Rough Nights

As I write this it’s 11.40pm, on a weeknight, when I should be asleep.

I’ve had my fair share of nights like this; there was the month I slept with an ice cream container by my pillow earlier in the year, or even roll back to the beginning of last year when the medication kept me awake with a racing heart and the feeling of poison coursing through my veins – it’s a wonder it took so long to realise how sick it was making me.

Tomorrow morning I’ll have to cancel a 9a.m. meeting with someone I was really looking forward to catching up with. If the level of discomfort is keeping me awake now, it’s not likely to be miraculously better in 8 hours, and although I hold out hope for a brighter morning, I’ll take this as a reminder that I still need to be gentle with myself, and put my physical needs first tomorrow.

I’m not particularly good at that, and whilst these nights can feel like an act of the devil, the silver lining inside them is in fact the angel on my shoulder teaching me, and guiding me along the path to wellness.

Broken? No, just rearranging.

It seems that when you’re poorly for a long period of time, floating in the middle of the health spectrum somewhere between life-threateningly ill and perfectly healthy, a lot of assumptions are made as a result of your circumstances.

Let me elaborate.

“It has been ages, you must be feeling better by now.” – A thinly considered assumption and statement I’ve heard far too many times.

And the questions, oh the questions:

“How can you be sick for so long when it’s not cancer/*insert any other awful illness*?” Or, “when will you be better?” or one of my least favourite variations, “when will you be back to normal?”.

Generally people would (I hope) never ask a person battling a potentially life-threatening illness that kind of question. And would anyone pose a statement like the one above to someone who was, say, grieving the loss of a loved one instead of the loss of one’s health?

Assumptions and related statements/questions also arise from decisions and actions; they tend to be black and white, exemplified in their most basic forms as:

  1. *Attends event/work/appointment* = must be “back to normal”.
  2. *Decides to work from home/cancels social plans* = incapable of any work and disinterested in all social interaction.

Now let’s consider the decision-making process behind the person’s actions, and the subsequent actions not seen and therefore not considered:

  1. *Attends event/work/appointment* = striving for a sense of normalcy despite knowing there are 2 days’ rest ahead in order to recover from the expended effort.
  2. *Decides to work from home/cancels social plans* = balancing responsibilities and others’ needs with the need for self-care, at the sacrifice of some things.

This is the blatant disrelation I’ve found between what is usually assumed, and my reality. Reality consists of middle ground, of compromise; of balancing acts, brave faces and grey areas. Assumptions seem only to identify that I’m either broken, or fixed. Ask anyone else who has walked in these shoes and I’m certain they’ll agree with me.

I’d like to touch on the circumstantial assumptions I first mentioned in this post, and their resulting comments/questions, because it is eye opening just how many people don’t seem to know how best to interact with a person facing “loss”, in this case of course referring to loss of health.

How about asking, “how are you today?” instead of probing the “why” of chronic illness, which only leads to frustration and guilt from not having an answer. Or, “It has been ages, you’re doing so well” instead of a statement that invokes feelings of inadequacy from not being better (or “normal”) quickly enough.

In response to my actions, how about, “it’s good to see you” or “thanks for coming”, and when you don’t see me, don’t assume I can’t still meet my responsibilities or don’t want to do something, just because my body genuinely won’t let me in the usual way. Did I miss a social occasion? I’m still here, and would love to see you – please don’t forget me! (Or do, whatever). Or was it business? Let’s talk on the phone. I’d love to talk with you on the phone! We can run over things via email instead of via printed trees and probably save a whole lot of time in the process, something we can all use more of. Technology is a wonderful thing for that reason ­čÖé

Assumption is one of human nature’s absurdities to impact the chronically ill on a regular basis and has already arisen from the decision I made last week, in conjunction with my employer and staff, to take a step back from work, albeit only physically. The assumption is that I’m broken.

Broken? No, just rearranging.

How This Blog Began

I originally wrote this as my “About” page on 13th June 2017, however on 28th October I’ve moved it to act as an introduction to “The Illness”, as although it was how this blog began, I am feeling the need to exercise written cathartis less frequently now.

It is important to me that I honour the extremely tough period I went through though for it has truly made me, and is what started my exploration into minimalism.

Hi there, I’m Lani, pleasure to meet you!

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Well, this was me in happier, healthier times – sometime in the warm New Zealand spring of 2015 – before I was prescribed two medications for a problem it turned out I didn’t have. I’m still me, but the chaos which ensued beneath my hard-earned 6-pack has turned my life upside down and (nearly) wiped the child-like grin off my currently-pale face as I struggle to regain my health, whilst trying to grow a business and attack the goals I’ve always so tightly held for myself.

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This is me more recently – still Lani, but older and wiser, 10kg lighter and $10,000 poorer. In May 2017 (as I write this, that’s last month) my body finally signaled it’d had enough of pouring out of an empty cup by giving me a “quinsy”, or “peritonsillar abscess” (think pain, needles, scalpels, and a lot of blood), complete with three nights in hospital.

In hindsight I was bound to end up there at some point, but more about that in my first post.

What I’m recovering from is a chronic digestive disorder called SIBO. Treatment is unpleasant and in New Zealand, somewhat experimental and costly. Fortunately it seems likely I will be reimbursed under our government’s “Medical Treatment Injury” cover, since I developed it as a result of incorrect medical treatment. My prior impeccable health has no bearing on my ability to overcome it, and although the severity of the illness inhibits me from living my normal life, the good news is that I will recover fully, with time and patience.

Normal life for me looks like this: 4.45am starts, nice long gym workouts before “work” (I’m one of the lucky ones whose work doesn’t really feel like work in the traditional sense, but I don’t know what else to call it) interspersed with copious amounts of homemade peanut butter. Outside the daily grind lies numerous the odd espresso martini or Gewurztraminer, brunch with friends and family, running, singing and coaching a choir, planking poolside (evidently), playing various musical instruments, “working” some more, reading about everything and writing about finance, food prepping, renovating my home into my dream home, figuring out the least arduous way of cracking open macadamia nut shells from my garden – you know, all the good things in life. I intend to add to, adjust, and re-prioritise these activities once I’m well, which will be exciting and maybe even blogworthy.

Over the last twelve months I’ve found sporadic journalling to be extremely (and, unsurprisingly) cathartic and for some time now have been contemplating making my journey public, for not only my sanity┬ábenefit, but others’ too. You see, the lessons arising from chronic illness are bountiful. They have changed me, they have improved me, they have opened my eyes, such that I feel compelled to share them in the hopes that someone else can learn and grow as I have, without the undesirable catalyst of adversity.

Lans

Denial

For over a year I’ve been walking a tightrope, vaguely aware of the chasm beneath me though largely ignorant to its shadowy depths.

I probably should have taken some notice of it when this happened in February:

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The corridor of Auckland City Hospital featuring an ambulance stretcher and my middle finger.

Or this, a month later:

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Mixing things up with an ambulance ride to Middlemore Hospital.

Or this, another two months later:

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Surprisingly chipper given the spit cup full of blood to my left.

But when you’re a mentally strong person, acknowledging and admitting the existence of that chasm, acknowledging and admitting the possibility that you could fall into it if you don’t change the way you’re walking the tightrope, feels like you’re admitting weakness, and that itself takes immense strength.

Last Saturday, I acknowledged the chasm to myself. For the rest of the weekend I felt like a cat who’d been petted backwards. That night I contemplated what might lie at the bottom of the chasm, the worst thing being irreversible damage to my health. Unemployment or significant disruption to life goals, although only marginally less worse in my mind, are fundamentally feeders of self pride and ego, so therefore I determined them not world-ending, but still prospects that weren’t pleasant to stare in the faces of in that moment.

On Sunday, I conveyed my acknowledgement of the chasm’s existence to others. I finally admitted my precarious position to myself, my parents, my employer, a close friend.

I admitted my chronic denial.

I’ve never been one to do what I’m told, and I have never, EVER bought into the concept of “limits” (what the f*** are they?). Consequently I’ve continually insisted my physical state isn’t being compromised by my optimism, my ambition, my zest; by my unwillingness to slow down.

It is.

The reassurance of those I spoke to had an almost palpable effect on how I felt physically. Each day this past week, I tried my best to work within my physical limits. If I wasn’t feeling up to going out, I worked from home. I can’t express the gratitude I feel to have that option. The guilt of not doing things to the extent I impose on myself, gradually ebbed. It’s still there, and given my nature won’t disappear completely, but guess what? The world didn’t end.

And as long as I push denial out of the way, it won’t.