Link up with A Chronic Voice: Narrow-boating, Migraine & Love

Here I am again with what is turning out to be a bi-monthly link up with A Chronic Voice for me.  These prompts often ‘allow’ me to write a few things that don’t make a whole blog, but feel good to talk about so always appreciate dipping into this. 

Waiting

I’ve recently had a particularly long migraine, and because my body decided that wasn’t enough, I then experienced a long stage of what some have coined ‘the hangover’, where the pain is usually not so severe, but a tiredness that isn’t cured by sleep is in full effect. I kept thinking it is gone but then the extreme lethargy hits me like incoming fog; slow but all-consuming. Waiting for it to pass used up all my reserves of acceptance, and now that it’s gone I have to find more, to accept that I can’t ‘catch up’ on what I didn’t do; it just has to stay missed. 

Parting

Living on a narrowboat means a lot of things that are different to a house. One major one is how much your floor moves around. I think you’d have to be very sensitive to sea sickness for it to affect you but it can wake me up even with just Tom moving about the boat. As it comes to winter, us ‘constant cruisers’ are left, meaning the numbers of boats going by, causing the boat to move around, diminishes to a few a week, rather than a few an hour we have had the last few months. I happily part with this interruption, and it means I feel more positive about the winter than I ever have done! 

Preserving

Preserve: ‘To keep alive or in existence’. Keeping alive with chronic illness is often not the problem and I have heard people with migraine who have had cancer, talk about how the process for cancer has been much more straightforward – still horrific, obviously, but the pathways set up just so much clearer. With life threatening conditions, keeping alive is something to fight for. For me, staying alive has felt like the least of my problems, more acutely at times than others.

Affirming AND Loving 🙂

My partner, Tom, and I have recently written wills and got matching rings for our thumbs, as our alternative to marriage. I didn’t feel like we needed affirmation, as such, but every time I look at his ring, it makes me smile. Not just that we have rings, but it affirms in me that we want the same things, by both being happy to try an alternative way of living and loving.

12 Comments

  1. Hi Naomi, happy to have you with us again! And really happy for you and your partner with the rings and affirmations! I know what you mean by not needing it, but it’s still nice to have a little token or memento 🙂 Wishing you well for the upcoming winter, too!

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  2. I can so relate to migraine hangovers, but to be honest, I always felt like the slightest movement would make me vomit when I was suffering, I don’t know how you cope on a boat. I also get what you mean about Cancer, it’s a dreadful disease and one I hope I never have to face again (my Mum) But at least you know your path. Your rings are lovely and I’m so happy for you both for finding what means most to you. x

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    1. Yeh I’m very lucky not to vomit at all with it so I guess that’s part of why the boat works.
      Took some looking so I hope that means I don’t take it/ him got granted so easily😎😍

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  3. Hi Naomi! I’m new to your site through A Chronic Voice’s linkup party. I just wanted to say congratulations on your rings. They’re beautiful! I think it’s really cool that you live on a boat and I hope it helps. I also suffer from really bad migraines. It never occurred to me that a boat might be helpful. Wishing you all the best and looking forward to getting to know you better.

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    1. Hey Carrie! Thanks for your comment. This is why I love the link up 🙂
      I think it helps me but wouldn’t help everyone…you would need to be fairly stable with your condition otherwise it would be hard work getting to medical appointments etc. I’m just trying another drug right now and an finding that tricky enough. I love that I get to see different places even if I can’t walk very far, and being taken away from the hubbub of daily life allows me to relax, and being busy is a big trigger for me. So it’s all very personal. If you do seriously cosier it please do send me a message and we can chat more : )

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  4. Hey Naomi such a loving post. I adore how you and Tom are giving two thumbs up to the world with your intertwined love its such a beautiful pic! Sorry to hear about your migraines, especially with the hangover it can feel like your never migraine free when it drags back and forward between symptoms. I hope the winter brings more calm with it to your head as well as your floors x

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    1. Thanks Niamh! Yeh i felt the thumbs up was very positive. I have also since considered thumbs to be the most dextrose of all our fingers and so you could use the metaphor or our relationship being so too… but that sounds a bit cliche! I’m loving autumn so far 😀

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  5. Hi Naomi – totally feeling empathy on the migraine front! I’m going through my first multi-week migraine, I’ve had it since mid-August! Fortunately the pain level isn’t too high, but the light sensitivity has really limited my time on my phone and computer! I love how you and your partner are celebrating your love without being traditional – my partner and I have been working through our best options – technically we’re engaged(I have a beautiful ring), but we aren’t going to have a legal marraige because of the way disability laws work. *sigh* We’re hoping to have a celebratory ceremony, but for now we’re just financially struggling to keep our heads above water!
    Living on a boat sounds lovely – it seems like a great way to explore, and I’m glad you’re looking forward to winter!
    take care,
    Alison

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    1. Ugh Yeh long ones suck. My longest has been 5 days I think but sometimes they morph into exhaustion which can then last longer again… and the fact that people assume migraine’s most horrid part is pain is really not true for a good section of folk. I find brain fog and depression can be worse, for example so hearing you on the other symptoms front!
      Sounds complicated with your partnering classification… the main thing is to be happy remember – but not at the expense of being needlessly poorer, I’d say! Thanks for reading and taking the time to comment 🙂

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      1. Naomi – it’s really weird to have a low-pain migraine last so long – I’m at the 4-month mark now! For me, it’s the screen sensitivity that’s really been getting to me, making it hard for me to do any of the things I’ve been wanting to do!
        I absolutely agree on the partnership thing – the important part is celebrating your love! Basically, my nieces and nephews don’t call Al ‘uncle’ because we aren’t married(how my family does it), so part of having the ceremony is giving a date where Al ‘officially’ becomes their uncle, rather than the guy I’ve been dating for all their lives! I hope you are feeling better 🙂

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