Textling #91

No easy way to travel on your own when you’re at your best lying down, can’t propel yourself in a wheelchair, and struggle to keep compos mentishood and speech in reach. Fatigue-induced pain-levels may swing skyward first. Motivation is strong though as it’s more than two years since you last saw your mum. When you finally crawl away from TB and its treatment woes you plan, prepare, hope.

Terrified until the journey starts, you give yourself over to being conveyed by an array of strangers: driven, flown, rolled, even carried, and when parked in transit (far from the loo, just as well you’re without water) do not think beyond the next incremental task. You have a Zen master side! And a pocket full of cards detailing symptoms of POTS and M.E., and some of your immediate needs, should words fail you.

Popping grapes on parched tongue turns into ambrosian spectacle. During the flight you’ll slump across two seats (you paid for the privilege). At the airport you sit, slouch, hang, curl on a blanket on the floor, ready for another member of the relay-team. It’s an exercise in trust. Staff, on long shifts and underpaid, attend with grace and generosity. You radiate gratitude at every stage. The house you grew up in awaits.

For two weeks you spend much of your time in bed, eyes closed, but you and mother (who is elderly and now has to look after you) have gentle afternoons together, chatting as long as energy holds. So good. Wish everybody could.



8 thoughts on “Textling #91

  1. Phew!
    Powerful words, as usual!

    It brought back difficult memories and also a reminder of how strong is that desire (need actually!) to go somewhere and risk (the inevitable) consequences.

    Most of my disabled assistance journeys were as near perfect as they could be. The ones that weren’t were hideous and made me week, inwardly as outwardly was too (visibly) unbearable.
    I swallowed the distress. The fury burned and accelerated my descent into the blur of extreme fatigue.

    I applaude your feisty courage!
    Enjoy your Mama xx


  2. Thanks, Jo. Came back from my mama 3 1/2 weeks ago, and am delighted I went. Was good for both of us. Glad you had some near perfect journeys – there’s so much that can go wrong. Have had some very challenging ones myself over the years, disheartening and so much harder to recover from. Compiling list of how assistance could be improved, made less of an anxious task.


  3. Brilliant that you travelled to see your mum & so brave to make the journey. I see my mum about once a year, but a flight isn’t required. Hats off to you for perseverence & grit, Marion. Best wishes for comfortable recuperation. Penny 🌸


  4. Thanks, Penny! Recuperation is never comfortable, is it, but I’m still grinning with glee at having managed the journey and finally seen my mum. Life with M.E. takes away so much that we’d never give up freely. If only people who doubt the illness could see…


  5. Well done,Marion! I can’t imagine what you felt like on arrival. Such a complex of physical and emotional responses. Did you have to fly to Germany?


    1. Yes, Amanda. The flight itself is the easiest part… Overriding feeling when I arrived: relief the size of the Rocky Mountains. Anxiety leading up to the journey had been immense. Felt so vulnerable. Full-blown joy came much later. I think I only truly feel it now, having it all behind me, incl. the worst of the aftermath.


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