A cascade of precise cellular interactions

I cried big fat tears at work today.

It was lunch time and this article popped up on my Twitter feed:

What’s Wrong With Me?: I had an autoimmune disease. Then the disease had me.

The article is all-around beautifully written. It was when I got to this bit, though:

It wasn’t just that I suffered brain fog (a usual autoimmune symptom); and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. It was that I no longer had the sense that I was a distinct person. Taking the subway to N.Y.U., where I taught, I felt like a mechanism that moved arduously through the world, simply trying to complete its tasks. Sitting upright at my father’s birthday dinner required a huge act of will. Normally, absorption in a task—an immersive flow—can lead you to forget that you feel sick, but my fatigue made such a state impossible.

To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.

…that the tears started.

Tears of relief to have my experience articulated so perfectly. Of hopelessness at the reality that this is my life right now. Of frustration that there isn’t more known about this type of chronic illness. Of loneliness – because dealing with chronic illness is fucking lonely at times. Of relief that there is at least one more person in the world who knows I’m feeling this way not because of something in my head or because I’m not trying hard enough.

The worst part of all of this for me, outside of the shear physical toll it’s all taking on my body, is the constant and heavy feeling of loss. Loss of the person I used to be. Loss of my body autonomy. Loss of my fitness that I’d worked so hard for. Loss of my optimistic and positive frame of mind. Loss of faith from the people around me. Loss of friendship from the people I’ve shut out of my life. Loss of self-esteem and confidence. Loss of my previous sense of direction for myself and my life.

And if you’re a person that applies themselves and works hard and historically has just tried to get on with things, it can be really hard to articulate out loud how bad things are. The fatigue turns into ‘my energy levels are a bit low today’. The brain fog turns into ‘I’m a bit scattered today don’t mind me’. You play down the daily struggle to a whole bunch of ‘oh silly me’ anecdotes.

And you try to not die a little on the inside every time someone tells you they know how to fix it. If only you exercised more, exercised less, managed your stress, pushed yourself a little harder, was a little easier on yourself, drank this kind of milk, cut out this kind of food, took this kind of supplement, prayed to Jesus (yes, really), it would get better.

There’s hope in the article though. And with all of it. If there wasn’t, I wouldn’t be going to my PT session in the morning. I wouldn’t be trying to struggle through my new gym program. I wouldn’t be writing here. And there are a whole lot of other delicious foods I would be eating.

I do have hope that it gets better than this, and I just need to hang in there until it does.

Tonight I’m grateful for Meghan O’Rourke, and this article she wrote. It opened up something inside of me today.

A positive thing about myself today: I turn 42 tomorrow and I don’t even mind.

Monday

So, two spider nests in the bedroom have turned into three.

It’s like the Newtown spider community have sent out smoke signals.

I’m going to have to do something about it before they all get too big. I think the answer is one of those bombs you set and then leave the house. That way I don’t have to imagine I can hear their little spider screams as they die.

It’s probably some kind of crazy that I’ve managed to anthropomorphise spiders, but I don’t think anyone who has read Charlotte’s Web as a kid will ever think of spiders in the same way.

I’ve been setting lists of intentions for myself each day and each week, and I’m finding it really useful, but the last few days I think I’ve got overly ambitious. Not so much with my weekly goals, but with what I can get done in a day. I get carried away at the start of the day with how much I want to get done, and then by 3pm I’ve had enough interruptions or new work stuff come in that it all unravels a bit.

It’s fine, and it’s still all positive. I think I just need to be a bit more measured at the start of the day, so I can actually hit all or most of the goals by the end.

Today I am grateful that my mum and niece at coming to Sydney for a visit at the end of the week. We’re going to the Easter Show and I’m really looking forward to it.

A positive thing about myself today: I managed to get a really shitty job done that I had been putting off for a while at work. I actually scheduled it in my calendar and wouldn’t let myself eat lunch until it was done. And as is the way with all things, it really wasn’t that bad when I got into it.

There’s gonna be a party when the wolf comes home

I read this on Instagram tonight:

We must declare ourselves sovereign from harmful narratives about ourselves and one another.

Declare ourselves sovereign.

I like the idea of declaring sovereignty. Often, for me at least, when it comes to minimising negative self-talk it feels like an aggressive exercise. It doesn’t come at all naturally to me, and most of the time I feel like I actively need to push against it and force the positive self-talk to combat all the other bullshit that’s in my head.

There’s so much anxiety for me that comes from that approach. And so much room for perceived (on my part) failure. It can feel exhausting.

Sometimes, and particularly recently, the more I see the people around me projecting positivity, the more I feel on the margins. Like that party is not for me. Like I’m the awkward person at the side of the room that no one wants to speak to lest I bring down the vibe.

This idea of sovereignty is a welcome change of perspective. Declaring myself sovereign feels more peacefully fierce. Like I can be a serene and motionless force. Impervious. Hera holding court for only those who bring her what she needs.

Tonight I’m grateful for the current flexibility in my work schedule. I have given myself Wednesday off, and it’s a joy to have the whole day to myself and not know yet what I want to do with it.

A positive thing about myself today: I got dressed to go out this afternoon and I caught myself in the long mirror on the way out of the bedroom and thought to myself ‘this dress looks nice on me’. This might seem minor, but it’s not. It’s the first time any sort of thought like that has entered my head in a while. I’m not sure what it was about today or about this particular dress (it’s not new), but it caught me off guard in the best kind of way.

The boy took me out for an early birthday dinner tonight. It was lovely, but it has been a massive day.

Sometimes, when I’m truly exhausted, I feel a little like I’m outside of my body. I don’t think the lightheartedness helps.

Also, summer was supposed to be done. The humidity can stop now.

Tonight I am grateful for my husband. We’ve been married nearly 10 year and like any marriage that long we can get on each others nerves a bit, but he’s always in my corner.

A positive thing about myself today: I was chatting to a friend I used to work with on WhatsApp today. She had caught up with another ex-colleague, and I realised, while she was giving me the news, how much we have both moved on from that place. There’s still some stuff I’m working through, and I’m still angry about a lot of things, but I feel like I’ve genuinely moved on from a lot of it, and that made me feel good.

Here’s a bag to bury you in

This week has felt long, but not in an ‘omg kill me now’ sort of way. It just feels like it has been a long time since Monday, and that I have fit a lot into this week.

Which I guess is a good thing.

I was determined to fit an extra workout in this week, because I promised I’d do three weights sessions, and I wanted to try and get a spin class in on Sunday. I woke up feeling less than stellar this morning, but as planned I put my gym gear on at lunch time and just put one foot in front of the other until I was there, before I could think about it too much.

We’ve started a new program, which as I said on Wednesday I’ve been enthusiastic about. The workout I had scheduled today has two exercises in it I don’t love, but I actually felt okay about it and ready to just run at it head on.

I got there and started the warm-up. It was at this point that the program felt like a pretty big step up from the last one. I was two thirds into the warm-up when the hopelessness and resignation hit, and I actually felt like I wanted to cry. I was really struggling with the exercises – the one-legged glute bridges in particular. That circular hopelessness started up in my head – Karen, you’re only two thirds through the warm-up and you already can’t get this done.

It was mentally very hard work from that point. I did get through the workout, but I am pretty certain the planks I was doing on the fit ball weren’t the most amazing planks in the world. My split squats felt terrible and I am pretty sure, if I mentally gave myself more of a chance today, I could have done better than the heaviest weight with the assisted pull up.

But I got through it. Even the bloody finisher at the end. I can’t say I felt euphoric at the end – I felt relief more than anything.

I don’t know that the workout on Monday is going to feel any better than this. I hope it does. But I do know that if I do these exercises over and over enough times they will get better. And I will be able to at least get through the warmup without feeling like I want to curl up in a ball and cry.

Tonight I am grateful for my guitar teacher, who has been super understanding about me dicking him around all week while I try to sort my schedule out.

A positive thing about myself today: I didn’t give up on that workout today. And I will show up to boot camp tomorrow. It’s a cliche, I know, but tomorrow really is a new day.

I need tempo

In around 2013 I started following a lot of fitness people on Instagram. Women, mainly, and mainly women who lift.

At the time I was pretty fit myself and looking for inspiration I guess. These accounts were pretty glossy to look at, and more often than not the women were also from magazine covers etc. for fitness magazines I’d picked up to read.

I’ve notice though, particularly over the last 12 months or so, I’ve unfollowed a lot of those people. There seems to me to be a lack of authenticity in some of those ‘fitspo’ accounts that can get a bit grating after a while. And all the power to them – I’m not shitting all over their self-chosen branding, because my initial follow shows that there truly is a market out there for that stuff. It’s just not what I currently want to see on my feed each day.

I’m following even more women now than what I was, but they’re different women. There is one woman in particular called Erin Brown (@IamErinBrown) who I draw so much strength and inspiration from. She writes a lot about body positivity and body trauma, and being authentic to yourself. She’s bluntly honest about the not-so-good days and about the tough parts of being a woman. She lifts and she swears and she writes and I basically want to be her when I grow up.

I’ve also started following a lot of body positivity accounts. Fat women (who embrace the word fat to describe themselves) who have found happiness and confidence and a fulfilled life in the body they’re in.

I’m conflicted about these accounts, even though I really wish I wasn’t. It goes back to that idea I touched on a week or so ago about confidence – does confidence come via finding a way to be happy with what you have, or does it come from making positive changes to yourself to meet the goals you have?

I’m sure it’s both, but how to reconcile those two things?

Like, I love that these women have so much pure love for their body. They’ve worked really hard to get there, and they truly get some god-awful shit on social media for it. I also love how amazing they look in the photos they post – these women put real effort into their appearance, and buy beautiful clothes and shoes, because they know they’re worth it. For a fat woman with terrible self-confidence to be able to see this is a truly wonderful thing.

But can someone fully embrace themselves this way and still want to make changes to their body? Like, can I work on loving myself the way I am now, without letting go of the fact that I want my body to be different?

Lordy – it’s something I’m really grappling with right now. In part because I really do love the fact that larger women are finding a place in TV, music and social media. But also because I’m not sure if embracing that myself means that I’m throwing my hands in the air and going ‘well this is just the way I am now, might as well learn to love it.’

Tonight I’m grateful for one particular Instagram account run by a woman in Melbourne who fosters kittens. She posts videos of her bottle-feeding baby cats and for some reason I find them very relaxing to watch. I have this thing of waking up in the middle of the night and not getting back to sleep because my anxiety kicks in – I will often look at these videos to calm my head down a bit so I can fall asleep again.

A positive thing about myself today: I really do care a lot about my clients. I have a fairly elderly client in WA at the moment and I call her a lot. I know it helps her to be less anxious about her visa situation, and she also feels like I’m genuinely on her team. My loyalty to my clients has sometimes worked against me in the past (and is always, without fail, the reason I stay too long in jobs) but I would rather be that way than the other.

Can you see that young star up ahead?

The energy around me has felt weird today, and a little agitated. So much so that I just typed ‘when is the next full moon’ into google.

April 19, if you’re wondering.

Maybe Mercury is in retrograde or something. Whatever it is, everyone feels a bit cranky and fed up and I’m just trying to keep my head down.

I actually got a lot done today though. I pushed through some stuff I’d been putting off at work and sent an invoice. I forgot to put a load of washing on, but you can’t win ’em all, right?

Today I’m grateful for hot showers, and finally getting to the time of year when I hot shower feels like the best thing ever. I had to do a fairly urgent email when I got home from the gym this morning, so I sat in my stinky gym gear for about an hour. The shower after that felt 100% amazing. I’ve been actively trying to be conscious of the things that make me feel good, and the things I look forward to each day, that aren’t food. This is one of them.

A positive thing about myself today: this morning in my PT session, my energy levels did not feel great (plus it’s that time of the month so I felt a bit wobbly generally). But a few times when I felt like I had nothing left I managed to eke out a couple more reps and I felt good about that. We also started a new program, and I feel really positive about it (even though there are some exercises in there I’m scared of haha).

Let us toast to the lists that we hold in our fists

I left it too late to post, and now I’m in bed, with the laptop on my, well, lap (haha), and the boy is agitating for me to turn the light out.

It’s 10pm and it’s already past our bedtime.

Tuesdays are the only days now I don’t work from home. Having the freedom I do on the other four days really makes me realise how much time we spend getting to and from commitments. Even when I worked in the city, I would spend anywhere from an hour to an hour and a half commuting. And that’s a short commute for a lot of people.

While I feel like I’m getting better at balancing my work and my client commitments, I still don’t feel like I have a proper weekly routine since I went back to work full time. That’s in large part because I haven’t really felt up to it mentally. I think, though, that’s probably the next thing to work on – getting a regular, weekly routine where the really important things are locked in, and I’m more accountable for my own time.

And it doesn’t mean I can’t keep some flexibility if I do it the right way.

Tonight I’m grateful for the positive feedback I’m getting from the people I’m working with right now. I’d forgotten what it’s like to be told you’re doing a good job, and what it can do for your confidence and productivity. I don’t take any of the positivity for granted.

A positive thing about myself today: I made myself a list of intentions at the start of the week, and I have been revisiting it each morning. So, every day I have a ‘today’ list, and a ‘this week’ list. So far every day I have worked through everything on the ‘today’ list each day. It’s amazing how much crossing even one small task of a list lightens your mental load.

Your body may be gone, I’m gonna carry you in

We’re all very tired today. Even the dogs have spent the majority of the day snoring their heads off. Getting out of your own day to day context and putting yourself in a different physical location can be very freeing, but going away on the weekend can also be bloody exhausting.

I’ve been working today on a post about the changes I’ve made to my Instagram feed recently, and what they might say about where my head is right now, but I need to think on it a bit. So it will probably be posted tomorrow.

We were talking tonight on the call about negative thoughts and negative self-talk. I understand academically the concept that negative thoughts beget negative experience, and positive thoughts beget positive experience. I don’t believe in God, and I’m not a spiritual person, but I do believe in good and bad energy and a vague concept of karma.

But what if chasing that positivity takes energy you don’t feel like you currently have?

When I was first diagnosed I had no trouble at all throwing positivity at all of it. At my terrified thoughts about my own mortality in the middle of the night. At the people who loved me who were worried and terrified on my behalf. At my job, when there was anxiety all around me about how I would cope and a relentless workload. At every single health challenge thrown at me when the news kept getting worse and my body kept working against me.

After a few years of that, though, it became incrementally harder to draw on that positivity. Things started overwhelming me, one by one, to the point where I felt like I had no control over anything (and that lack of trust in my body crept in).

What comes after that, I can tell you, is a kind of numbness. You can’t fall apart so you fall into certain platitudes and hope the veneer you’re showing the world is convincing enough to get you through.

But it can’t work forever. And eventually you do fall apart.

And what then? What I’m doing now, I guess. Trying to find and force the positive. Pushing through the numbness. Working on forming habits. Hoping that repetition and the sheer act of showing up will save me in the end.

This all sounds a bit grim, but it isn’t. It’s just the current state of affairs, and I’m playing the long game.

Tonight I am grateful for the friendly man at the Apple store today who answered every one of my very uneducated questions and gave me actual solutions to my problem.

A positive thing about myself today: I woke up feeling like I had no physical will at all, but I got myself to the gym and found the mental will to push myself. I made it through the workout and even got a couple of new PBs, just by allowing myself thoughts starting with ‘I wonder if I can try…’.

In your head, in your mouth, in your soul

Tired.

Like, to-the-bones exhausted.

We got back at around 4 this afternoon, and after unpacking the car I lay down on the couch and didn’t move again for two hours.

The weather, though, finally feels like autumn. The air tonight smells like earth and damp and dark. I had to put a hoodie on when the sun went down. All of this makes me very happy.

It’s hard to say how the weekend went. It was really nice to see them all, and that part of the world is truly beautiful. It’s striking to me though how little changes, even given a lot of years and a lot of distance. The dynamics of a room. The energy of a person.

I have an awful lot of work to do tomorrow, and an alarm to set so I can get to the gym in the morning. Sleep first. In my own bed, which is always the best sleep.

Today I’m grateful that I live so close to an area as beautiful as the South Coast of NSW. The water down there is a shade of green and blue you don’t see anywhere else. There are a lot of dog friendly beaches and even with the tourists it doesn’t feel overrun.

A positive thing about myself today: I was organised with food this trip. I figured the way you can control the food you’re eating on a weekend away is to take a lot of it yourself. So I took a lot of salad stuff and fruit and almond milk and chicken and other stuff I would feel good eating.