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”
Exhausted all the time? Dizzy? Anxious? Could it be POTS or dysautonomia?
It can affect you at any age and there are many reasons it can present itself. Perhaps your doctors haven’t been able to put their finger on what’s wrong or you still feel something is amiss? Could it be POTS?
The following article about a young man and his journey to get diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) will provide some interesting insight into what this form of dysautonomia is and how, to the untrained eye, it can be missed. Continue reading Could it be POTS or Dysautonomia?
What living with dysautonomia and EDS feels like – “Me Wiring is Off”
When things went wrong 18 months ago, it felt like a malfunction, like the machine went wrong or like the accelerator got left in the on position. Well yesterday I got validation this is indeed correct. It’s called neurally mediated hypotension. Da dah! Continue reading Living with Dysautonomia and EDS – Chapter 5 “Me Wiring is Off”
My trials and tribulations of exercising with dysautonomia and EDS – “Bite Sized Cardio”
After ditching cardio for 3 weeks to try to allow this body to calm down (with mixed and not very successful results I have to say), I resolved to do SOMETHING. After all the pain my bloody leg muscles went through in Sept and Oct when I restarted exercise I can’t put myself in a position where I have to go through that again. Continue reading Exercising with Dysautonomia – Part 2 “Bite Sized Cardio”
What living with Ehlers Danlos Syndrome feels like – “Pushing through Fatigue”
I just watched a really informative video by Dr Alan Pocinki who specializes in treating patients with Ehlers Danlos Syndrome (link here). Whilst it is specific to EDS and people who have hypermobility the themes in here are very relevant to anyone who suffers from fatigue so read on… Continue reading About Ehlers Danlos Syndrome – “Pushing through Fatigue”
What living with dysautonomia and EDS feels like – “Supercharged out of my Head”
Yup you guessed it, another shitful attack. God, this body is a pain in the neck.
My meds were changed 3 weeks ago because of adrenaline issues, I had reduced my meetings and the intensity of my exercise program and was doing really well.
Then I changed something. Moved my usual morning exercise to the evening last night, evidently when the impact of my glory wonder drugs were at their lowest, and had a sleep from hell. Continue reading Living with Dysautonomia and EDS – Chapter 1 “Supercharged”