Pain is exhausting and crippling and soul destroying.
I’m not talking about “I had a backache once and had to miss two days of work” or “sometimes my back goes out” – and I’m not talking about it being a manifestation of some emotional problem (though pain can cause depression and visa versa) – I’m talking about deep seated, never ending – searing, throbbing, shocking, loss of breath pain that never ever goes away. Pain that sucks your very soul from you – that isolates you from life and other people, that is only understood by people who also have chronic pain.
Its incredibly lonely, and worse – its terrible when people think you look fine and you should just suck it up – everyone’s got problems after all. True, everyone has problems, and the older you get the more problems you have. But a lot of people have pain like this for a few months and then have surgery and go back to golfing or traveling or whatever they do – they have a limit to that agonizing state. While those of us who will never find relief have to learn coping strategies and rely on a lot of different medications and therapies to lead close to normal lives.
Friends don’t understand why you can’t go for a hike, play ping pong, dance… they don’t understand why some days you can’t even talk on the phone… They don’t understand the sacrifices you have to make to go out to dinner, socialize, have people over… how hard it is to do laundry, stand in the kitchen, vacuum, go grocery shopping, go for long drives, and on and on…
Everything you take for granted as a normally able person changes forever with chronic pain.
“This isn’t a pissing match” – a friend said to me a few years ago when I was trying to tell her that I’ve been living with chronic pain for more than 17 years. Did she think I was trying to outdo her problems? The fact is that its the truth – its no exaggeration – it isn’t a pissing match… I have been suffering.
In all those years I’ve only experienced 15 minutes free of pain. Really.
It was just after a nerve root block that I had several years ago – those 15 minutes were the transitory result of the numbing injection that they put into the site near my spinal chord to prepare the area for the real injection that followed a few minutes later. When those lovely few moments wore off I had severe pain and sickness from the invasive nature of the injection (going through inches of tissue and into the sciatic nerve) and that sickness usually lasted close to two weeks. Then if I was lucky, the nerve root block might work for a few short weeks.
That type of injection, a nerve root block, required the doctor to test the nerve with the tip of the needle before finally injecting the steroid. First they’d put the numbing agent in by needle, then a dye through the same spot, and then finally inject the steroid.
During this process, I had to wait til the pain went from my spine (where the needle was placed), down to my butt. Then the pain had to travel down my leg to my toes. When it hit my toes I had to tell the doctor and he would then release the magic burning serum into my nerve. One time they spent 30 minutes repeatedly stabbing the nerve, trying to get it to react that way – 30 minutes of torture – and they never managed to find the sweet spot. I went home sick in pain for a month after that attempt. It took a lot of courage (and desperation) to go back for another try…
I’ve had several different kinds of injections over the years. Right now, we think we’ve got one that works – a spinal epidural – which I’ve had a few times with only a week down afterwards, and sometimes I even get several weeks of relief.
Often, I get injections into both sides of my spine one week apart – that means two weeks sick in bed. I get sick – other people don’t; its just the way my nervous system and body react to the needle going so deep I guess. Everything gets inflamed, angry, and sick. One physiotherapist told me that I had a hypersensitive nervous system (a real medical condition) which is why I have so much trouble with pain and the ensuing physical response that my body naturally goes into.
It seems that I also have some bad osteoarthritis on my right facet at L3 (I think its perhaps from when I fell flat on my back directly at L3, onto a sharp, slippery marble ledge in a Turkish hammam when I was 24). The facet is so distorted that the doctors performing the injections often have to redo the initial injection site to get the needle in past the bone and deep enough to the intended site. This has resulted in sometimes having the needle scrape along the bone (done intentionally) to find the right spot. Lately the doctors I’ve been seeing have it down to a system and know where to go to avoid that… but there have been numerous tortuous episodes over the years.
To get relief. That elusive goal.
To have the level of pain reduced to a minimum, just so you can function on some level.
Pain robs you of everything. It takes away your physical ability to do everything. It blurs your sight, numbs your mind, exhausts you, causes you to be clumsy (I broke my hand by slamming it under the kitchen counter during one particularly clumsy day). When its bad I drop things repeatedly, and cut myself in the kitchen doing mundane tasks.
In the past 17 years I’ve been to numerous physiotherapists, GPs, massage therapists, naturopaths, chiropractors, healing energy specialists, meditation specialists, chronic pain specialists, back surgeons, sports medicine specialists – you name it. When you are desperate you can, and will, try anything. My husband is very loving, and patient and supportive – whenever I feel like giving up – he tells me we’ll find a way – there has to be a way.
And he was right. I still have chronic pain but I have a team of people now that really do help me and keep me going. A great GP who seems to understand pain in a way even many of the pain specialists don’t seem to – I’ve been seeing him for about 4 years. And he is the only doctor to successfully give me medications to quiet the pain without drugging me into a state of torpor. Up til 4 years ago I had very little help with pain management – only one doctor 5 years ago gave me the medication Tramacet – it was a God send. Before the Tramacet I was taking between 10 and 14 Advil a day which wreaked havoc with my digestive tract.
Also around 5 years ago I found a wonderful chiropractor – a NUCCA specialist. He did several Xrays of my head and neck that first day and then studied them. Working directly on the films he took accurate measurements, drew the angles of misalignment particular to me, and interpreted the information. When he adjusted me that first time – it was the first time in decades that I stood straight. I cried.
It was the beginning of the healing of my spine – the correction of years of distortion from an early injury when my skull was knocked several degrees off center – the result of a horse riding accident from when I was 16. Over the course of the years the weight of the misaligned skull forced gravity to deform my lower spine to compensate.
Before I found the NUCCA doctor, one of my physiotherapists would have to manually push my pelvis into position on the right side – it would go out by up to 3″; all the muscles pulling my right leg up into the distorted pelvic joint. I was on my way to becoming a Quasimodo – my spine and body so contorted that everything hurt all the time.
With these two doctors I’ve been able to, over the past 5 years, regain some of my health and myself. I am even at a point now where I have been able to exercise with free weights – something I haven’t been able to do in years.
All through my late teens, my twenties and thirties I suffered from a range of strange symptoms that seemed unrelated. I went to doctors with locked hips, headaches, a frozen shoulder, a deep pain in my thigh, ankle pain, knees that gave out, back aches. No one ever connected the dots, not until my NUCCA guy asked me to write out a full history of my health including every injury, pain, and illness back to my birth. He was the first truly wholistic doctor to look at my life and health all together.
When it was written out it was easy to see the source of everything – all my problems were spinal – and all were related to one specific incident – but no one up til that point had ever connected the dots. Even with severe headaches and pain deep in my thigh in my early twenties no doctor ever considered the cause was spinal – they saw me as a young healthy active person and didn’t take me seriously.
My spine gave out about 17 years ago when I blew out one of my discs in a kick boxing class during a lateral kick. The pain was sharp, intense and took my breath away… I couldn’t walk for weeks. But it took 12 years to find a doctor to diagnose it. No one took my pain seriously – in fact my GP at the time told me I was a depressed housewife and prescribed anti depressants which did nothing.
Several years later I was at a very low point with all of this. I was sent to a pain clinic where I was put on a regimen of no movement for weeks – I was only allowed to sit, stand, or walk 10 minutes out of every hour (one activity per hour)- the rest of the time I was to lie down.
It was soul destroying.
It was physically destroying – I lost all my muscle tone and became totally incapacitated.
I lost myself.
It was so incapacitating that I could not see a future for myself – I had to give up everything – everything. To keep life going as normally as I could, I focused all the ability I had left into caring for my aging mother, my children and husband. But I had to give up being a physical human being. I wanted to die – not that I ever considered ending my life, but I wanted it to just end.
My husband took me that Summer to a Sting and Annie Lennox concert even though I didn’t think I could manage getting there or even manage being there. There were so many hurdles to get through… taking a moving, lurching train that would cause white-hot knives of pain to stab my spine and legs; walking miles to the venue with electric shocks in my hip and lower back; standing in line with my twisted aching spine; sitting or standing for hours and not being able to lie down for any kind of relief…
But when Annie Lennox came out and sang she filled me with strength and resolve and a passion for life. She is such a commanding presence – so powerful – so full of grace – her voice picked me up and inspired me to keep going. It sounds hokey I know, but music can be transformative and Annie Lennox transformed me that night.
My pain didn’t go away but I was inspired to keep going and keep hoping to find a way to live a full life again.
It did take years to find my current doctor and my NUCCA chiropractor, but I did find them. It took years of trying different pain medications and injections, but I now have what works for me.
My spine is stabilizing after being damaged more than 40 years ago. I’m managing the pain better now with meds and meditation and stretching and an intimate knowledge of my limitations. I can go to a movie and dinner now – knowing that I have to rest a few days before and a few days after… I can go for lunch with a friend – knowing I can only sit for a couple of hours and that it will take a few days to feel better… I can go to the mall – knowing that if I overdue it I will pay for it in days of inability… but I can have a life again.
I am not over dramatising this – ask my husband or children who have lived with me through all of this and know the reality.
It wasn’t until I was able to see a future for myself, once I was able to stop grieving my losses, once I had some stability in my spine, that I was able to BE again – and my life started to improve.
There have been times that I have really wanted to just lie down and give up. But I am a stubborn person and I am fundamentally a positive person – I believe in myself. I pick myself up everyday; I am my own cheerleader; I am the only one who is truly responsible for me.
I’ve always had the joy and love of my family, and the gift of laughter. And I’ve always had a deep appreciation for beauty – whether its through the arts or nature – so that I have always filled myself deep with that.
Life is beautiful despite the horrors and the suffering around us – its my reason for living and striving and being. If I ever lose that belief, I think I would truly lose everything.
Beauty can be found everywhere – in smiles, in trees, in animals, in bees, in the curve of your favorite armchair – look for it in your life and fill yourself with it – it helps make all the pain so much more bearable.