A few days ago my hubby and I were walking in the beautiful winter sunshine when he asked me how my back was. That’s because he’s both very considerate and knows I’ve suffered back pain for a number of years now.
I’ve also endured pain in my neck, shoulder and head for over 30 years—due to a long-term condition called Spasmodic Torticollis (ST). ST is a strain of a lesser-known neurological disease called Dystonia, with symptoms akin to those experienced in Parkinson’s disease.
Please keep reading! I’m not seeking sympathy in this post. I just want to share my experiences and coping mechanisms in the hope I may be able to pass on some tips to anyone out there suffering from long-term pain.
When all my troubles began I was initially treated for depression, even though I wasn’t depressed. I had physical symptoms but, because my then doctor didn’t recognize them, he kept throwing more pills at me. To the point where I was taking 24 tablets a day!
At the time I had three young children, and eventually realized that, due to the medications, I was no longer the person I was before I started down that route. So, one day, I scooped up all the bottles of pills and flushed them down the toilet.
That was how we disposed of unused medication in those days—though now, of course, would be frowned upon as not a safe thing to do (polluting our water system etc.). We also now know that, when you come off certain types of medications—if not all—you should do so gradually. Wean yourself off under control so as to minimize withdrawal effects.
I survived, however, and slowly returned to being the person I knew as ‘me’, even if the physical symptoms remained.
After moving to a new area and changing doctors, I was referred to a neurologist – following a mental health assessment – after which I was declared ‘normal’. Whatever that is!
Following many hospital visits and trying ‘alternative’ treatments over the ensuing years—while running a full-time business with my hubby and bringing up our children—I began to realize that the pain I lived with on a daily basis was now a part of my life… and here to stay.
I’d long-since forgotten what it felt like to be pain-free. And, as ridiculous as it sounds, I actually thought I’d miss it if it wasn’t there!
To aid my plight, I found a support group for people struggling with the same condition – and eventually became Chair. I’m not a fan of small groups, so amalgamated three into one as I found it easier to attract good speakers to a larger audience.
We addressed and resolved issues such as people struggling to get their treatment on time. And also helped them see it was they who were ultimately responsible for managing their condition.
It is still possible to have a good quality of life when going toe-to-toe on a daily basis with pain. But it’s up to us to embrace the situation—and believe we can dance with it.
Help is out there, for sure. But you also have to source and access that help—put simply: ask for it—as it won’t come looking for you.
I know from personal experience how hard that is to do. But accepting the pain and embracing it is the first step in making it a positive part of your life—and also puts you back in control.
I’ve had major surgery on my neck, followed by several years of physiotherapy support; a spinal fusion on my lower back; and latterly have been diagnosed with arthritis. All of which have left me with a cumulative amount of residual pain.
I am, though, very lucky to have the love and support of my husband and family—and try not to ‘moan’ too much… even if sometimes it’s very hard not to!
However, because I’ve lived with pain for so long now, I’ve learnt the best way to cope is to embrace it and treat it like a ‘friend’. As much as we’d like it to, it’s not going away. It may ease for a while—before, invariably, returning with a vengeance! And so, making friends with it is an effective way to venture forth.
Treating pain with a positive attitude definitely makes it easier to bear. Plus, that way, when I wake up each morning it just feels normal to me. It might take me a while to get going. But I don’t look upon it as a negative—just a part of my day.
I do take a nominal amount of painkillers when needed—but nothing like the number I’ve been prescribed. So I’m in control of that, too. I want to enjoy life, pain-‘n’-all, and not be in conflict with it. Medication can mask the pain temporarily, but is never a permanent fix.
Diet can also play a part in helping with pain, particularly with arthritis. From experience I know that acidic and fatty foods can cause flare-ups. But, because everyone is different, it’s a good idea to keep a food diary so you have a record of which foods affect you. It doesn’t mean you should never eat those foods again. However, if you do indulge, be prepared!
Over the many years I’ve been living with pain, I’ve found so much inspiration from others in the same predicament. And, most of all, I’ve learnt not to be a ‘victim’.
Being positive and refusing to allow your situation to overwhelm you is the best and only way forward.
I hope penning this post and suggesting another way of thinking about pain can help improve your quality of life, if you’re struggling with pain on a daily basis.
Until next time.
Granny Flapjax X