It was written by a fellow blogger who suffers from Chronic pain Life In Slow Motion and whilst reading it my spine tingled as for the most part it was as if I had written the blog myself. The original blog can be found Can We Speak The Truth About Our Pain and I am copying/editing below the paragraphs that most spoke to me. I know this will speak to many of my friends who are fellow Spoonies who will strike a chord with this the paragraphs in italics are lifted verbatim the non italics are changes and my feelings and thoughts that I have added;
How do you feel towards your chronic pain?
I started thinking about this when reading this blog today, and I realised that despite the strong and harsh things we feel towards our pain, we don’t often talk about it. It’s not something we often say out loud. I am so focused on figuring out how to move forward whilst in pain, that I don’t stop and think about how I feel towards the pain.
And how do I feel towards it? Quite frankly, I hate it. I detest chronic pain. Chronic pain makes me want to scream and throw things across the room. Chronic pain has taken so many of my dreams I want to sucker punch it in the mouth. I hate chronic pain. This I have lifted word for word as it is exactly how I feel, and days that I spend alone trapped these feelings fester away inside me and impact on me and those I love.
Yes I can work towards acceptance, I can use the mindfulness techniques, pacing and the support of the pain management clinic that I have learnt, and yes I can see all the good in my life that surrounds the pain, my wife, children and family and friends all of whom we consider as family after supporting us over the past thirteen years, but none of these things change the fact that living in chronic pain is something that I hate. For some reason this seems important to say out loud and put into the universe, because so few people say it out loud. As horrible as chronic pain is, I don’t often hear people say that they hate it, I don’t why would others?
It is so easy to become ultra-focused on moving forward and living our lives in spite of the pain. In our search for new lives and our desires to make the best of our situation, we don’t always take the time to say out loud that chronic pain is horrible, and it ruins lives.
Chronic pain destroys marriages and families and friendships. Chronic pain leaves people destitute and alone. Chronic pain wrecks careers, dreams, and opportunities. Chronic pain is a destructive force that does as it pleases, and so often we have no hope of stopping it.
All of this is true. And it is also true that sometimes we need to push this truth to the side. We have to move forward with a healthy level of denial that we are going to be ok, that we are going to make it, that there is hope for us ahead. Maybe even relief! We have to hope and think in this way, or we won’t survive. I am lucky that my marriage has got stronger in recent months even though my pain and functionality has deteriorated significantly over the past 18 months and I have become more reliant on others to support me and us. It is true I have lost friendships but I have also built stronger ones, met a whole new set of friends from a local support group that has been set up and I have spoken about on here previously. I have even been surprised by the way that some friends and shown compassion beyond what I expected.
But every once and awhile I think we need to go step back and speak the truth out loud. Every once and awhile, we need to set aside our acceptance, set aside our plans to beat our pain, and set aside those positive things we tell ourselves that enable us to move forward.
Maybe we need to take the time to scream into a pillow that chronic pain sucks. We need to say aloud to our friends and family members that we hate this chronic pain, it is no good. We need to think really hard how we feel towards our chronic pain and speak it or write it or create art about it.
And then, after a moment, we move on and put the pain to the side again and reach for that acceptance again. Find that hope. Make those plans. And keep moving forward.
How do you feel towards your chronic pain? What has it taken from you and how has that affected you? If chronic pain was a person sitting in the chair across from you, what would you say?
Please do share with me how you feel about it, what it has taken from you and how it has affected you as in the final questions, in response to the original blog I said;
“This is exactly right and how I feel about my Chronic Pain, and the need sometimes to scream out loud is so true. I read this and thought it was as though I had written it myself, do you mind if I abbreviate and share this on my blog I will link to you and give you the credit you deserve for nailing exactly how me and many of my fellow spoonies feel!
I would also add it has taken away so much from me, the ability to go for my morning run or any sort of run, in fact it has near enough taken away my ability to walk. It was my way of de-stressing and unwinding after a bad day at work, I kept fit, played sport, enjoyed golf and gambling with my mates and all that has been taken from me because of my pain. I fu@king hate my pain and you are right it helps to say it out loud.
Even though without it I would not of met my wife again, had our family together and have our lives and friends and families we have today all of which I am thankful and honoured and proud to have, it doesn’t alter everything else you have written! If I could award you post of the year I would for this. You have nailed life in chronic pain the good and the bad!”