Physio

ALL IS NOT WHAT IT SEEMS

Post-physio glow.

I will be crying and in unbelievable amounts of pain later on.

But I’m happy I got the second consecutive day of my new physio routine done.

It’s working every single part of my body … and every single part of my body is feeling it.

Invisible Illness

But It Really Should

I was out someplace. Someplace where I sorta-did/sorta-didn’t, know most of the other folk there. Everyone’s doing their own thing at Someplace.

I remember the state I felt I was in. I remember I’d dragged myself, with every ounce of I-Think-I-Can, to Someplace, that day.

I had been *regular person* sick for a couple of months (3 flues and a chest infection), but I’d also been behind the *regular person* scenes sick, for a bit longer now (blowing my stomach ulcer open which lead to vomiting multiple cups of straight up blood and my body deciding to not keep food down, a mast cell flare up which saw me covered in rashes and my body just generally reacting to everything, and, finally, some weird anomalies turning up in my lungs, intestines and brain.) I was fucked.

I was so done.

I’d reached I-don’t-give-a-shit-creek, my life raft was dodgy as fuck and letting in shit like there was no yesterday, and I was now unashamedly allowing myself to be taken by it.

I had surrendered to Shit Creek.

So back to Someplace and that day. As soon as I got to the door one of the sorta-know-hers took one look at me and said, with eyes a’widening: “Oh my god, are you sick again?”

I replied: “Not sick again, just still sick.”

She looked, understandably, like she hadn’t ever seen or heard anything like it.

She couldn’t wrap her head around how I could be hit with illness after illness? How a human could look so awful, without there being a reasonable explanation and/or a fix for this horror show she was watching.

As I lay, folded up trying to ignore my aching body, and clutching my soul, I watched her doing her pull-ups and realised that we weren’t just different — we were polar opposites. 

Her idea of what ‘sore’ feels like, her experience getting medical help, her ability to remain fit and (most of the time) illness-free, her ability to just keep getting as strong and fit as she desires with so many less roadblocks than me — and the radically different way society would judge the two of us on exactly the same topics … like fitness or our body sizes and my being overweight; on the days when I am not in the wheelchair, I would definitely be seen as overweight due to just not putting the effort in. Ah, jeez, the irony of that notion! That’ll fill another several blog messages.

Anyway, as I pondered all that, she lowered from one of her pull-ups, turned to me, and asked:

“AND YOU’VE SEEN A DOCTOR?”

By this point that question just makes me laugh.

It shouldn’t make me laugh. But my life’s experience has taught me that there’s laugh or fall into a deep dark depression. 

And somehow my choice is mostly to laugh.

I nodded and mumbled a ‘Yeah, yeah.’ And then I saw it. That look on someones face when they can no longer even digest anything you say about your health. I saw it on her face.

So I quickly said:

“IT REALLY DOESN’T MATTER!”

I said this as a really fast reflex … to stop the swirling of going-nowhere thoughts that I could see were running round her mind.

And it worked. 

She shrugged sympathetically, but then I could see her face relax and she got on with her business at Someplace.

Later that evening I had a moment of physical reprieve, which allowed a very clear thought to occur to me, and that thought was…

IT REALLY SHOULD MATTER! 

Why on earth was I thinking or saying that it doesn’t matter?

Sadly, it showed me how much the medical community has mentally battered and bruised me during my lifetime thus far.  

Positively, it showed me how much the medical community has mentally battered and bruised me during my lifetime thus far AND how angry I am at that AND that I am determined to see this changed. 

People think/talk all the time about what imprint they want to leave on the Earth. 

Well I hope to leave the Earth a place where people with invisible chronic illnesses NEVER EVER say ‘It doesn’t really matter.’ Where they never BELIEVE It/They don’t really matter, because they absolutely do.

We all do. 

Milly with Happy
Uncategorized

When Beginnings End

I never knew love could hurt so much.

I’m coming to the end of a 19 year marriage. It’s amicable. It’s a peaceful finale. I’m constantly aware of the reasons, the logic, the adjustments … they’re all easy to see, they’re ever-present.

As it turns out, the end isn’t the hardest part for me.

For me, the hardest part of the end is remembering the beginning.

The beginning is an innocent. It knows only of hope and endless possibilities.

It’s a beacon of light, reminding hearts of their way home to one another. 

It’s a soft place to land.

In the beginning — there was no end.

And however real, the end I’m now standing in may be, it doesn’t make it any easier when I remember what the beginning felt like.

But I do recognise that I’m not the only person to have ever gone through this experience. Obviously!

And I can see that so many people go through this situation and have so many different experiences, all the time.

So I want to put forth the notion that in this emotionally confusing time when we are separating from loved ones, we might also be able to take action, no matter the size, and help remind other people going through this, that whilst they are separating from a loved one, they’re not separated from everyone.

So this is my action. A small blog post, telling a bit of my story, for my own therapeutic benefit, as well as to possibly help someone who may stumble across it and feel a little more connected, during their time of separating.

And especially express that I don’t believe there is any “normal” way to experience this. However you’re feeling, is your way, and that’s okay. We all have our own ways and they’re all okay.

We’re all okay. No matter how fragile we feel and for how long we feel that way.

Separated but together … we’re all okay.

Be good to you.

Love,

Currently All Round Messy and Emotionally Confused but Getting There,

Zoe xxx

cropped-img1563954537297

 

 

Uncategorized

Too Tired For This Shit

So tired.

So so so fucking tired.

And so so so fucking tired of feeling tired.

But it’s okay, because all I have to do is look at nature’s flowers and my spirits are uplifted, I’m suddenly riding a raging florgy. 

And I can always just think of happy thoughts and that will make me well again, too.

The only thing I’m more tired of, than feeling tired of feeling tired, is the bombardment of people (both on and offline) telling me that all my health concerns will be gone if I’m just more positive, or if a do their latest favourite juice cleanse or whatever other naive piece of advice they desperately need to offload onto me.

I am waaaaay too tired for this shit. It makes people frustrated when others give this sort of unsolicited advice, and it gives way to much power to the shame game.

Miracle cures … something, that after 30 odd years of hoping for, I now have a healthy understanding of just how non-existent they are.

I wish we all, in the health/chronic illness realm, could support and respect each other and not force the strategies that work for us, down other’s throats.

Note I used the term ‘force’. I think it’s great for us to share the things that work for us, but I also think it’s very important to do so with the acknowledgement that we realise our strategies might not work for everyone. This is how we share information that might  actually serve our community, that might be incredibly helpful, whilst also supporting and holding each other up.

Crazy health journeys are difficult and isolating enough. 

Let us celebrate our shared experiences as well as our differences.

I’m the only one of me. And you’re the only one of you.

We can only manage our lives with what works for us individually.

So if flowers and nature does help you, fantastic.

If your hobby helps you, great.

If your job helps you, brilliant.

If animals or your family do it for you (in an appropriately boundaried manner), fan-bloody-tastic!

All I’m really saying is that I think it’s so wonderful and useful to have something in your life that helps you to keep on keeping on, but let’s not become part of the shame game — let’s continue to help a spoonie out.

xxx Zoe

P.S. *Spoonie, in short, references to people living with chronic illnesses.

 

Uncategorized

HOODIE HIBERNATING

A well established self-saboteur who can see something good coming her way, but is trying to intercept the self-sabotage reflex = me needing some hoodie hibernation time.

Not everyone will understand this photo and statement, but for those who do, I want you to know if you’re trying to change that habit, you’re not alone.

This might look like a ridiculous photo to many people. And that’s okay. For those it looks ridiculous to, congrats on not needing to bury yourself in a hoodie. You can scroll right past this post.

But to those who relate to this. To the hoodie hibernators , I say this…

You are working on creating a new normal, and creating a new normal is painful, courageous and insightful. It also comes with a side dish of blow-you-the-fuck-wide-open, which just never ceases to catch me by surprise. You must face feeling an intense level of vulnerability that is rarely felt. You feel translucent.

You have to face your internal dialogue, which for me is feeling foolish, idiotic, undeserving, worthless, pathetic and more.
But I have to feel all that, and continue on my path anyway. Otherwise the new normal never eventuates.

And sometimes, hoodie hibernation is all that can ease some of that discomfort for me.

So, to myself, and everyone else who is creating a new normal … I highly recommend a little hoodie hibernation time when things feel like they’re getting too much.

Just close that hoodie down and sit there for a while. Then when things have settled a bit, release those hoodie strings, set a small goal, and head towards it.

Here’s to creating a new normal! Everyone can do it, but it takes a truckload of grit.

Make the choice to be your own hero today/tonight. And take one step towards your new normal.

Love out to the world.


💜✌🏼

Uncategorized

#TB #GOALS

#tb and #goals 💓

Not a day goes by that I don’t think of the fight I’m in right now and the fight that I have ahead of me, in order to get some kind of a life back.

I see photos like this one (below), from before my health spiral/degeneration, and it’s a bittersweet feeling that surrounds me.

But ultimately I can either choose to find hope and hold onto it with all my might, or give up.

And I suppose in a twisted way, it’s the knowledge I have of where I’ll end up if I don’t keep going, keep clinging to the search for hope, believing I’ll find it someday and believing that I am strong enough to make it through this reconditioning-storm, that keeps me headed in that direction.

Sometimes you’ve gotta see how bad it could get before you understand the changes you have to make in order to not end up in that worst case scenario.

I fully understand how lucky I am that I CAN see that other path. That I do FEEL I have a choice.

I haven’t always felt that way.

Much love 🌈💜✌🏼

Uncategorized

Hope

Don’t get down on yourself today.

Give yourself a little give today.

You don’t have to master anything today.

You don’t even have to master trying, today.

You know what? Today just might not be your day.

We all have those days. Most people don’t have too many of those days back-to-back, others do.

I’ve had a seriously shitty five fucking years now. I mean a SERIOUSLY fucking shitty back-to-back five years.

And most days I’ve been able to find at least one thing I’m grateful for.

I feel like gratitude just helps me remember hope.

And hope is kryptonite to today’s-not-your-day.

Or for the last five years not being your five years.

So gratitude is something that reminds me of hope. But it might not be your thing that helps you find hope.

But my thought here, for y’all to take in or to not take in, is that you might want to find something or some things that are your reminder of hope.

Today doesn’t have to be your day.

But when you have hope, you have hope for better days than today.

And that hope of better days conjures up feelings of excitement and curiosity. And that excitement and curiosity provokes thoughts of what experiences lay ahead in new days, in better days, in days where open possibility lay.

That’s the stuff that helps it not be such a bad thing for today to not be your day.

DO NOT GET ME WRONG HERE!

I am not suggesting for one second that finding a way to remember hope on your bad days means you don’t still feel shitty about the current storm you’re in.

I’m not selling some form of recycled bullshit optimism, here. Or any new forms of bullshit optimism.

Not that I have anything against optimism. Optimism can be awesome. I’m a hideously optimistic person, myself. It took a shit load of seriously fucked up moments/days/nights/weeks/months (during my five not-my-years) to break my optimism. And it still didn’t break completely. But now, what was my armour of optimism, has a heap of bullet holes in it, and cracks and tears at the seams from the battle I’ve been fighting.

So now, I can still see optimism. But I can also see through the bullet holes, cracks and tears. I can see through them to my damaged reality. I’m frequently forced to just exist in my damaged reality … with no armour at all.

The thing about optimism, and ‘positivity’ is that I think there is so much pressure on us all to be happy people. Don’t let anyone see that your life sucks a bag, now and then.

There’s this feeling that you’ll be outcasted. Thrown from the tribe of humanity, if you’re not shitting rainbows every fucking day, if you admit that you only served the kids baked beans for dinner and that rather than feeling guilty, you found it soothingly hilarious that their classmates were going to suffer the consequences the next day, or if you dare to enter the realm of self-love/hate and admit that when you look in the mirror you don’t like what you see or you DO like what you see (you can’t win with that one!)

The world tells us that nothing is out of reach if we just have a positive attitude. And I’m calling bullshit on that one. Actually I’m knowing bullshit on that one.

I don’t want people to feel bad for not feeling good. I see it everywhere. And it makes me sad.

So I think maybe we could separate hope and optimism.

I don’t think that your hope needs to coexist with optimism.

You don’t need to be optimistic to hope.

And it’s okay to feel hope but no optimism.

I’ve had five shitty years. I’m into my sixth.

And whilst there was some relief when I finally surrendered to the fact that this is just the hand I’m playing with right now and I only have so much control over my life at the moment.

At the same time it was tormentingly harrowing when I initially felt completely empty of optimism at times, and when I tried to find it but all I found was physical pain and emotional loss, sometimes devoid of the ability to see the point to anything anymore.

That’s the loneliest place I’ve ever visited.

But at some point I started to find things that reminded me of hope. And it is those reminders and hope, that save me. Every. Single. Day.

That I could be in such a dark place, and still see hope at the same time. I can FEEL something terrible, but SEE something okay, maybe good even, but not need to feel optimistic, was a massive load off, and helped me to be a little kinder to myself.

If you try to feel optimistic when it’s just not your day/week/year, you can end up just feeling worse. You can feel like you’re failing.

So if today isn’t your day. That’s okay.

You’re not failing.

Don’t get down on yourself.

(If it helps and it’s consensual, maybe let someone else get down on you today?)

Give yourself a little give today.

(Damn! Amazing how fast this post went from sympathetic to sexual.)

In all seriousness, if today wasn’t your day, if you fed your kids baked beans for dinner, and you shat a regular shit … that didn’t look anything the fuck like a rainbow.

I don’t want you to worry. I know I can’t control how anyone else feels. But I still want everyone to feel okay with themselves.

If this isn’t your moment. You’re not failing.

If today isn’t your day. You’re not failing.

If this week isn’t your week. You’re not failing.

If you feel invisible. I want you to know I am thinking of you now.

If you feel it’s never going to end. I wish I could tell you it will end, but I can’t. But I do want you to know that I completely understand you, I know what that feels like. I feel it on the regular.

The thing I wish the most for you, though, is that you can find some hope. And what reminds you of hope. Because if find those, you just might feel a little better about this day that wasn’t yours.

But if you just can’t feel hope. Or feel that all hope is lost. I want you to know, I’m hoping for you now.

I am hoping for better days ahead for you.

💜✌🏼