"Agony" Aunt: Safe Movement During a Flare

I wrote a letter to Jeannie di Bon

As I have mentioned a few times recently, I’m having a bit of a flare up. This substantial change in capacity has meant that I’ve had to spend significantly more time than usual resting in bed. I’ve also had to dramatically reduce what I’m doing in terms of my EDS body management.

As a result, I’ve been experiencing more pain and injuries than usual because building (and maintaining) strength and stability is something I have been focussing on a lot over the last several years. I know it helps me, but when I have “dips” I find it hard not to get frustrated and worried that all the hard work I put in when I was more able is just going to go down the drain because I can’t keep up with my usual programme (which, it’s important to note, is on an upwards trajectory).

That, of course, is an emotional response. But is it true? Does it have to be “do all the things” or “do nothing”? How can I find a way to balance the needs of my connective tissues with my increased need for rest?

In the first of what I am deeming The Rest Room “Agony” Aunt column (getit?!) I wrote a letter to friend of The Rest Room (and overall EDS movement guru) Jeannie di Bon. I asked her to share her advice for those of us struggling to balance the physical issues that can be caused by prolonged bed rest.

Her response was a reminder that it’s about so much more than just “do this exercise” and really helped me recontexualise managing my pain and subluxations during this flare. It has made me feel more hopeful and less frustrated.

If you haven’t already listened to our episode “Fear, Pain & Hope: Movement with Hypermobility” I really recommend it.

Here’s what I sent her:

Hi Jeannie,

Today I wanted to talk to you about something I've been thinking about a lot over the last few weeks: the tension between the things I need to do to manage my EDS, how that changes during a flare-up, and the unfortunate (and painful) knock-on impacts that can have.

For context: I often feel like my pain and "EDS general body management stuff" and my fatigue are at odds with each other. I know the things I need to do to work on getting stronger, of feeling safer in my body. When I'm managing well, I can balance this better with my fatigue.

But when a fatigue flare comes along - it's something completely different. I can't keep up with what I did in terms of my PT, but also the amount that I move and spend outside of my bed is also dramatically altered.

Because of this, I've found myself with new injuries, subluxations and spasms, and the increased pain obviously doesn't help when you're fatigued.

I've been trying to figure out the best way to keep as active as I can, even though my capacity is significantly reduced. I know that I can't expect to be able to do what I could when I was in an upswing - but I'm concerned that the fatigue is only going to make me go backwards physically. And to be honest, I don't want to be dealing with this severe increase in pain either. Timing, body!

At times like this it's hard not to feel stuck, frustrated. The hard work I've put in over the years is still there, I know, but my physical abilities have gone down so dramatically, it can be difficult to cope with that fluctuation.

My PT is brilliant and have substantially altered what we do in our sessions, focussing on extremely light and slow mobility. But that is only a small slice of a week.

What advice would you 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 how should I be thinking about this as I try to start thinking about convalescence from this flare up.

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And here’s Jeannie’s response to me: