Over the weekend, I saw Dr Doireann O Leary put up an Instagram post referencing a study which looked at the conduct of medical professionals on their personal social media. This study inferred that these professionals, namely vascular surgeons, were being inappropriate in the way that they conducted themselves online, in a number of ways, including the uploading of holiday photographs wearing swimwear, drinking alcoholic drinks and expressing political views. This investigation of social media accounts was done by male “researchers” setting up fake accounts to spy on their medical colleagues to report their findings. Quite rightly, Dr Doireann’s post lambasted this “study” for what it was – an unethical, in many ways misogynistic, double standard holding piece of research which really held little to no value. It professed that this content would negatively impact their future careers if made public to their future patients and employers.
Life got a bit mad and away from me so the Covid-19 quarantine diaries are kind of gone for now – it’s not that nothing happened, but a whole lot of it is repetitive. So instead, this time, I’m opting for a snapshot – less detail, more of the important stuff. Because believe me, you don’t need to know about the million Pokemon characters I’ve been learning about of late…
So, Life in Quarantine Ireland, A Snapshot of Summer 2020.
September is International Pain Awareness Month. Now, I know that sounds like a bit of an unnecessary one. We all know pain is real, we know it exists, why does it need a month? Well, as someone living with chronic pain, there’s a lot that people DON’T KNOW, or assume instead of actually finding out. So, the hope of this International Pain Awareness Month is to inform, to educate and to hopefully bring a greater understanding to the larger population lucky enough to not directly experience chronic pain as to what we’re going through.
For the last six weeks, I’ve been taking a drug called Humira which was meant to help get rid of my chronic pain issues. The general gist of how it was to do that was that it would tell my immune system to cop onto itself, stop fighting itself and calm down the inflammation which my doctors think is causing all the pain to kick off. I was so hopeful that it would work. Living in pain all day every day has been my life for the last five years and it’s bloody hard, so I have tried MANY things to get rid of it. But sadly, this time was not meant to be, Humira didn’t work for me. Here is my experience with the drug and what we are planning to try next in the hopes of getting me pain-free (or at least able to function).
As someone who lives with chronic pain and chronic illness, I’ve got a fair bit of downtime. I’m currently out of work as managing full time employment when your pelvis screams at you for sitting down isn’t exactly the easiest proposition. However, the child is in Montessori all day, so I have had to find something to keep my mind busy or I’ll go completely demented (there is only so much The Good Wife re-runs a woman can manage). And so, my latest creation is this: The Chronic Pain/Chronic Illness Alphabet – an A-Z guide to Chronic Life. Hopefully it will ring a bell with others who are living with chronic conditions, and bring some more understanding to those lucky enough to not interact with it.
This post has taken me a long time to write. I’ve previously written about my struggles with mental health, and with my journey through life with chronic pain, and in my head this feels like it should be an extension of it. This post was started in April and has been living in my drafts ever since – down to things changing, trying to do more research, trying to wait until I had an answer. And so, here I am, in mid July, feeling like we’ve not really moved on that much, living with life with no diagnosis to show for it. Read More
Over the last few years, I’ve tried my hand at a fair amount of chronic illness interventions. Various exercises. Many, many medications. Physiotherapy. Interventions that included big scary needles which hurt like a mo-fo. CBT. Therapy. And throw a few more medications in there. You name it, I’ve probably tried it in my search to end the cycle of chronic pain and depression. It’s been a journey, to use a word that I’m not a particularly big fan of. I’ve tried everything mentioned to me, in the hopes of waking up and having a day with no pain, or a day without thinking dark things. And as far as the depression has gone, it’s mostly been positive. It’s taken some tinkering around with dosages and doctors and therapy but it’s manageable. Chronic pain is a wholly different beast. In my search to find the cure for my pain, I’ve found some halfway fixes, but also discovered some rather awful side effects.
As a chronic pain patient, I spend my days willing the pain to feck off and find a new hobby. I’ve got discs bulging in my neck, lower back joints that decide when they want to play ball and unexplained pain in various other places. I’ve tried tonnes of therapies, medications, procedures and am still here, battling away and waiting for a day where I’ll wake up and magically be pain-free. I’ve realized that is unlikely to happen. When I said that to a doctor a year ago, when I was discussing my plans for returning to work, I was told it was an awfully negative outlook to have “for someone so young”. They saw my realism as a thing to count as a negative attitude instead of just deciding that it’s something I’ll have to figure out how to live with instead of in spite of. In contrast to that, it seems that the new wave of thought for pain management doctors is “pain acceptance”, where the patient is being told that instead of pursuing medical cures to their pain, that accepting it and finding holistic methods to deal with it and live with it are better options. This is being met with some opposition, in particular in the USA, where there is lots of talk about the growing opioid issue at the moment.
I’m a self-proclaimed spoonie. It’s not a club I readily joined, it’s not something I would hope that anyone I love would join. It is however proving to be somewhat of a lifeline, this community that I have found. If you look on social media networks like Twitter and Instagram, the “#spoonie” can be seen all over the place, but it doesn’t really lend itself to an explanation. So what exactly is a spoonie, how do I fit in, and why are we so obsessed with all the spoons?
In talking to others about chronic pain and chronic illness, there is one theme in particular that keeps coming up. The idea that being not believed is a huge part of the problem. Having dealt with both mental illness and chronic pain over the last few years, I’m all down with the invisible illness speak. I’m on my way to gaining a medical degree through experience hours alone. It can be lonely, at times, being in this bubble where everything seems alright when it isn’t. Not being believed, or being told that it’s in my head, has been a big part of that.
A picture tells 1000 words, right? With some topics that can be hard to discuss properly, pictures and memes can do a lot of the talking. This is definitely something I’ve found with chronic pain and mental illness – it’s easier to laugh from the outside than talk from the inside. I follow a lot of other Chronic Illness warriors on social media, Instagram in particular. Their sharing of memes and funny pictures, as well as inspiring quotes, keeps me going on rough days. I share them with fellow pain sufferer friends. As well as telling 1000 words, they open up conversation lines in ways that we normally can’t. So I’ve grouped together a few to give as examples of memes that describe life with chronic pain. If you’re a sufferer, or love someone who is, then you may relate.
I’ve suffered with chronic pain in my back for the last two years, since an incident during my pregnancy with Eliott. It has had a large effect on my life and has made me look at how I do things in a different way. Having read “Pain Free Living” a few months back, I was introduced to the existence of Chronic Pain Ireland, a charity which helps people like me, who are living with chronic pain, providing supports.