June Linkup (not) from a Narrowboat

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

Searching

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! 

Traumatising 

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!

Hoping

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.

Honouring

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.

12 Comments

  1. As always, you provide a thoughtful and sensitive commentary on your life and health. I feel that it can do you only good to be so reflective. You are treading a difficult path, one which those of us who do not suffer with migraines can only guess at. Let us hope that a more effective treatment can be found.

    Liked by 1 person

  2. Thanks for posting your latest update. Some of the material is familiar of course , but it is always good to be reminded of the main issues and their impact.
    Not a day goes by when I don;t hope for better things.

    Liked by 1 person

  3. i get very bad migraines like can have 5 a day very very nausea then i am Vomiting all over.tryed
    all sorts tablets /medicine .no help .i have long list health issues .ibs ., M.E .list goes on, i take part in a lot lot research.people never see the every day effects.there views/judgements are very Snotty Nosed
    my blog.http;//mark-kent.webs.com
    twitter,supersnopper

    Liked by 1 person

  4. I’ve had some major headaches recently, but I’m sure they are mostly stress related, or down to the humidity. My migraines got so much better once I passed through the menopause, I always believed there was hope at the end of the tunnel, it’s a shame it meant getting old, lol. I’m going to have a nosey at your Etsy shop now..well done x

    Liked by 1 person

    1. Yeh a lot of people struggle with humidity/ thunderstorms. I don’t *think* I do…
      I’m aware I might be about to get better in 15 years or so! I’m going to be such an exciting over 50yr old…I do think they’ll find better meds or even a cure in my lifetime if the research continues though.
      Let us know if you have any questions! 😀

      Like

  5. I love what you said about accepting that your condition was here to stay meant you were part of a community. Thank you for sharing some of the things you’ve gained as you reflect on your “anniversary.” I’ve recently passed my four-year “anniversary” of when my health took a dramatic change, and I appreciate your hopeful perspective.
    I hope you’re able to pursue your new treatment option soon.
    PS I enjoyed looking at your creative jewelry!

    Liked by 1 person

  6. Hello, again Naomi, lovely to read another installment on your wonderful little blog. And a great idea to use the prompts to raise awareness of headaches and migraines, which can, unfortunately, be so debilitating and have a huge impact on every part of someone’s life. Thanks for sharing your insights and experiences.

    Liked by 1 person

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