Rhythm is the new balance.
A shift in perspective, from a wannabe Vulnerabilist.
This morning marked the 40th blood test I’ve had this year, though I graced a new locale this time having recently moved abode. Same drill, different person, a subtle shift in technique. Good chat.
On my way back home over the Waitakere Ranges, winding my way down to Piha, I took stock of the recent “manifestation” of life changes. I knew I needed a shift in perspective, and so that’s what I got. Lock, stock and all of the barrels, as usual, not done in halves — we’ve gone full Pihaian. As chuffed with myself as I am for having made such a big call, and delighted with my family for being brave enough to support this new curve ball, it’s not lost on me that there’s a lot of privilege at work here too. Not to discount the ‘hard work’ applied over a very long time to get to this point, it feels crucial to acknowledge that “manifestations” feel like the domain of the entitled (something I have no desire to act like).
As I putted along with that thought swirling about the grey matter, I crept into considering how my day had started; grumpily. Aches and pains had kept me awake, and the fitful sleep had made for a tired Nene this morning and perhaps a little more sensitive to the usual hustle & bustle from from other half going about his leaving-too-early routine. I grumbled snarkily from under the duvet, demanding activity volumes to be muted and petulantly rolling over (and ouching out loud every time). Anyhow, the point of this disclosure was that I was feeling a little guilty about the moaning now that I was fully awake (nothing like a stool sample kit to clear the cobwebs). And as I processed what had led to my short-lived-short-temper (I never stay grumpy for very long) I started to think about why I was in pain, AGAIN. It’s an ongoing battle that just won’t go away and after many, many months of exclusion diets (I’ve tried them all) and in spite of some substantial success (brain fog lifted, weight dropped, energy levels improving, tinnitus gone), the aching body keeps coming back and nothing seems to be the root cause. It just is. Last week one of the specialists diagnosed Fibromyalgia, which is a little bit like being diagnosed with Irritable Bowel Syndrome (which I have too) — they simply don’t know what causes it, other than it occurs after a nasty virus and it doesn’t usually go away, it may subside though. The number 1 recommendation is that you see a psychiatrist, which of course immediately makes you feel completely bonkers and that it’s all in your head. As if Long Haul Covid doesn’t already feel like a mind game that no one gave me the rule book for. Sometimes I wonder if we’re all being tested to just see how we react to each new symptom thrown down.
And then it dawned on me. Letting my defensive guard down for a bit and leaning into the wisdom actually being imparted (acknowledging that the doctors do spend a long time at medical school…), I realised that they weren’t telling me that I was hypochondriac, but more that I simply can’t let it get in my head that I am! A subtle but very important difference. The former being what I feared they were saying and the latter being the reality of what was actually being said — that if you’re not careful, this condition will drag you down. You have to gear yourself up for a long game, work out strategies to cope and ensure that you’re not telling yourself that you’re not good enough, not strong enough, not smart enough, not positive enough, that you’re actually fine but not capable of it (whatever it is). When, in fact, you have to learn to accept living with it and try doing things to make every day a wee better (like moving to the beach), but that there probably won’t be one cure that fits all. There’s unlikely to be a test they can give you to make a diagnosis that will match how you’re feeling. It might be up and down forever, but keeping your head in check will be crucial for having a good life. It seems obvious now that I type it, but of course that’s easier to say from the outside perspective. Looking down on it, I can see it clearly — I can see it when I’m talking to other long-haulers, those in the thick of it. But from “in it”, it’s demoralising and easy to get tripped up and discouraged and spiral further down. I’ve had three specialist appointments in the last week alone, as well as more blood tests, ultrasounds, stool and urine samples taken, cameras going in, around, about, needles poked, muscles prodded, endless questionnaires — it’s invasive. I’m every doctors professional guinea pig. All I want is to feel….well. Sometimes doing none of that is better for me. Sometimes gathering data helps me feel better. I have to pick my battles.
So here I am, writing this, looking out to sea on a stormy Tuesday afternoon. Lion Rock dominating the vista. My work list is checked off for today. I’ve been for a walk in the rain. Nothing gluten, caffeinated, with sugar or dairy has passed my lips, it’s all coming up vegan, and I’ve consumed a handful of make-it-better-please supplements each designed to fast-track the process (or lighten my wallet at least — which it’s excelling at). I’ve programmed a home network (badly, but I’m learning and quite enjoying the process), organised (another) cupboard, had a health coaching session and booked in for a colonoscopy (rad, more detoxing). Meanwhile, the waves have kept crashing into the shore and the occasional bit of blue sky has poked out when it’s been possible. I like the blue sky’s attitude. My cat is still missing, but my Dog is at my feet and his paws are sore from too much beach walking. Tough gig for him. Wednesday we’ll go to board riders club (not that we ride, but the kids do) and Saturday there’s a local pool competition (can I play if I don’t drink anymore? Who knows? Unlikely very well). The point is, that it’s all-ok. It’s more than ok. It could be a lot bloody worse (and also, I’m not into giving a ‘you could have it worse’ lecture, that’s just demoralising and unhelpful). But I could. Perspective is helpful.
And each week I learn something new. This week I’ve learned that where once I used to be shocked by the age of the new doctors coming through (and looked at them cautiously), now they’re my favourite and preference— they’re open minded, they research western and eastern medicine and they have wonderful beside manners. The old school simply doesn’t suit my requirements anymore — not when a pandemic that’s attached to inflammation, gut health and immune response are involved. Those in the medical community in New Zealand are being mostly sheltered by the realities of Covid impact (due to lack of people here having had it) and therefore I need those in my crew who are actively looking to understand what’s not in front of them (many simply just don’t have time, and that’s okay too). It’s a tough lesson to learn and it’s easy to get pissed off about it (as many in my support group do), but the reality is that everyone learns at different speeds — you just have to seek out referrals to ones who are empathetic and inquisitive. I’ve changed a number of my “team” to get the right mix. What we can all agree on is that magnesium is everyone’s friend, weekly vitamin B shots made a sizeable impact and the jury is out on the helpfulness of vitamin C infusions on the gut.
In reality no test can change the way the year has panned out and I’m ok with that truth bomb. And 2021 isn’t the miracle cure you’re hoping for. But I’m not sure I would change anything now, it’s turned out the way it has and I’m making the most of it and I plan on enjoying it. Like everyone, really. We’re all impacted somehow. Some more, some less. It wasn’t sustainable how I was living (kind of like how it wasn’t sustainable the way the planet was being treated and the way we were all living) and I was killing myself working myself into the grindstone. No more apologies for it, I’m done with that way. It’s a shame it took a global pandemic, but how else do you stop a tornado?
Some say we make our own luck. I’m not sure about that. I know that we can make the most out of situations that are in front of us, if we’re lucky enough to have the means to do so. Many people are at the mercy of other people’s empathy and consideration to get their bit of luck. But perhaps we’re all capable of shifting our perspectives and when we do that, another potential pathway becomes open to us. I can only speak from my own view point, and from the pathways I’ve seen so far. But I’m open to new ideas and ways of living that I never thought I would be and that’s leading me to a place that feels calmer, happier, healthier, less intense. I’ve shifted my perspective on what “wellness” means to me, the goal now is simply building a rhythm. It’s not good, nor bad, it’s not well or unwell. I can see now that it’s about flow, allowing for it to ebb and move. The full spectrum, living across it as lightly as I can. My job is not to try and control the rhythm and make it even, but gently move with it.
