Or my nervous system’s fault either. Have you ever let your mind wander beyond the boundaries of chronic pain research?
I can’t help it, my mind flies around all over the place! Today, it’s in Maroni, a village in Larnaca Cyprus. That’s where my mum was born.
I’ve been wondering alot about village life lately. And more specifically about my grandmother (Giagia) and her lifestyle in Maroni.
I’ve visited Cyprus four times – each time without pain! I really love mum’s village Maroni, it’s beautiful. I always make a point of walking around the whole village when I visit so am very familiar with its nostalgic, stony, dry characteristics. I love the feeling of my feet on the ground in Maroni – not sure what that is. Perhaps a memory…
When I was seven Mum and Dad made their first trip back to their homeland after being in Australia for 13 years. My memories of the place and lifestyle are so vivid and they are key not just to my childhood but they greatly impacted life by frequently flashing by as I’ve grown.
We stayed for three months. I was mostly sick – asthma! I had allergies but not much was really known about Asthma then. Certainly, none of a great many Doctors my parents took me too knew asthma had a lot to do with allergies in the 70’s. I had endless Cortisone injections and was treated for colds.
Reality is though, even if Doctors knew more about Asthma, I’m not sure they were going to have much luck suggesting that my mum remove all the carpet in the house, let me hang my head out the window for fresh air on a winter’s night, ask her to throw out her fur and (God forbid) even try and insinuate there was dust in the house. And none of the hospital practitioners in Cyprus whom I was rushed to for Oxygen one day during the holiday would have guessed that Giagia and grandfather’s (Pappou’s) rabbit could be the reason a seven-year-old stopped breathing.
I pieced it all together when I turned 10 and visited a friend who had the sweetest little bunny as a pet. I left home in pristine condition and returned looking like I went a few rounds with a Queen Bee and not long after that day I discovered I could no longer eat cucumbers, zucchinis and eggplants (or have pumpkin skin, peach skin, watermelon skin) as my asthma transformed into a cucurbit allergy!
But this isn’t about my holiday or childhood or my allergies. It’s about Maroni and my wandering if Giagia had pelvic pain. Giagia had 13 pregnancies, there were miscarriages and deaths leaving eight of her children surviving beyond birth/childhood (seven are alive today).
There’s a fair bit of evidence there for pelvic pain… but she didn’t have pelvic pain.
The house had steps and a couple of staircases leading off the courtyard into other rooms – a beautiful home. Giagia and my Grandad (Pappou) were love birds! To the day he died he adored her and as far as she was able to remember (and beyond even with her failing mind) she adored him too. They worked hard, made a great life, got to see other lands and great, great-grandchildren.
Pappou owned a fair bit of land and earned a living from it. I had a glimpse of that at the age of seven and even got to ride his greatest work companion (yep, I was allergic to him too!).
But back to Giagia. I just keep thinking that her life didn’t contain mod cons to help her daily life but my Giagia didn’t have to drive, be in a car, or keep up with the tasks that we set ourselves today (or the number of people that we keep in our lives).
Life was simple, small, close… it was contained. I believe that translates to a life that’s manageable!
Gia was very busy and it may have taken her far longer to do her washing by hand but for that hour, she most likely just did the washing (no ping, ding or share!). At most, a family meal would have been sharing the stove with the years’ jam supply and a chicken was probably being drained of its blood in her trough in preparation for the next meal.
If it was a hot day, the fig and olive trees would be enjoying the sun. There was no lawn to mow and the kids weren’t going to any parties or activities on the weekend or after school because they were entertained lighting bonfires through autumn/winter and living at the beach in summer.
Giagia would not have had 10 invitations on the table to events that were miles away. And unless there was official family paperwork to attend, Giagia didn’t really ever need to leave the village. Life revolved around Maroni. Mail was delivered to the village centre, money was exchanged at the village centre, her supermarket was in the village centre and all her friends and family were steps away.
She would have helped in the fields, riding the donkey to get there – it was around 1 – 2kms.
How did life get so busy in 42 years?
How did it wind up to be blaring loud and so congested? Who said we had to keep so many people in our lives (yes, in addition to the cousins!!!!)? And what’s with the kilometres of traffic we have to endure?
CV19 affected everyone’s pain differently. For me, it was an eye-opener. Even after scaling down life from city to country town CV19 shutdowns were an additional lesson in perspective, balance and contentedness.
We demand too much from life today. Some might word that differently; life is too demanding. But we have a choice in these things.
We might look alien making choices, and snobby and rude and disconnected. And perhaps we’ll also feel snobby, rude and disconnected but finding balance in life might just be the key to living with less pain. It certainly has for me.
I’m going to attempt to stop blaming my brain for being sticky and my nervous system for being over sensitised and instead I’m going to (once again) grant myself permission to remove as much of the ‘have to’ from my day as I possibly can. It’s just far simpler and less painful to ‘not have to’.
Interesting that with that thought, both my brain and nervous system go, ‘aaaaah’.
Soula, it saddens me that those experiencing ongoing pain are being exposed to “target concepts” for which there is no or little factual (empirical) evidence. Such concepts include, “it is the brain that decides whether you will experience pain”, “the body learns pain and therefore it can unlearn pain”, and the function of pain is to protect bodily tissues. These are all speculative and controversial assertions that may or may not be true. However, they are being passed off by some clinicians as established knowledge.
I wish I could understand and visualise the sciences John. I do think some days it all sounds absurd but don’t be sad as I (and probably most people living with pain) don’t get held up with definitions. The doing part and the living part of being in pain and managing pain quickly moves us past to ‘what can I do to manage better and keep the pain levels down?’ which in the instance of this post is keep culling unnecessary activity in life while pacing. It still is frustrating watching the machine of research chug along over you as a patient. But it seems to make no difference what research is actually learning (or not!) because no one ever finds the solution. I could cut the brain and the nervous system part out of the post or I could reference other research but either way, I’d still have to cull activity so it changes nothing. I’d still have an implant, all my treatments would be the same.
The more science learns about pain, the less it seems to me it actually knows.
Soula, in my opinion, the examples I gave above are mere opinions (in this case, the result of wishful thinking) masquerading as science. Do you not see the danger in this form of thinking?
There is much self beating with the ongoing management of chronic pain. I feel like all research insinuates some blame on the person – even unintentionally. It’s how a patient reads, we’re not healthcare professionals. Maybe it has to do with the fact that any research leads to ‘my body can’t fix this’. So confusing even trying to explain my thoughts. I believe I know what you mean.
Soula, how would you respond if a healthcare professional told you that “you can retrain your overprotective pain system”?
I hear that all the time now. What should I hear?
Soula, some of us are very concerned that such misleading information is being conveyed to people experiencing persistent pain. Pain, as an experience, is not “learned”and therefore cannot be “unlearned”. Here is a link to an article explaining our strongly held position in this matter: https://painlosophy.wordpress.com/2020/11/23/why-pain-cannot-be-learned-and-unlearned/
This might sound odd but my experience could relate to either research – that’s what I mean by research appears not to matter to the person in pain. I do understand how you would be frustrated being able to see and understand your own theory but most patients don’t understand research… it’s getting to the point where I’ve stopped reading it. You may have seen my post: Just Another Freaky Boat Ride https://pudendalnerve.com.au/2020/10/31/just-another-freaky-boat-ride/
I shall soldier on with my adapted life and my magnificent stim implants which have brought the most relief of all. You have been an enormous strength to me! Thank you.
Soula, I can well understand your reluctance to read the research but I must emphasise once again that what is being passed off to pain sufferers as scientific is merely unsupported speculation.
We need more researchers! If I had the headspace I’d attempt a little study…
Sounds like a wonderful life.
We do bring many of our stresses on ourselves and stress adds to our pain and we get more stressed…. on and on in a circle it goes.
I want off this treadmill!!
Can feel myself breathing already ♥️