Here I am again with a monthly link up with A Chronic Voice. As always, these prompts often ‘allow’ me to write a few things that don’t make a whole blog, but feel good to talk about. This month I would like to highlight the fact that it is Migraine and Headache Awareness Month.
I’m often searching for ways to describe migraine, and particularly chronic migraine and headache. Officially, it’s ‘chronic’ when there are at least 15 days a month…but of what? It’s describing what happens on these days that’s the tricky part. And then what if you have say 10-14 days a month? Are we saying that’s not something worth treating – worth helping? Sometimes I can give numbers to the pain I’m in; 1-10, 10 being the most pain I’ve ever experienced. But that only really works for what I call ‘pure pain’. Then there’s the pain of exhaustion, and the mental pain of the migraine and then of feeling like you’re not achieving much in life. Sometimes I describe it as a bad (alcohol) hangover. So when someone asks ‘how are you’, or I’m finding a situation difficult, there’s always a search inside myself of how to answer that question, or respond in a way that’s useful and doesn’t leave the other person(s) traumatised!
It’s coming round to my anniversary, I suppose. The three year anniversary of when I first took a substantial amount of time off (almost two months) for migraine, which marks when it first became a ‘real thing’. I refuse to think of it as traumatising; it was hard when I didn’t know how long it would last but once I realised it was here to stay, I could feel like a part of a community, not an interloper who’s naive and clueless. Stages along the way may have felt traumatic at the time but for me, a hard time has led to decisions I wouldn’t have made otherwise, like being able to live in the countryside on our narrowboat. I would never have dreamt of living in the countryside before old-age retirement, even though I always felt drawn to it. Of course, now that I’m here I’d be very happy for migraine to float away with the autumn leaves and for me to stay in this new rural life!
I have some hope for sustained change after the COVID epidemic has created so much of it. My upcoming neurology appointment would be so much easier over the phone, like they’ve been making mandatory the last few months. I hope that this stays an option so I can make it, wherever I am in the country. I also hope for a new direction; after failing over three medications, I am in theory in line for a more expensive treatment option. With backlogs of treatment a key feature in this week’s news, I don’t hold out too much hope for this happening any time soon, however.
I made a promise to myself that I would always enjoy my work, and I still mean to honour that promise. I have managed to always start a job with enjoyment, even if it went downhill after a while. Now, six weeks after starting our own business selling handmade walking sticks and jewellery (see Facebook and Etsy), I am holding to that, even though my health tries to stop me most days. My health may even be my saving grace; too many crafters admit to being burnt out after working 12 hour days every day – something that is so wildly impossible that I can manage a laugh and feel some gratitude that that will never be me.
That’s it from me for now, please do have a look at some other linkups from other fabulous bloggers (scroll down on the link to below the prompts). As always, comments on this blog welcomed.