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.
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.
The word “Pacing” has come to mean something different to me since being introduced to the Chronic Pain community. Prior to that, I had linked it very much so with parenting – pacing up and down corridors waiting for news, pacing up and down the house with a crying infant. In the chronic pain/illness world however, pacing is a coping strategy, basically “to pace yourself”. It’s a skill that can be quite difficult to get the hang of. In essence, you find out what your limit is, and then figure out your schedule to what you can do.
And then parenting comes along. Boom. My toddler DOES NOT CARE for pacing. Parenting and pacing are not the easiest of combinations to master.
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.
I’ve written recently about suffering with chronic pain. I’ve done so for two years, since a few months into my pregnancy, and have experienced many ups and downs with it. There have been many visits to many different doctors, trying different medications, different physical therapies and many mornings waking up and hoping “Today Is The Day” (As of yet, It’s never been the day). Pain is a constant in my life, which I’m working on reducing alongside some incredible medical professionals, but one that I try my hardest not to get me down.
While listening to podcasts while out walking one day recently, I came across an interview which my Dad had recommended I listen to, Sean Moncrieff interviewing the TV Presenter and author Andrea Hayes. She spoke about her life living with chronic pain, the feelings it instilled in her, different things she had done to cope. While her pain is from a different source, listening to her I related so much to the interview and found myself sending it to other friends who have suffered with chronic illness – all of whom reacted the same as me “I’m not cracking up, it’s not just me, she’s telling our story”. So, when I got home I downloaded a copy of the book “Pain Free Life: My Journey To Wellness” and was excited to get stuck in.
It isn’t something I write about often, my pain. Mostly because I don’t want to make this blog about my parenting journey into an eternal journal of whinging, but also in a slight denial aspect that if I don’t say it exists then it might go away any day now. That’s not been a successful venture yet, so I’m led to wonder what can be the harm of being honest in this, my little spot of the Internet. For the past two years, I have been parenting with chronic pain.