“You are not a patient”

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I saw my GP last week. I wanted some advice about muscles aches — not the regular over-asana’ed ones. The bone-pulling, dead-weight, so stiff you feel about to snap ME-style ones that make any travel further than the bathroom seem like an impossibility and holding arms up long enough to shampoo hair takes serious effort. Muscles groan even at rest, even skin is massively sensitive. Don’t touch me! I am glad I only feel like this on off-days, not every day, but I still don’t know how best to look after myself.

“I don’t keep up with the literature any more. So what’s the latest advice about exercising and ME”, I asked my doctor. She grinned at my declaration of ignorance — time was when I used to summarise for her the reports she’d not yet read. It turns out the story is still conflicting: medics advocate ignoring muscle and joint symptoms, patient groups advocate listening to them and resting. Still no-one knows what causes ME sufferers to feel this degree of unusual discomfort so it’s hard to advise an appropriate response. My doctor talked about ‘chronic deconditioning’ from years of reduced activity levels. Exactly what that means isn’t terribly clear to me, but she wasn’t surprised when I said that a physio had once told me that my experience of pain wasn’t matched by the degree of joint displacement and  injury she could measure. My neurons were firing over-zealously, apparently. Trust my neurons to be overachievers!

So my doc’s advice essentially was to take analgesics and get on with it. ‘It’ being life in general, as well as yoga specifically. She reassured me that even if I feel bad (and the assumption is that I would from time to time), it’s not something that a few days resting isn’t going to fix. I won’t actually do myself harm and I won’t be heading into relapse territory, which I guess is what I’m fearful of. I had long years of living a a half-life and I don’t know how I would face doing that again. But apparently I’ve been on the upward path for too long now, so serious relapse is unlikely. Though after ascertaining how vigorous my new activity level is when I’m feeling well, she cautioned me against training for a half marathon! In my dreams…!

She concluded: “You are not a patient, you are handling this. Have faith in your body’s ability to heal itself. Allow it to do that.” She sounded suspiciously like a yoga teacher. Apart from the bit about painkillers, I guess!

I was still nervous. I’ve never in several decades been given this kind of gung-ho advice. And I am used to those around me wanting to wrap me up in tissue paper and protect me.

Returning to my fundamental fear, I asked “But what if I overdo it?”

Her response was more robust still: ‘I want you to overdo it! Get out there, and do it. Live your life!”

I’m adjusting to the new me, and I have been gradually for a few years now as I feel less and less sick overall. In reality this conversation with my GP changes nothing. But right now it feel as though it changes everything.

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image source: http://www.pcrobinson.co.uk/home/about-me

8 thoughts on ““You are not a patient”

  1. I can very much understand the fear of relapse. I always feel a little nervous when I’m having a better stretch—hoping it will continue, but wondering if or when the other shoe is going to go: PLONK! But it’s so wonderful that you’ve been feeling so much better. If you don’t mind saying, is there something to which you attribute this?

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    • I’ve been thinking how to answer this Diana, so apologies for the delay.

      For me (and of course you know we’re all different in our experiences and trajectories!) I think acceptance of how I felt physically and shedding the guilt and shame of chronic invisible illness were really important as a first step. I worked with these feelings through Mindfulness meditation techniques through which I came to learn that avoidance was not so helpful (creating fear and tension, and therefore wasting energy and creating stress). I introduced gentle mindful movements as part of my meditation practice and then as I felt physically stronger I naturally wanted to focus more and more on asana practice. I think the physical exercise was also really important — in boosting wellbeing, in somehow creating energy as much as it was physically tiring, and in continuing the mindfulness techniques in a different way and helping me learn more skilfully to handle physical and mental discomfort.

      I hope that makes some sense to you. It’s just very brief thoughts. Please do get in touch with me via email (on my About page) if you’d like more of a conversation.

      Thank you for your comment on the fear of relapse. This is always a shadow for me, but it’s good (in a way!) to hear that you feel this too — it’s surely a normal reaction.

      Liked by 3 people

  2. Thank you for writing this – I completely empathise. My ME/CFS has been acting up lately and I always try to push through. I’ve been locking horns with this illness as soon after diagnosis as I was able – sometimes it works, sometimes it doesn’t! Lately it hasn’t!

    Like you, I fear over doing things and fear living life as I did before, it was refreshing to hear what your GP said although after a few recent setbacks I am unable to do the walking (not very far) that I had previously built up to. I’m guessing yoga helps? I might have to have a go at 10 minute Pilates once the dizziness stops. Let the fatigued muscle shakes begin 😉

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  3. Hi Doddyduck, thanks for getting in touch with your comment. sorry to hear you’ve having a bit of a setback right now.

    If you’re having a rough patch and physical activity levels are lower maybe try just some gentle stretches, rather than thinking about pilates/yoga in any structured way. Just linking some really simple movements with the breath (e.g. as you sit in a chair inhale as you raise arms – or one at at time – upwards as fas as feels comfy and then exhale down again). this kind of movement can be possible even on grotty days for me at least. for me yoga started with some gentle explorations of how nice physical movement can feel — but it doesn’t need to be anything fancy.

    feel free to email me (address on my about page) if you’d like to chat further privately.

    I hope you pick up a bit soon. It’s not the best time of year, is it?

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