If not this?

I am admittedly all over the place with these posts. One of the first things I learned when studying was to know your target audience, know your message and know what outcome you want to achieve when you write. Right now, I don’t know any of those things. Instead I can say I have dual motivations: whimsy and catharsis. That’s it.

Today writing this is a very kinetic experience as my vision is realllyyyyy blurry. That’s with glasses. Another trick of this illness, symptoms vary from day to day and that includes eyesight. If there was a candid camera trained just on my eyes today I would look like I had multiple personalities trying to get out: squinty, blinky and roll-ey.

eye expressions

My eyeballs feel like they’re covered in a thin film of translucent glue. Maybe they are? Is that possible? Can my body make it’s own eye glue? Wouldn’t surprise me.

So it’s been really hot lately (southern hemisphere disclosure) and that means if there was the chance I *might* go outside, that chance is taken and dashed by some muscly cartoon man against a cartoon brick wall until, anthropomorphised as it is, it sees little yellow birds floating around its head and slumps, inert on the cartoon pavement. No chance. Hot weather can really mess with those of compromised health. If you’re feeling keen to learn more then feel free to Wiki it up, here. Heat intolerance can be a real drag.

While not leaving the house, I like to keep my mind busy and engaged. By ‘like’ I mean I know deep down that if I don’t I might end up chewing my shirt and talking to my hands. There’s not really choice there, free will blah blah but I know not to play with fire. Luckily I’m interested in lots of inane, and less inane, stuff. Yay for me. I’m also fairly limited in what I can do at the moment, physically, due to my degree of illness.

A recent Dr visit showed my standing blood pressure was 80/60 – which is low and why I don’t do well standing for very long. I think most people will find, standing (and its friend, walking) are generally how they get around. Most people. Some need wheelchairs and maybe some may have secretly mastered the art of flying – but the probability for that is definitely, you know, not high.

Flying cat

(legs! where are the legs?!)

So I’m talking about the majority here. I’ve certainly found standing and walking are pretty much crucial to a very wide array of human activities in my life so far. Not being able to do them easily has made my experience of life very different. Sometimes I feel that we (the chronically ill) inhabit this underworld aspect of life. Imagine Gotham (or any dystopian city you fancy, really) and we’re there but we’re like down in the dingiest warehouse or in the sewers. So fringe, it’s not even cool anymore.

We’re still here on the same planet, but damn is it a whole other space to inhabit. It estranges us from others, but can estrange us from ourselves too. Yes, I’m getting existential. It happens.

complex carbs comic

(A friend actually sent me ^that on a card around the time I had to quit my job a few years back and I love it. Cuteness.)

While hanging out in the Unwell Underworld I’ve found freedom in being able to go online. I know from reading the blogs and comments of others with this condition that they feel the same way. It’s one of the few things I can participate in where I feel equal with the healthy people. My access to information is equal and I can get around any handicaps (symptoms du jour) by participating as much or as little as I can manage. I’m so grateful for that.

The title of this post came about because today I stumbled on these interviews with female actresses talking about their work. Here’s Dame Helen Mirren and she makes a point I totally agree with: every single person has a story in them. Just by virtue of being alive. I’m so interested in personal stories. Rarely is anyone simple or straight-forward, instead we’re all: layered, faceted and complex with secrets and desires and fears and dreams. And and and. What’s grammar? Your mum’s mum? Ok then.

ogres have layers

(Then there are the Donkeys of this world…some of them, I have found, are entrenched in our medical system…don’t worry, I’m not getting on the soap box… not today anyway.)

I watched these famous people talk about their work and they all seem really inspiringly passionate about it. Then I get that fire in my tummy which comes when I feel inspired ( fun fact: the word inspire has it’s roots in Latin from the word inspirare which means ‘to breathe or blow into’ …isn’t that cool. When we’re inspired it’s like we’re literally breathing in fresh energy. Words. Just love words.) and I want to do something with it. So, so badly.

blow glitter

This is the part where it gets tricky. Wanting to do stuff, I have learned, does not necessarily correlate with ability to do stuff. I’ll just pause here with some folksy music while you reflect on that last point. Sorry couldn’t help myself. But I am completely serious. That’s why I put it in bold…to show the seriousness. This is honestly one of the hardest things (ok, no more bold) that happens when you get an invisible illness. People that you know: friends, lovers, family, work colleagues, acquaintances, the post man…on the whole, will not understand why you can’t do things. Particularly if you fell ill fairly suddenly or took a sudden turn for the worse.

The degree to which you cannot do things (some can’t speak, stand upright at all, eat by themselves…others may be able to pass as normal sometimes and then collapse in private – I fell into the latter category for a few years and have spent recent years more on the ‘not able to pass as normal’ end of the spectrum) will impact the relationship accordingly. I hear time and time again the pain this causes for sick people who not only have to contend with the losses of their former life and abilities, but often also the loss of the support and care of people close to them. It’s like life digs the knife in twice.

illness happy meme

I can see how it’s hard looking in from the outside, to understand. I think once we reach adulthood most people have had at least one experience of hardship to contend with, it’s a guarantee that we’ll all get dished out something eventually. Then, I’ve found, it’s often the case that people who go through something become very sympathetic to that issue for others. It might be a relationship breakup, mental health issue, financial problems (maybe lost a job) and there’s this sense of immediate recognition and support for the person experiencing that. The same thing doesn’t really happen with complex chronic illness, especially one as controversial and maligned as Lyme Disease.

not sure if

It’s hard to conceive of how sick you can be… but still be alive. It’s hard to believe you could spend years unwell and mostly housebound and still somehow stay sane. I think this leads some people to think it can’t be as bad as sick people make it out to be. Believe me, it is!

Some people dress up the experience and reframe it as a great opportunity for spiritual growth, fate, the calling of the soul. At times I have clung to these notions with white-knuckled tenacity and I don’t wholly disagree but there has to be a lot of room for ambiguity and uncertainty with complex chronic illness. It’s not helpful to deny the hefty serving of crapola that comes with it, when pain is acknowledged it loses some of its sting.

Perhaps the single most important thing I’ve found (and I think I mentioned this in another post) is to do what gets you through…within reason, right? Don’t go sending letter bombs in the mail to let off steam. But if you can extract anything positive from the experience of chronic illness – fantastic. That doesn’t mean it’s not completely shite. The two aspects can and do coexist.

I’ve met some amazing, funny, resilient, cool, compassionate people going through the same thing as me. That’s a positive. But it doesn’t mean, when I watch inspiring videos of beautiful, talented actresses talking about stories, creativity and a fulfilling life that I don’t feel grief for what I’d like to do, but can’t. My body feels like a prison much of the time.

behind bars

With every year that passes, I feel panic sidle up closer to the grief as I think about how long this is taking and how old I’ll be when I feel better (I say when, not if, because I’m not entertaining the possibility of not getting better – if not cured then in remission) and how on earth I’ll resume a normal life again.

The title is “If not this?” which is what I was contemplating earlier today. It’s impossible to know where I’d be now if I’d remained well. I can say with considerable confidence though that I would be employed, financially secure, physically active and very social. None of which I can claim are the case now. It’s one of those sliding doors things where you can’t ever know what would have happened but it does play over my mind fairly often.

fork in road

Times like this, it’s just day by day. A few good tunes never hurt, a hug, talking to those who know and understand and just taking a big breath before making the commitment for the 100th time to keep on trying. As long as you’re still trying, you can never fail…right?! I like to think so.

baby weight lifter

This kid knows what I’m talking about…awwww look at that little face.


2 thoughts on “If not this?

  1. Maree

    Yes, “my body feels like a prison” is something I have said over and over to people who struggle to understand. And the thing they actually got the message through to some people was “it feels like the worst hangover you’ve ever had but it never stops”. That was when my dear, compassionate empathic husband really got it, deep in his gut. Something from his own experience he could relate to.


    1. Zoe Gets Wordy

      I’m glad your hubby was able to relate to that description and could empathise with you. I think conveying the experience as being far beyond ‘just tired’ is one of the challenges we face – it’s tricky when symptoms change all the time but the ‘feeling like my body is full of lead’ is one I use as it’s been a pretty consistent one for me. But yes, often it helps if the other person has some reason to empathise because they’ve felt something similar or some other reason. I’ve found if someone doesn’t want to know, then no amount of explaining will convince them and I’ve found it best to distance myself from those people over the years otherwise it’s just a mess of constant misunderstandings and expectations I can’t meet! May we be liberated from our body prisons very soon – hope you’re still going well Maree and thanks for your comment xx


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