Textling #69

Lovely visit. Lovely visit! Cupcakes, talkfest, crochet recall. Cut when fatigue befalls, like castigation. Pain strikes cyborgian notes: arms, calves, skull bespoke from basement metal forge. No Midas-touch – a pound a limb. Enhancement of abilities – fail; branching of facilities – nay; not even a green thumb.

On the clock: pith, purpose, potency, a kind of flowering. Crack in rock.

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Textling #68

Mid-January a six months’ course of treatment for TB trundled to an end. Third illness, sick on Sick, a gripping slew of side-effects: friendship with food cut loose, nausea bounding up and down the Richter-scale, and dizzy turns, with occasional, almost blissful reprieves. No rest for the knackered…

I am grateful (and lucky) that my lovely doc insisted an erratic but tenacious cough was worth investigating. Baffling symptoms are all too often banished to the half-light of M.E. where they incur no action.

Now I’m slowly crossing over from the zone of bounteous recoil, a first tentative hooray teeters on the tongue. Is it really done?

Textling #67

I admit it, I do suffer from Bed in a Bottle-Syndrome (BBS), easily cured by a six-week course of CBT. By writing on dotted lines I will learn to weed out pathos, self indulgence and plain and simple narcissism. I will learn to pummel my pillow harder, mentally at least, to channel anger and frustration more efficiently. I will strive not to mind patronising advice, disregard, or the failing of pledged support. Authorities throw spanners? I will catch them! I’ll have a second set to sell on eBay soon. Eyeteeth for conversations, jokes, a natter, and occasionally a good old moan? Silence is golden! Don’t leave the house much? Staying in is the new going out! Politics are scary, care is beleaguered, confidence lies rolled up in a carpet – deep breath. We miss, we miss, we miss…

I have flowers in every room: freesia, tulips, a cabbage mimicking a rose.

Textling #65

Sometimes the world meets you were you are. A course of guided meditations for folk who live with constant pain addresses those who sit or walk, and those who cannot rise. A blogging artist reads her posts in sprightly voice and stretches to a wider crowd. The audience at a TED Talk sign their appreciation as noise is agony to many people with M.E. (this made me cry). The day after the inauguration (and what a day!) a virtual women’s march joins the protests taking place all over the world. I found out too late and in a much too tired state, but knowing made me feel connected, counted even. 

I commend, and turn to calibrate my gratitude. It’s that simple: acknowledgement amounts to affirmation.

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Mindfulness for Health. A practical guide to relieving pain, reducing stress and restoring wellbeing by Vidyamala Burch and Danny Penman (I have the audio-version)

Jennifer Brea’s brilliant – it’s high time you heed us – TED Talk What happens when you have a disease doctors can’t diagnose? June 2016

Elena Thomas: Threads

Indivisible, not invisible. 2017 Disability March, contingent of the Women’s March on Washington, 21 January 2017