating anyone who still has any amount of compassion for me, because I just can't bother playing politics and end up blurting out things in a less than tactful manner; pain has robbed me of my ability to pretend at politeness.

On a bad day I will have a very hard time not letting the tears slide down my cheeks as my body rebels against every motion I make, and my hips grind and my neck stoops and I cannot lift my head to look up for the pain in my shoulders and arms. And on the next bad day I can't guarantee I won't feel depressed and likely to hole up in my bedroom crying all day, because i just feel so damned all alone and afraid.

I'm 41 years old, with the spine of a woman in her 70s or 80s. I do my best, but that isn't that great anymore, and if this next surgery doesn't help I don't know what that means for me or my future. But I'm afraid, and I feel alone and embarrassed. And I just needed to let this out, because I know I'm not the only person on earth living like this, and maybe just writing this will help me to feel free from it to some degree today.

Until the next bad day.

If you're still reading, thank you for sticking it out. I'm sure it hasn't been pleasant. Try not to judge me too harshly, you really would need to walk a mile in my shoes to know what my life is like. And I honestly wouldn't wish that on anybody.