Perpetually Confused @lilmissworld - Tumblr Blog

Four weeks of counting left.

Then I’ll be halfway. Halfway to a greater age. Closer to the end that the beginning.

I’ve been counting down to this birthday for months. I loaded it on my phone and on the stickied calendar on the wall.

It’s been there. Forefront. Tick tick tick. You’ve got a big birthday coming. Time to move forward. Let’s go.

I can easily count how many things I haven’t done. I know where the lacks outweigh the joys.

And I laid multiple promises at the door of this birthday. Embedded them deeply, so I wouldn’t forget or dare to ignore.

Those plans are mere wisps of feeble thought now. I haven’t delivered on most of them.

But the day keeps coming, regardless of if I hold my breath or not.

Breathe in. Breathe out. Tick tick tick.

Today was the 28th day. The 4 weeks left marker. And I was frozen. Stuck on the sofa from a deep laden CRPS flare.

So I tried to move whatever I could, with purpose. Loaded family tree data for others. Scoured booking sites for next month’s accommodation. Sent off the emails I avoided last week.

Just breathed in. And breathed out.

Tomorrow will be one day less on the countdown. I’ll be closer, regardless of it I feel I am or not.

I’ll likely add another hope to the long list.

And I’ll still mark another day down.

3 years ago today, I broke my arm.

3 years ago today, it broke my life.

What seemed like a harmless slip down a hill has become a point often at the edge of a cliff.

Lots of medical jargon, little talk, no talk or talking down to me.

Suggestions. Well wishes. Condescension. Annoyance. Grief.

I have lost my temper. Lost my shit. Lost my patience. Been completely over it.

And I can’t say the journey is over. Because this breakage, will never fully heal.

From a badly damaged arm, has grown a badly damaged life.

I keep being told how incurable it is. Untreatable. Something that should just be managed. Something that will never go away.

Pain they told me. At levels that seem unfair. Often when you least expect it. Forcing you to stop. Try to silence the world.

Something you can’t soothe over with a tablet. No medicine can touch it. It will change with the seasons. It will change with every emotion you feel.

There will never be a way around it. You might win for one day, then lose 12 more to a flare.

Non acceptance only feeds its fuel. Pity stokes its fires even more.

Rest too much, and you’ll over do it. Don’t stop often enough, and it will slam you to the floor.

There’s no point of braveness that will be enough. There’s no shining knight, no armour, no prize or medal at the end.

Instead there’s lessons. Constant learning. Over and over, so you don’t dare forget.

And moments of fear, that it might become worse. Could change at any time. That maybe I’m an imposter. That maybe it’s too much.

I can’t always see beyond this point. I can’t see how it can change.

I also can’t see how much damage it has done. Often closing my eyes, wishing it would go away.

I’m stuck. Like my arm in that moment of time. Not sure who to turn to. How to bandage it. How to make it new.

And I want so desperately for some form of control again. More hope. More want. More grace. More calm.

3 years ago, I was on the eve of something different.

I saw the layout of the land. My plans. My hopes. My goals.

Today I feel not all that much wiser. Still unsure how I’ll be able to move beyond this point to anywhere else. Or how soon.

#crps/rsd #crps warrior #crpssucks #crps #stuck #uh oh

You know those times when your head feels like fluff and you don’t really know what is going on but you’re just going with it?

That’s how I’ve been feeling lately.

I’m behind on so many parts of my life that I’m pretty sure I’m floating on an ambivalent cloud that is just uttering a whole lot of meh.

Study. Behind. By about 6 weeks. Meh.

Cleaning. Behind. By about a year. Meh.

Travel plans. Behind. And a lot of $$ short. Meh.

Emails. Behind. I’ve seen them but not replied at all. Meh.

Insurance claims. Behind. Could probably recoup some money to make up for what I’m currently spending. Meh.

Relationship. Very behind. Currently only participating enough to be kind, not enough to be or to share love. Meh.

Exercise. Behind. I bought a treadmill. I’ve used it once. Meh.

Friends. Behind. Health has been kicking my butt and doubt has been filling my head. Meh.

Me. Behind. Haven’t looked or felt like myself in quite a while. Not even sure if there’s a lot of me left inside anymore. Meh.

The list just continues. A whole lot of meh.

I don’t know where I lost my joy. I’m not even sure how long ago it was.

I don’t know what it feels like this more often than not. I’m not sad. I’m not happy. I’m just like the cream in the middle of the Oreo. Bland. Sometimes sweet. Never quite all on one side.

I don’t know where the reset button is. The accelerator or the go.

Just cruising. Trying not to rock any boats or cross any lines. Blending into the background and laying as low as I can.

So much so that I spoke to someone today and almost didn’t recognize the sound of my own voice. Almost squeaky and very pleasant.

Who knew? For I haven’t heard it in so long.

Maybe I need to go backwards to bring things forward again?

Or maybe I just need to rest and breathe some more.

Not sure. It’s just fluff. Fluffy bits and large clouds.

Hmm. So be it. For now. Before I remember how to make it so again.

#fluff

Tuesday’s child. Full of grace.

I was born on a Tuesday.

I’m a 2.

Or an 11, 2.

My number is 2.

I’m a 2 for sure.

Yet I mostly feel like a 1.

Together with someone, yet alone.

Figuring this whole big world out.

Fighting the demons.

Slaying the insecurities.

Wondering always, is this my destiny.

Am I meant to be alone.

Even when I’m with someone else.

Am I meant to lead?

Am I meant to follow?

Do I step first?

Do I run without caution?

I’ve always acted as if I have to do it.

Oldest child. Set the tone.

But what happens if I don’t?

How does it then work?

And why does 2 need to become 1.

Especially when 1 isn’t always enough, for 1.

Let alone 2.

Frustration.

Why do we hand our lives and our selves and our willingness and our hopes over to “medical professionals” if they just end up leaving us feeling like crap?

And not crap, in the physical sense. But emotionally. And mentally. Which in turn, I guess, becomes physical down the line.

I sat online for over 30 minutes today waiting for a zoom chat with my medical team. They had sent me at least 10 text messages and 3 emails confirming the appointment and then they didn’t bother to turn up.

No notice, no warning, no update, no reply to my messages of ‘where are you’. Nothing.

And yet, I’m supposed to hand myself over to them for advice and guidance and direction and hope and solutions and plans and all else.

Yet they can’t even honour an appointment. The only time I get presented with.

I think the frustration has been growing. It’s not a “one-off” event. More a culmination of small things that I’ve sought hard to suppress.

And all I can wonder is, how many other times and places I’ve allowed myself to feel this way. To think that it’s ok or to make excuses or exceptions because they’re just doing what they can.

And I still let it continue. I still let it be ok. Because I don’t want to make noise or cause problems or be bigger than I am.

The missed appointment likely won’t bother anyone else. They might not even notice that I had a small time of their day pencilled in. They probably won’t notice if I don’t return or try to rebook.

But my body is keeping count. It is adding up. I am remembering and marking the tally.

And soon, I’ll speak up.

#frustrated voiceless

Life.

I just cultivated my IG for the third time in 4 years.

Like conscientiously posted something. Without thinking.

Something I’ve struggled to maintain.

It’s always hard for me to know where I can just be me.

Fearful almost, that someone might see my words. My heart. My moments. My truth.

So I stand back and let others shine.

Don’t claim my spot. Or my place. Or invest heavily into running around wanting to scream “I’m here” but refuse to use my voice.

The middle part is always the hardest.

When you’re not sure if it’s left or right. A step forward or if you were pushed. Feet dragging, arms flapping but not quite flying.

When you turn and wonder if it’s a new place. Or you’ve never quite seen it like this before.

I stopped and almost cried in the mall yesterday.

I felt the hot lava of tears pooling and the catch in my throat.

Stared around and wondered just what the hell I was doing.

Stared around some more, and made my way home.

This place. This space. This sense of being.

Something’s off and I don’t know where. Or why.

I just know.

But have no idea yet how to figure it out.

Monday.

At least in my corner of the world.

Somewhere else it’s still Sunday. Perhaps evening. I’m not really sure.

But here, it’s Monday already.

Wet outside. Cold too. Like the universe decided the best way to wake up your life was to douse it with a whole heap of ice water.

Effective, yet cruel.

My head feels like fluff. Floof. Candy floss.

It’s the lack of sleep. Or the moment if once well asleep, and now awake too soon.

I think there’s a few more hours of rest in my brain. It’s just not happening in my body.

Ramble. Lots of words and all the fluff makes it ramble.

Sets the tone for the day. This Monday.

Where I had already spent the Sunday before planning how much I would achieve and how this day would look.

Instead contemplating now, what the latest time difference in other corners would allow me to defer my chosen Monday chores to.

#monday #notsunday

Oops, I did it again …

I forgot this was here. Or rather I just didn’t post for a while.

Return, and then forget how to write.

Yet there’s so much damn stuff in my head that I just want to get out and splash all over a page.

So consider this my training wheels moment. Where I try to remember how to ride a bike, before I remember why I don’t ride a bike.

So many new faces. So many new places. So much to discover on this land of life and many words and fancy pictures again.

So I guess this is me, finding my feet and dusting myself off again.

Here goes something then huh?

staff

tumblr tuesday: stop and smell the flowers

So yesterday was…yesterday. But why should roses have all the fun? Let’s all just take a moment to stop the scroll, smell the flowers (metaphorically, at least), and maybe we can collectively dream spring into existence. (Southern Hemisphere, I’m sorry. You’re warm, and so this missive is not for you. But please enjoy the pretty art regardless).

@humblbee:

@gryffoon:

@flowerishness:

@histsciart:

@japanese-plants:

@havekat:

@dame-nostalgique:

@wahopuke5:

@lilblueorchid:

@nh-art:

@jigwaltz:

@maymaymakes:

@swan-bones:

@rabbitinthemeadow:

@duxuebing:

evermore-fashion

thebibliosphere

Hey I uhh spent a while looking through your health tag and I was wondering how do you manage to have the language to talk about your pain. To describe how it feels and where because right now I am a puddle of pain and can barely think well enough to to type this out let alone talk about my pain in a way that makes sense to someone who might be able to help or give advice.

I'm sorry to hear that :(

Unfortunately, Tumblr wiped out a bunch of the chronic pain tags when they did their NSFW purge, but I learned how to advocate for myself from other chronic illness bloggers, and also by working with a physical therapist (his tag on here is #magic physio man) who helped me to distinguish between different types of pain (sharp vs dull, acute vs chronic, radiating vs localized) and also how to rate them appropriately on those chronic pain chart doctor's have, taking into account that my baseline tolerance is much higher than the average person who doesn't live daily with chronic pain.

So say my baseline is a 5 daily, a new pain might push me to an overall 8, which is what I should relate to my doctor, not that the new pain is only a 3. If that makes sense. He got me to use the Defense and Veterans Pain Rating Scale to describe my pain, which is actually one of the more helpful pain scales out there:

Link to download PDF here (x)

Not every physician will be familiar with this scale, and you don't even need to tell them which scale you're using (I don't. Some doctors get surly over patients bringing this sort of thing to their own appointment, so I wait to see how they handle my care first before I bring my own resources to them), but it gives you the language to better convey your pain in terms the physician will relate to, and also what number you are realistically at.

From what you're describing to me just now, you're in the severe zone where your ability to focus is impeded. If I were telling a physician this, I would let them know my pain is around a 7-8, making it hard to focus, and prevents my ability to do daily tasks.

I would then describe what kind of pain it is, i.e.

Radiating: not in one place, possibly body-wide

Localized: restricted to a certain area, e.g. a toothache

Acute: sudden onset, usually from an illness or injury or surgery

Chronic: has lasted over 12 weeks, possibly a result of injury/illness or an unknown cause. (migraines fall into this category) Followed by a descriptor like:

Achy

Stiff

Burning

Stabbing or piercing

Raw

Cramping

Throbbing

Tiring

Heavy

Tender (sensitive to touch)

Shooting

Sickening

Other things they will ask include:

Does anything make it better/worse? What pain relief methods have you tried? Does it get worse throughout the day? Does it prevent you from getting restful sleep? How does this affect your mood? I'm sure I've missed something, but I hope some of that is helpful for you and maybe gives you some of the language needed to advocate for your pain. Take care, and I hope you get relief soon!

lilmissworld

Adding to my page so that I can find it in future, before it becomes one of those things I remember but forgot but can’t find but know it’s here.

Inevitable or questionable

When you find yourself searching on the internet for the answers to “how to know if your relationship is over”, does that mean it’s already over and you’re just convincing yourself? Or that you’re hoping for something that suggests that there is still more life in it than what you currently can see or feel?

Freedom. Beauty. Warmth. Love.

#myperfectstorm

juansendizon

“You will never find peace by trying to figure out everything all at once. That’s a recipe for overthinking, constant rumination and mental exhaustion. Why not choose to blossom instead for just a little bit day by day? Grow the small habits, the small ideas, and the small changes instead for just one step at a time. Cultivate your capacity for mindful awareness by doing just one task at a time and see where those soft bits of choices lead you. Then you can erupt in abundance starting from there.”

— juansen dizon, Becoming Yourself