Waiting for the Other Shoe to Drop… When Things Are Actually Going Well?!

 

There is a very particular sort of anxiety that comes with chronic illness.

It isn't always “Oh God, something is wrong RIGHT NOW.... what if something bad happens to offset things? Do I deserve good things?"

Sometimes it is much more subtle than that.

It is the little voice in the back of your head going:

“Okay… so when is the next thing going to happen?”

Because when you've spent enough time having your health throw completely unexpected curveballs at you, you become rather good at anticipating them.

You learn to look for the other shoe.

The other ball.

The next appointment.

The next blood test.

The next infection.

The next weird symptom.

The next bit of paperwork that somehow requires seventeen pieces of evidence, three phone calls and the patience of a saint. Explaining Common Variable Immunodeficiency is brutal. I still can not get my head around how it wasn't something I did to myself somehow. 

And then, occasionally, life goes…

Fine.

And honestly?

I don't know what to do with that.

---

I have not been handling summer particularly well…

This summer has been WEIRD.

Not necessarily bad. Actually, quite the opposite.

A lot of things have been going really rather well.

Which sounds wonderful, doesn't it?

Except I have discovered that I am apparently not particularly good at having nothing immediately catastrophic to deal with.

I have been filling my free time with extra work because, frankly, I think I need the structure. Without something to focus on, my brain has apparently decided that now is the perfect time to open seventeen tabs about the past and start investigating all of them simultaneously.

So I've been flapping.

I've been stressing.

I've been introspecting.

I've been going through old things because life admin has meant that, unfortunately, I HAVE HAD TO.

And there is something about looking through old records, old academic stuff, old experiences and all the things that didn't go well that makes you suddenly remember just how much you have actually had to navigate.

It is very easy to forget how far you've come when you're busy dealing with the next thing.

Then you stop.

Look backwards.

And think:

Jesus.

I actually went through all of that.

---

My organisational system looks absolutely terrifying

I journal.

A LOT.

Not because I am naturally organised.

I should probably clarify that before anyone gets the wrong impression.

My organisational system exists because otherwise my brain would probably simply set itself on fire.

From the outside, it looks VERY Type A.

Colour-coded tabs.

Reference notes.

Points.

Flowcharts.

Cross-references.

A ridiculously long-form journal that is essentially a Dear Diary account of my entire existence.

Then there is my gratitude journal.

On my tablet.

In the gratitude app.

With photographs.

Affirmations.

Little memories.

And yes, I still have my streak going because apparently I am now the sort of person who can become emotionally invested in an app congratulating me for being grateful.

Then there is the academic diary.

I give myself deadlines to email tutors.

I make notes about what I actually need to ask.

I work through drafts before sending them because sometimes I need to stare at my own writing for a while and work out what on earth I am actually trying to say.

Then there is the bullet journal.

Task tracker.

Affirmation of the day.

Hourly schedule.

Mood tracker.

It looks incredibly organised.

It looks like I have my life together.

I do not.

This is scaffolding.

There is a difference.

When you have unpredictable energy, concentration and health, you sometimes need to build yourself a little external brain. I need a place to dump stuff... it is like having a really heavy backpack all the time, and finally setting it down in the hall! 

Mine just happens to be colour coded.

I also use sticky tabs in all of my books, reading materials, for essay points, seminar talking points, and general chit chat, to refer back to... an index system for my notes so i can see the colour coding at a glance... technically a tip from a Chinese Med Student I follow on Youtube for her toxic AF study tips... Why? because it is a cross-disciplinary method, makes revision easier, and she is FUCKING FORMIDABLE.... 

---

And sometimes none of it works

There are still days where I cannot get out of bed.

There are days when going for a walk is completely out of the question.

There are days where the carefully constructed schedule gets abandoned because my body has apparently submitted a formal complaint.

And I am learning to be okay with that.

Not thrilled about it.

Not delighted.

But okay.

Because I think I am finally starting to understand that pacing isn't failure.

Rest isn't failure.

Changing the plan isn't failure.

Sometimes the most productive thing I can do is recognise that today is not the day.

And there is something strangely comforting about knowing that I don't have to earn the right to rest by completely destroying myself first. DBT has taught me though, that if I am panicking internally, it is bloody impossible for me to have breakdown while I am doing a wall-sit, because the pain is like a sort of override mechanism... I am gonna be hench by the end of summer.... SHREDDED... 

---

I even had a few tarot readings…

Because apparently I wasn't already complicated enough.

I've been reading tarot for more than ten years. I started doing it seriously during the pandemic, because it was something I could do to get money from home. I used to treat it like a party trick in the pub.. 

And I still don't actually know how it works. I think it's mostly reading human behaviour... which is hilarious, as I miss a lot of social ques in the wild.. especially when I am being flirted with! I do not know how I can read tarot, or like how it works... 

I genuinely don't think I ever will.

I have theories.

I have experiences.

I have had cards come up in ways that have made me sit there and go:

"…well that's bloody weird."

But do I understand the mechanism?

Absolutely not.

And some of the recent readings were particularly entertaining because I spent a significant amount of time telling people that they should probably speak to a therapist or a medical professional.

Which is perhaps not the traditional role of the person receiving the tarot reading.

But there we are.

Fun times.

For me, tarot has never really been about having some mysterious cardboard oracle tell me what is going to happen.

Sometimes it is simply a way of looking at something from another angle.

A prompt.

A mirror.

A way of getting thoughts out of my head and onto the table.

And sometimes you look at a card and realise you already knew the answer.

Annoying, really.

---

I BOUGHT A CAR!

This still feels slightly surreal.

I bought my first car.

I paid for it myself.

Is it an expensive, immaculate, shiny new car?

No.

It is an old Fiat 500c.

It needs work.

There are repairs.

There are things that need doing.

There have been moments where I have looked at it and thought:

“What have I actually bought?”

But you know what?

I don't think it's that bad.

And more importantly...

It's mine.

There is something about that which feels much bigger than buying a car.

When you've spent a long time being held back by illness, circumstances, money, health, other people's expectations and all the other assorted nonsense life throws at you, you become very aware of the things you couldn't do.

So perhaps my standards have changed.

Maybe the bar is in hell.

But perhaps the bar is in hell for a reason.

Because when you've been held back for long enough, sometimes the first step doesn't need to be glamorous.

It just needs to be forward.

And I think that is what this summer has really been about.

Forward.

Not perfect.

Not linear.

Not magically cured.

Just forward. It doesn't mean that car doesn't scare the hell out of me tho... it very much does.. 

---

Maybe I'm learning to stop waiting for disaster

I still have that instinct.

I still catch myself waiting for something to go wrong.

Because chronic illness teaches you to be vigilant.

You learn your body.

You learn your symptoms.

You learn what is normal for you.

You learn what isn't.

You learn to prepare.

And when you have spent years having to prepare for the possibility that something might go wrong, it can be surprisingly difficult to sit in a period where things are actually going right.

I think that is where I am now.

Learning to tolerate the good.

Learning not to immediately ask:

“But what happens next?”

Maybe nothing happens next.

Maybe I get to enjoy this bit.

Maybe I don't have to borrow tomorrow's problems.

Maybe I can trust myself enough to deal with whatever comes when it actually arrives.

And perhaps that is the real lesson.

I don't need to know that nothing bad will ever happen again.

Because realistically, life is life.

Things happen.

Bodies do weird things.

Cars break.

University sends emails.

Tarot cards confuse me.

Human beings remain inexplicable.

But I know a little more now.

I know how to look after myself.

I know when I need to stop.

I know that asking for help isn't failure.

I know that my life can be bigger than my diagnosis.

And I know that I am capable of building something, even if I have to build it slowly.

So for now...

I'm going to stop waiting for the other shoe.

I'm going to wear the shoes I actually have.

And I'm going to see where they take me.

Because, for once, things are going rather well.

And perhaps I'm allowed to enjoy that.

And perhaps  most of this comes from genuinely dealing with a lot of stuff to have brought me up to this point... a stress reaction of sorts... Perhaps it is not a moral failing, a chronic illness of itself, or a disorder... Just a nervous system that is keyed-up! I really trust my GP and I am glad he referred me to counselling for that, instead of telling me to try harder, take more meds, and lower my expectations... 

I do not think wanting a 30k salary, floor to ceiling bookshelves, a beat up car outright, a BA degree, a place to live, and someone to love is particularly arrogant... I mean really... ?! 

---

A few things I'm reminding myself lately...

I don't have to live tomorrow's problems today.

Rest is not failure. It is part of the plan.

I am allowed to enjoy good things without waiting for them to disappear.

Progress doesn't have to look impressive to be progress.

And perhaps my favourite one:

I can trust myself to deal with whatever comes next, when it actually comes.

🌸 One day at a time. One page at a time.

With My Heart, 

- Clare Alexandra 💝