Thread by @natashalipman

One of the things I struggle with when I'm having a fatigue flare up is the impact it has on my #EDS symptoms: less movement/strengthening = more pain & injuries.

I've been having a hard time not getting frustrated by this, so I wrote a little "Agony" Aunt letter to @jdibon. 🧵

I wanted to know how can I balance the substantial change in capacity and respecting the extra rest and time in bed that my body needs with the things I know I need to do to manage my EDS issues.

I asked what advice would she'd give to someone in a similar position? How can we start thinking about the safest ways to move our bodies through increased times of physical stress and fatigue? What are the benefits of finding ways to keep moving in these safe ways?

And, importantly, how should I be thinking about this as I try to start thinking about convalescence from this flare up.

Here's an insight into what she told me:

"Fatigue is a very common aspect of living with EDS. Fatigue and pain are the top reasons people do become less active and stop exercising. This is totally understandable, but it does have consequences."

"When we feel in pain, it can cause increased fatigue and stress. We can become anxious and worry about the impact this pain may have on our lives. This can often make us decide to move less."

However, the lack of movement with a condition like EDS can lead to more pain, as we can become deconditioned quicker than other people.

"With deconditioning, you could start experiencing more injuries and subluxations too. If you have increased pain, you are likely to have more stress and fatigue. The cycle continues and it can become difficult to break."

She told me that this cycle CAN be broken. We need to respect our fatigue, and not push ourselves.

That there are things we can do, even during these more challenging times, to keep our tissues hydrated and healthy.

You can read the letter @jdibon wrote to me, full of kind, empathatetic advice for how to keep incorporating SAFE, approropriate movement for EDS during a flare-up.

It's for paid subscribers of The Rest Room but has a free trial so you can read it all!
natashalipman.substack.com/p/safe-movemen…