If you’d asked me a few years ago to describe myself, the sentences ‘I am a chronic pain patient’ or ‘I live with an invisible disability’ wouldn’t have featured in my response. Looking back I can see that those things had actually been true for much longer than I was willing to admit.
My roles as a mother and a wife are my most important ones without a doubt. Before you ask; yes, this fits in just fine with my Feminist beliefs, but that’s another blog post 😉. But long before I was a wife or mother, I was other things. I was a teacher who studied and trained with the intention of returning to East London and working with children who didn’t often encounter teachers from the same socio-economic and indeed geographic background as them. I had my own priorities and values that drove my day to day work; I forged relationships with pupils who were struggling in the mainstream, whether their difficulties were expressed through withdrawal from their peers or the occasional launching of pieces of furniture (in my first year of teaching I actually caught a chair mid-air…as my hubby or best friend could tell you, this was nothing short of miraculous as I am definitely on the clumsy side 😄). Unsurprisingly as the years went by I did more and more work in the Special Needs area with a particular focus on pupils with social & behavioural difficulties, attending seminars two evenings a week after work and studying whenever I wasn’t working to get my MA in Special and Inclusive Education.
In the decade that I was a teacher, I developed a teaching persona that brought certain elements of my personality to the forefront. I never wanted to be one of those teachers who roar with actual rage at teenagers because they’re taking personally the fact that sometimes children push the boundaries. I made sure my pupils knew what I expected of them and also that I cared about them & their education & well-being, even when their behaviour was challenging. They knew as well that disrespect was a no-go in our classroom, towards each other or me. I told them if I was having a particularly high pain day so they’d know I wasn’t irritated with them. I never hid from the pupils the fact that I really enjoyed teaching them and that they made me smile every day.
When I had to resign from my first senior post in January 2014, I was nothing short of devastated. The Chronic Migraine I have lived with since my teens morphed into Daily Migraine. I’d had stretches of Daily before but never for this long or this severely. The pain, photophobia, nausea, vomiting and many other delightful symptoms meant that the only way I could get through the 12 hour days I was putting into my new post, plus the work at home at weekends, was to take far more strong painkillers than my doctors were happy with (medication over-use is something you have to be careful to avoid with this condition and I always had been, to the extent that I battled on with no rescue medications at all for several years). Eventually, I couldn’t do it even with the painkillers. I pushed myself to breaking point to try to make it work. My specialist, an expert in the field,had told me several times over the years that the few patients he’d known with Chronic Migraine as severe and unresponsive to treatment as mine did not work full time jobs as it just isn’t feasible. Hindsight is a beautiful thing – I should have listened but letting go of my career even temporarily looked like the end of the world to me.
When it finally happened, I was distraught. Who was I if I wasn’t a teacher? For me it was a vocation, my purpose in this world. What was the point of me if the struggle to study, qualify and gain experience, despite the condition I’d carried with me since childhood, had all come to nothing?
These questions stayed with me for a long time. Figuring out who I am now is very much an ongoing process. The Chronic Daily Migraine has been joined by Fibromyalgia and I’m lucky if I make it out of home once a week at the moment. My husband and 4 year old daughter are absolute blessings but more than this, they’re the reason that I couldn’t give up on a life of constant pain when my career slipped through my hands. How would have I have coped without them? I’d like to say that I would eventually have dug deep and found the will to keep going without my vocation, but I can’t guarantee it.
I don’t have the answers re. what to do when the things that define you are stripped away by chronic illness and disability. There are a couple of things that help me though. Holding on to my relationships with people who know me well has been so good for me – they remember that I’m determined and strong even when I forget! Prioritising the little every day things that give me joy is something I do now; those hours when I’m ‘functional’ (eg I can sit upright) I use to have a meal with my family or cuddles with my daughter. Making connections via YouTube, Twitter and Facebook with other people in similar situations to me has been so helpful – the isolation daily pain causes is hard to overstate. I’m taking an active role in my treatment these days too; I stay in touch with my specialist and keep him updated on my views re. current treatments and the plans for upcoming trials. I research newer treatments as they become available so that I’m prepared & informed to consider them with my Neurologist.
I have a long way to go to get my life to where I want it to be, for myself and my family. I have accepted that it will never again look like it did before. I have also admitted to myself that the good old days came at a cost – I was constantly stressed about the amount of time off my condition generated and came straight home from work to bed with terrible pain more often than not, a situation that was bad enough when I just had myself to worry about but became totally unacceptable when I started a family.
So, who am I now? Turns out I’m still me, with a metaphorical ‘work in progress’ sign around my neck.
If you or someone you love lives with a debilitating condition, I’d love to hear from you. Feel free to comment or find me on Twitter.
Check out this video from my YouTube channel- Chronic Daily Migraine: I Used to be a Person.