kaberett | Exercising patience

At the beginning of July, I (very resentfully) joined a local gym.

Back in 2016, the UCH hypermobility clinic provided me with a series of group exercise sessions based around gym work and Pilates. Hydrotherapy was on offer, but as I didn't want to do it (because of how long it takes my hair to dry) and they didn't want me to do it (because I have not-asthma) I had no experience with that.

Turns out, contra every single previous physiotherapist I'd ever seen, that there are ways to make strengthening exercises helpful to me, as opposed to actively visibly harmful, and it involves dialling stuff way down past the point they gave of "... we can't really get any gentler", and also, it's nice that the exercises you're prescribing sort out 90% of people in six weeks but as it happens I'm a longer-term project than that.

(If I sound bitter, it's because none of these people, lovely though they were, actually picked up on the hypermobility, and none of them had any idea how to help me, despite their being trained professionals.)

It turns out that the single most important exercise for me to do is balance work. If I stand on one leg for 45 seconds, three times per side per day (or every other), then even if I'm not actually engaging my arches and even if my hips aren't in any kind of alignment and nor is the rest of me and even if I've decided the entire damn' thing is so boring that I'm not going to advance to "doing it with my eyes shut" because it's better to do it with my eyes open (because I'm reading) than to not do it at all -- I get stronger.

And once I've been doing that for a couple of months, starting with orthotics and progressing to bare feet, the tiny muscles taking up my collagen's literal slack and stabilising my knee joint have improved enough that I can add leg stretches to the regime. Sit on a hard surface, legs extended in front of me, rotate my legs to as close as neutral as I can reasonably get, hook a long belt around the ball of my foot and pull it toward myself, feeling the stretch up both sides of my calf (and usually the hamstring as well). Thirty seconds, ideally in batches of three sets of five reps per leg. In practice, of course, the likelihood of me managing three separate physio sessions a day for the same exercise is approximately negative, so instead when I'm actually keeping up with this one I do one set of five reps per day, increasing by one rep a week (if and only if my knee isn't grumbling; if it is, decrease to every other day and be even more gentle about the wretched stretches, and so on), until I'm at ten reps per leg per day.

Once that's stable -- once I've strengthened my small muscles enough that it's safe to start ratcheting down the tension on my large muscles without all of my joints collapsing out from under me -- I can start thinking about going to the gym.

This is where pacing's dirty little secret comes in. You know, the one that absolutely nobody for at least five years was willing to admit to me: "okay," I say, "but I can't, actually, walk for ten minutes every day, because some days I can't get out of bed, so how do I handle that in this model?" "Just do what you can definitely manage," they replied, "every day."

That "every day" is, my dear readers, A Lie. (It's probably worth noting at this stage that while I do have chronic fatigue, it's secondary to endometriosis and to hypermobility-type Ehlers-Danlos Syndrome and to chronic depression and to constant sensory overload -- I do not have Chronic Fatigue Syndrome/ME, for which it's been pretty conclusively shown that Graded Exercise Therapy + CBT is a terrible fucking idea. If you want references, prompt me and I'll dig them out.)

Here's what starting out at the gym looks like for me:

I cannot go more than once a week.
I cannot use the treadmills or the ellipticals because of the dodgy knee; I must avoid cardio + weight-bearing on it.
My cardio consists of at most 90 seconds on a stationary bike (upright or recumbent, depending on which my knee complains about least), with the resistance set to at most 2.
I am allowed to do one set of five reps at the lowest possible weight on each of the following guided machines (no free weights for you, Alex!): leg press; seated machine fly; seated rear delt fly seated leg curl; seated calf raise; hip adduction; hip abduction.
On gym days, I am to do no other physiotherapy work.

Every single rep is to be done as smoothly and slowly as possible, paying constant close attention to limb and joint position -- guess how much harder "proprioception fucked because of autism and hEDS" makes this. For lower-body exercises, I'm to take e.g. my knees to the limits of their range of motion on the leg press without locking the joint out: the idea is that it's precisely at the extremes of my RoM that I'm most likely to do myself damage, so there's no point just strengthening muscles in the "normal" range of motion; I also have to work on muscle strength out to my extremes, such that my joint is always going to be properly supported, and I'll stand a much better chance of recovering from stumbles and trips without falls or injury. (UCH advises against reaching for edges of RoM for upper-body exercises, on the grounds that it's much easier to pop your shoulder out if you're not being incredibly careful.)

If it feels insultingly easy, I'm allowed to increase at most one of sets, reps, or weights, by the smallest possible increment, at most once per week. If it's merely straightforward, I have to hold steady.

As I say, I resentfully rejoined the gym at the beginning of July. I'm now at three back-to-back (rather than circuit-style) sets of six reps each at around 11kg on all of those machines; I'm up to three minutes at a resistance of 3 on the stationary bike at both the beginning and the end of the session. My knee grumbled briefly for an hour or so yesterday after the session, and now is fine again, so next week I get to up to seven reps per set. I'm aiming for three sets of ten reps each, at which point I'll start -- very slowly -- increasing weight. And maybe, if I really feel like pushing the boat out, bump up to two sessions a week.

It is both incredibly frustrating and producing meaningful, measurable progress, though I have to remind myself of that latter point a lot. So I'm going to keep doing it, crossly, and I'm going to keep working on remembering that it works, and that the frustration's actually a good sign because it means I'm not doing cumulative damage to myself.

The key points for me were:

you gotta start out with the balance work and, eventually, the stretches
for me, "once every week" is a vastly more achievable starting point than "every day", because I very rarely have entire weeks that I'm completely laid up
no, really, start infuriatingly slowly: if "sit up slightly more for thirty seconds once a week" is your starting point, it's your starting point

But in much the same way that most parts of the NHS will strongly discourage you from using any kind of mobility aid, turns out most parts of the NHS (and even private physios), being fundamentally people who are well enough to hold down jobs, are incredibly reluctant to say that rather than try to wheedle you into an outright counterproductive amount of exercise from the get-go.

In practice, my current (theoretical) exercise regime looks like:

hand physio (~1 hour, theoretically three times a day, hahahahahaha)
foot physio (10 minutes with a wooden rolling pin)
leg stretches (see above)
balance work (see above)
quad strengthening (leg raises with body weight only, starting out with no hold and gradually increasing the length of time I hold at the top, x5 per leg, in a row)
forward leans (seated, slow, paying attention to each joint of my spine, x5)
backward leans (slump against seat with mid-height back, place hands behind head, lean backward feeling stretch across top of shoulders, x5)
twists (cross arms in front of self and twist upper body, keeping chin in line with sternum, x5 left + x5 right)
resistance work (hip abduction with resistance band, x5)
walking backward (3x ten steps, eyes closed)

Do I do all that every day? Do I hell. Additionally, I'm theoretically working up to one Pilates session a week, to go with the gym-based work.

But: provided I'm doing the balance work and the stretches, it all helps. I'm not going to stop splinting my fingers (or my wrists, overnight, as necessary) -- they're rather less well-supplied with muscles. If I had routine access to knee and elbow braces, I'd only be starting to use them at the point at which I could feel the small stabilising muscles giving up for the day. The increased strength leads to (somewhat) decreased fatigue. I've learned a bunch about physiology, and finally have an answer to my longstanding question of "okay, but if hypermobile folk need their muscles to work three times harder to provide the same amount of joint stability, why SHOULDN'T we just splint or brace, given chronic fatigue?" -- that being, approximately, "it's fine for the range of motion the brace permits but means that your stabilising muscles are going to get even weaker at the extremes of your range, due to disuse, increasing the risk of injury any time you're not braced, even if it does otherwise provide support equivalent to what your ligaments should be doing".

It's progress. Towards the grave, inevitably, but nevertheless: progress.

If you'd like me to expand on or clarify any of this, please do say.

Flat | Top-Level Comments Only | Expand All

From:

flippac

This all figures. Even my own experience says "fuck every day so, so much".

I'm glad it's going places for you.

From:

kaberett

... after a year and a half or so entirely off the horse... I'm a bit concerned about how much it's all going to go to shit again once I'm back at work, but hey, I'll do my best.

From:

redbird

I'm in a very different place than you in terms of exercise (because we have both different symptoms, and different underlying causes for those symptoms*), but I am impressed with your persistence in figuring out what works for you. Also, the trainer and physical therapists I have worked with all agreed that taking one day a week off, and doing most of my exercises at most every other day, is sensible.

*I suspect that one place physiotherapists (and less-trained advisers) can go wrong is not realizing that (for example) balance problems that go with EDS and sensory overload are different from balance problems that come from multiple sclerosis, and may need different approaches.

From:

naath

My MS related balance issues appear to boil down to "I can't feel my toes" and I have had to learn visual cues to replace toe ones. Which sounds utterly different. Most physios I have talked to specialise in healthy people with running injuries, these are not the physios sick people need.

only by balancing move

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