Take a seat

Hello! Happy New Year! And while I’m at it, Happy Valentine’s Day, too! Because it’s February now. The middle of February.

But I’m actually here to tell you about something that happened last year. But I’m going to start with something that happened even before that.

So. I came home on parenteral nutrition (TPN…IV nutrition…it’s all the same thing) in November of 2014.

Two things about TPN: one, it requires a significant amount of medical supplies and two, it requires a significant amount of daily set-up. When I first came home I had no real concept of what this would all entail and how I would make it work, and so my storage and set-up location have evolved since then.

But one thing that never changed is that I always stood up while doing my TPN set-up.

Now, you might be thinking that this doesn’t sound like a very good situation, because if you know me at all you probably know that I’m not very good at standing up. While years and years of ballet (and now lots of hard work in physiotherapy) has given me excellent balance, years of neuro-autoimmune activity has made it so the rest of my body just can’t deal. Being upright on my feet for too long, particularly standing still in one spot, makes me feel all kinds of terrible. Add in the lifting of heavy TPN bags, bending over to dispose of sharps and crouching down and standing back up to situate everything in my backpack…my body hated the TPN set-up process.

As a result, I hated it, too. I dreaded it every single day. From the moment I disconnected from my infusion in the morning, I would start counting down with dread the hours until I had to set it back up again. I never had a consistent schedule because I would need to wait until I felt well enough to stand up long enough to get it set up. Sometimes this wouldn’t happen until after midnight which meant that the following day my infusion wouldn’t finish until well into the afternoon, which just shortened the hours until I was supposed to do it again.

Hating the set-up process made me hate just the whole TPN deal.

And yet, it never really occurred to me to do it differently.

Until last summer. I was at someone else’s house and I went to set up my TPN and instead of the standing-height dresser full of medical supplies that I usually used, there was a desk with a chair. And so I sat down and I set up my TPN.

And it was magical.

I didn’t feel terrible and tired after. I didn’t feel like I had to rush my way through it. It was such a simple thing but it was a total game changer. So I went home and I ordered a small desk-like table thing and I got a chair and now I sit down to set up all of my infusions and guess what?

I don’t hate them anymore.

I don’t spend my entire day dreading the set-up. I am able to take my time. It’s less stressful. I think more clearly when I’m sitting down. I’m almost always able to start my infusions when I actually intend to, which means they finish earlier in the morning and take over less of my day…yes it’s still the same number of hours but freedom in the day is more important to me than freedom in the evening.

It seems like such a small change but it’s made such a big difference. I had no idea how much of my burnout had to do with how my set-up process just wasn’t working for me. My overall feelings towards my infusions have improved. A lot.

All because after almost five years of being on my feet, I took a seat.

For most people it works the opposite way. We often hear things like “stand up and take a look around” or “thinking on your feet” but I do my best looking around on my butt, thank you very much, because when I’m standing up the only looking around I’m doing is for a place to sit down. And I am in fact physiologically incapable of thinking well on my feet.

Life is so much more accessible to me when I’m sitting down.

And so my word of the year this year is not a word but a phrase and that phrase is “take a seat.”

Take a seat, literally. Because any time I think it will be easier to just stand up and do something…I’m probably wrong. It will probably be easier and more enjoyable to sit down. Just because I can stand for something, doesn’t mean I need to. Stand up if I want to, but not because I feel like I’m supposed to. Save the standing for when it’s important to me.

And take a seat, figuratively. Because how many other things am I doing a certain way because it’s never occurred to me to do them differently, even though a different way might be a better way? Also take a seat for important people in my life, because if I’m going to be there for them, they deserve a non-rushed, clear-thinking version of me.

And perhaps the most intimidating part of this all, asking for a seat. Because you can’t take a seat if there’s no seat available. I can’t expect anyone to know what I need if I’m too afraid to ask for what I need, if I’m too worried about being a bother.

So I’ll just be sitting here for the rest of the year.

And I’ll save you a seat in case you want to sit down, too.




8 thoughts on “Take a seat

  1. Amen, sister! I’m so glad you found a way to do things working out what works for you in managing your illness. It’s so hard sometimes to look at things we’re doing and release we need to work with what our body is telling us instead of pushing through it. Sometimes I can shop or clean but like you were saying I have to take a seat! Otherwise I am flooded with pain so bad I start shaking and sweating and then it’s all over. Same thing if I just stand or walk too long so I truly understand. It’s hard too when it didn’t always used to be that way.

    • For sure. And remembering that if conserving energy during one activity means being able to do a second, then there’s no shame in that! Even if we *could* do it another way.

  2. I’d love to take a seat with you and chat about our craft and what we like and don’t like.
    Isn’t it amazing how we can do something for so long and it’s only when we are ‘forced’ to change how we do it that we realise that there is an easier / better / smarter way to do it – life can be funny like that sometimes.
    Have the best day xox

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