Postural Orthostatic Tachycardia Syndrome. Myalgic Encephalomyelitis.
Nightstand Contents
1. Lamp.
2. Phone- Run out of speech fast.
3. A favorite card-A changing display, but always art. My hands are in mourning, they used to make.
4. Book- The one I most long to read, for the title alone.
Unbearable Splendor, by Sun Yung Shin
5. Cup of Coffee- Best beverage of the day, early morning fare, and drunk with deliberation.
6. Swimming figure- Gift from a friend.
7. Shells and Pebbles- From Norfolk Coast- more longing.
8. Childs Telescope- To watch birds from bed.
9. Reading Glasses- Not much in use just now-fatigue blurs the vision.
10. Gum, Gin Gins- To help with nausea.
11. Insomnia meds.
12. A few supplements.
13. Rubber egg- To strengthen fingers.
14. Tissues.
15. Notes to self-Lists of things that need doing, ideas for art or writing, line from a poem I like, endless reminders...
16. 1 pencil.
17. 2 pens.
18. Coaster.
19. 3 Glasses of water.
20. 2 containers of fruit- Brought by a caregiver.
21. Torn list of things ticked.
Drawers
22. Address Book.
23. Supplements.
24. Notes to self.
25. Tissues.
Shelf Next To Bed
26. ipad- My window into the world- e.mails, drafting of texts, grocery shopping, BBC IPlayer, audiobooks (just finished Madeleine Thien's, Do Not Say We Have Nothing-brilliant.)
The f-word
Amongst all the f-words fatigue is the worst. M.E. is like a burglar who steals from you every minute of every day. Its booty is your energy, half a sackful of cognitive functions and whatever else it can find. Out goes your profession, your social life; your mobility, vision, memory; your ability to look after yourself without help; your idiosyncratic vitality – in short: the way you were in the world. Hardest though: your intelligence curls up in a ball and rolls out of reach and you lie in wait for those rare instants when you can seize it by the scruff of its scrawny neck and pull it from under bed, for a wee while.
At times fatigue is so profound vitality and enterprise seem otherworldly. Life with this kind of chronic illness, mine and that of untold others, is markedly monotonous and utterly absorbing. Not much to describe as far as interesting activities are concerned, no fireworks to report (although there is passion), no adventures (not for lack of impulse), rarely achievements which count in wider world (somehow ambition survives). Focus is on basic needs (food, baths, medical appointments) - a handicap for stirring conversations.
For a while art-making sustained me. It's what remained from life 'before the fall'. Formerly a video-artist I adapted my practice and crocheted and assembled, in the supine. While one thing after another fell away I slowly, steadily produced small, impassioned pieces. Making brought pleasure, meaning, purpose, and a wavering confidence, held promise of connection. Occasionally I sent work to exhibitions. Additional health problems have dumbed my clever fingers down. I can’t make shape stitch sew draw paint. As capacity and vision wane, I find through writing (iPad on belly) the last unlittered chamber in the house M.E. built, where illness hollers curses through the door, but cannot enter, overwhelm. Creativity is my most consistent companion, the best part of me, affected by illness, yes, but not dominated. A way to speak when speech fails, and if lucky, a way to connect.