In Your Time

Tonight I’ve been taking it slow, listening to Bob Seger and letting a stressful day fall away.

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On Sunday, I overdid it a bit.

There was blogging, a birthday breakfast, a bike ride, presents, pilates, a few thousand loads of washing (actually only around five, the rest still wait), dinner, a long walk, a bath and bed.  It was the perfect day, the perfect spring weather. It was everything gorgeous. That list of activities in one day was unheard of, for me, before. And because I was in high spirits and feeling invincible, seizing the day and smelling the roses… you know, that kind of amazing day… I overdid it in a rather large way.   It was also daylight savings in our part of the world, where the clocks go forward one hour.  And that means I did all of that in even less time!

On Monday I woke to a familiar feeling. Overnight my muscles had become encased in concrete, my brain invaded with a fog I couldn’t shake. The nausea I was so quick to forget rolled back in over my horizon. I opened my eyes to a day that filled me with fear. Is it back? Are the good times over?

It’s hard not to worry about that. The niggles in the back of my mind as I laboriously mount the stairs.  Stairs I ran up only last week.  It must be the pilates, I think. Yes, that’s it. That’s all. It’s normal.  Yesterday I told the hubster I was feeling a bit below par. It’s the lag from daylight savings, he reassured me. Everyone at work is feeling below par too. That’s what it is.

Tonight he came home and found me looking out my bedroom window from my old perch on the bed. I haven’t been here during the daylight hours for a while. Not feeling this way. The kitchen was a fright, an entire jar of powdered ginger fell and I couldn’t face bending to clean up the mess.  I left it on the floor and came to lie down. My tears surged upwards when he looked at me with those lovely eyes full of concern. Do you think it’s back? he said, his voice quiet.

I hope not.  I’m just taking my time.  A bit slow today,  I said.
And probably, that’s all it is. Just a bit tired. A bit of seasonal lag.

I’d like to be able to feel tired and not worry. I’m trying to focus on taking it easy and breathing through the fears.

This song was on the playlist tonight and it made me feel a bit better. Are any of you out there doing things in your own time tonight?  I wish you a restful night of refreshing sleep.  As Bob Seger says:

And after all
The dead ends and
the lessons learned
After all
The stars have turned to stone
There’ll be peace
Across the great unbroken void
All benign
In your time
…you’ll be fine
In your time.

Belinda Taylor: Would you Rather…?

This ‘Meet My Peeps’ post comes from one of my favourite writers, Belinda Taylor.  A former ICU Nurse, and general Science boffin, mother of Milly the Cat and Monty the budgie, and wife of Chris; Belinda has completed a Diploma of Accounting in the time since her diagnoses.  She has post viral POTS complicated by Myalgic Encephalitis. I don’t think she’s been formerly diagnosed with a wicked sense of humour, but she’s got one.   You may recognise her style from the excellent spoof report she wrote for this blog recently, ‘Breaking News’ all about a cure for chronic illnesses.   And if you are working on one of those 8 Great Ways to Live Well, and need something funny in your day, look no further than Bel’s two pieces.  She makes me smile this girl!

Photo of Belinda Taylor and the quote: "Having a chronic illness of any sort is like a life changing game of 'Would you Rather?'"

Some friends and I used to play a game called “Would You Rather?” at work. Being nurses, it was always pretty easy to find something appalling and stomach-churning to test where your limits of tolerance were. Poo in the eye was always a favourite.
“Would you rather… poo in the eye? Or, to eat a teaspoon of sputum?” See? We were pretty gross.

Having a chronic illness of any sort is like a life changing game of Would You Rather? Would you rather, have your mind deteriorate and a healthy body? Or, have a functioning mind and have your body crap out on you? I’m not sure the first option would be a whole lot of fun, unless your deteriorating mind made you hallucinate all day that you were being fed chocolate macarons by Jamie Fraser from Outlander, while lying in a bubble bath.

Having POTS and ME, I can 100% say that the second option isn’t a bundle of laughs either. I would much prefer poo in the eye. Having your mind say “Yes!” while your body says “Hell, NO!” is a lesson in frustration that is played out in the interaction of your body and mind every day. If my mind and body were once friends, they would have broken up by now and only spoken on birthdays and the occasional ‘like’ on Facebook.

A typical day might go something like this:

Scene: Our heroine is lying in bed in the morning, having just woken up.

MIND: Ugh, I really need to go to the loo!*

BODY: Ha! You know I’m going to make you face plant if you try and get up before you’re well hydrated and have taken your meds

MIND: -but if I drink more, I’ll need to go to the toilet even more!

BODY: Well, ok, if you want to risk it…..

MIND: Fine, you win. I’ll drink this bottle but I’m not waiting for the meds to kick in.

BODY: OK, I can live with that.

erm, what would I know_!(2)

Our heroine commences a wobbly walk down the hall to the bathroom for sweet, sweet, bladder relief.

MIND: I suppose now we’re up, you want to be fed?

BODY: Well, I’m not too fussed. I’d be willing to let you do something else first. Feed the cat maybe, put some washing on.

MIND: Wow, ok, thanks. I’ll get onto that then.

1 minute and 43 seconds later…..

BODY: FEED ME NOW!!!!  Stop what you’re doing immediately and feed me! I’m nauseous, I’m dizzy, I must be fed right now or I really think I might die!

MIND: But you just said-

BODY: –I know, but now I really have decided that feeding me would be the best thing.
I’m getting hanGRY**!

MIND: Well, ok, if you’re going to be like that about it, here, have some breakfast.

BODY: Ahhh, thank you. I love you.
Thank you for feeding me and looking after me with this delicious food. You really are the best.

MIND: You’re welcome-

BODY: -Gah!! What is this?? Now I have food in my belly, I have to do work to digest it?? Seriously? Well you know what this means, don’t you? I’m going to have to steal all the blood and give it to the stomach. Sorry brain, you miss out this time. And heart? Yeah, you’re going to have to work really hard to get the pitiful amount of blood I’ve left you up to the brain. Sorry about that, but I really have my work cut out for me here with all this digesting.

1 hour later

MIND: Do you think it would be ok if we moved now? Maybe we could try a bit of exercise?

BODY: Oooh, exercise, yes that sounds like fun. What shall we do?

MIND: Maybe we could just walk down to the corner and back again.

BODY: Yeah! Let’s go. This sounds amazing. Woo Hoo! Exercise here I come.

Our heroine makes it to the first corner down the street.

BODY: I’m feeling awesome. Can we go further? I’m loving this! I feel so freeeeeee. Let’s go to the next corner. The next corner really would make my life complete, you know.

MIND: Are you sure? You always say you’re quite tired after exercise. I don’t want you to overdo things. I’m trying to look after you. But the next corner would be pretty amazing…

BODY: Yes! Let’s do it. This is… easy.

Our heroine walks to the next corner.

BODY: Um, yeah, sorry about this, but I don’t feel so good. I think the next corner might have been a bad idea.

MIND: But, you said you felt great, you were keen to go.

BODY: What would I know?!

MIND: Well, quite.

Our heroine inches her way back home, to spend the next few hours (days/weeks) cursing her stupid body for being a bit of a tool***.

What would you rather, poo in the eye? Or chronic illness?

 

NB:  Translations below for non-Australians/New Zealanders…
* loo = toilet
** hangry = hungry +angry
*** being a bit of a tool = being a bit of a dick