This week, I would like to introduce you to Donna Grant who lives with Fibromyalgia and Chronic Lyme Disease and writes about her experiences on her February Stars blog. Here she talks about her experiences and living well with her chronic illness.
“My top 10 countdown for living with dysautonomia and EDS”
It’s been a few years since things went awry with this body of mine. I’ve now got myself to a much better place but it’s taken some effort to work out what’s worked and what hasn’t. So, I thought it was time I took stock and wrote part II of my Goldilocks ‘just right’ plan in the form of my own top 10 countdown for living with dysautonomia and EDS!
So here are the “hits” for your enjoyment…
Living with dysautonomia and EDS – “My Daily Specials of Dreams, Hangovers and Fatigue”
This is me. The dreamer. The hungover. The fatigued. Daily specials on my menu of life. Here’s a taste…
Every morning, to varying degrees depending on how busy my day was previously, I wake in a fog. A pea soup kind of fog. Feeling like I’ve been somewhere half the night.
In another mad dream. With people I don’t know, writing the story as I go. Continue reading Living with Dysautonomia and EDS – Chapter 11 “My Daily Specials”
My latest musings on living with dysautonomia and EDS that I shall call “The Rise and Fall of the Red Card!”
A tale of attempting silence by non verbal cues in my house… (Anyone that knows my house will know where this is going…)
Talking and laughing, the things that we all take for granted, are the things that I can no longer do a great deal of. Which is a complete shit because, hey, who doesn’t like doing those things? It’s called fun, right?
What it feels like living with dysautonomia and EDS – like I’ve joined “Adrenergics Anonymous”!
Adrenaline, my adrenergic tendencies and I have become very acquainted. It’s my side kick in life.
It’s a bit like your favourite tipple at the pub when someone asks ‘what’s your poison?’. You lap it up at the time but suffer from the effects of it big time when you’ve done it to excess. And having had to live with the excess side of things since 2014, when my body just went completely haywire, I’ve become quite knowledgeable about its impact.
What it’s like living with dysautonomia and EDS – what it means to be a spoonie and manage your day according to spoons. Note: nothing to do with spontaneous acts of spooning – sorry to disappoint! 🙂
Spoonies I’m in some strife and I need your help with my pacing strategies.
This is your call to action….. (Everyone else, strange ‘spoonie’ and ‘spoon’ references will become clearer….)
Life these last few weeks has been ridiculous. This crazy, stupid, mad woman has been cramming just too much in. My pacing strategies have gone completely out the window. And for what? To try and earn some god damn money. Damn it. Continue reading Living with Dysautonomia and EDS – Chapter 8 “What it Means to be a Spoonie”
What living with dysautonomia and EDS feels like – introducing…”Grog the Head”
A friend of mine who made a daily appearance for 6 months, stopped for 2 months and has now come back again is Grog, as I have now named him (aka bear with a sore head). When he’s in full swing he’s like the hangover (with full on banging migraines) that won’t go away and, over the last 12 months, has become a pretty consistent member of my crew. It seems it’s all part of the delightful bag of tricks this weird condition brings. Continue reading Living with Dysautonomia and EDS – Chapter 4 “Grog the Head”