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

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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.

 

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.


💜✌🏼

Thank You Note

I wanted to say thank you to all who reached out to support me recently.

It was both unexpected and touched me deeply.

I had a supportive Skype consultation (because I couldn’t get there physically) with my physio yesterday. We discussed my deconditioning and medical induced PTSD in relation to what needs to be done for me to actually make it out of this shithole.

That conversation was a scary one to have. We got real. Like, really fucking real. *Side note: fear is an emotion none of us want to feel, but it is so helpful to try to understand that fear is a natural response (we’re not weirdos or weak if we feel scared) and also try to empathise with ourselves and why we’re feeling that fear. Just can sometimes help take the edge off the fear-of-feeling-fear downwards spiral that can sometimes take over*

As well as being scary, that conversation also helped calm my shattered nerves and put a plan in place, that gave some solidity and boundaries back, to a chick who was feeling like she was trying not to die while crawling across an ocean of quicksand.

I’m leaving the house tomorrow. Big accomplishment for where I’m at right now.

Although, I am leaving the house tomorrow to see my therapist. So, things could go either way for me on that one.

Anyway, that’s my update for you lovely supportive souls out there.

Lastly, those who know me, know I can’t leave a “touched me deeply” remark go unappreciated. So … remember, last time you supported me, it was almost penetrable — thanks a bunch you magnificently filthy people, for touching me so, sooo damn deeply.

Nothing like a good support-orgy now and then.

____

P.S. the photo is my hairbun, and an achievement in itself because, until I found my new #EDS physio, my neck and headaches had been so bad I couldn’t grow hair long enough for a bun.

BUN FTW!!

Love, Zoë

#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 🌈💜✌🏼

Age Doesn’t Have To Be A Thing

THIS DUDETTE GOT HER FIRST ELECTRIC GUITAR AT AGE 41!!!!

I know I’m no beacon of light or possibilities to anyone. But if maybe, just MAYBE, by being loud and proud about getting my first electric guitar in my 40’s, someone somewhere out there might just not feel so embarrassed about deciding to chase a passion or an almost forgotten dream, no matter what their age!

I feel like a complete outsider to this world of guitar playing and songwriting. I feel embarrassed about learning guitar at this age and I feel ridiculous about writing songs at this age, too.

Some of that is due to the restrictions my health complexities put on me, but also just that I don’t fit the traditional stereotype of the young, beautiful, talented up-and-comers, that fill the music sector of IG.

I feel like I’ve got this huge crush on all the talent and ability that I see in all these beautiful guitar playing videos and these soul-moving lyrics/songs I see pouring out of all you amazing artists out there. And I’m constantly waiting for the crush to reject me.

I love you all, you all inspire me and I’m continually surprised by the moments of sheer blissful whispering, it sounds like your music is making. So thank you for bringing that magic to the table.

I’m just a 41yr old dudette. Beginner guitar student. Beginner songwriter, who doesn’t quite fit the look. And guess what?

The amazing fact is that starting out so late, for me, means I’m heading fast towards the ‘give no fucks’ stage of life. And I hold onto that.

So I do what I do now. And I try to not get too down on myself for my music and songwriting journey being so much slower out of the gates – and just so much slower on the daily.

And I focus on my love for what I’m doing. .

So keep focusing on the parts of your life you love, and try not to slip into the cracks of embarrassment or why-the-fuck-am-I-trying-to-do-this-torturously-difficult-thing-at-THIS-fucking-age?

ENJOY! Whoever, whatever and whichever age you’re at.

ENJOY!

Have a wonderful day/night/moment.

Z 💜✌🏻

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.

💜✌🏼

Just Wanted To Say

Sometimes, after another health event, someone will say:

I don’t know how you keep going.

I’d just like to clarify something, and that is …

Sometimes I don’t think I can.

Please Don’t Believe In Me …

… because honestly, it would be so much easier that way.

The drums of negative self-belief could keep beating. My heart could stay caged.

The comfort zone of all I have ever seen could remain securely in my surrounds.

I wouldn’t have to step even a toe through that grating, uncomfortable barrier that has been gripping me so tightly.

I could continue to avoid confronting what has kept me here…

…in this place of “I can’t” and “I don’t deserve”.

I can dodge the pain that comes with asking “Why?”

I could continue to feel as though all is right when I stay small.

I could avoid the fight.

But ya know, I can’t do any of that, when you take my hand and walk with me to the land of ‘can.’

When you gently and magically clear the dust and show me what could be.

When you matter-of-factly show me what I could do. How I could feel. What I deserve.

When you tell me you think I can.

These notions fill my mind with crazy ideas of…

Hope.

Belief.

Pride.

How about..

Confidence?

Strength?

Capability?

I have only started feeling these things since allowing the thought that I might be entitled to follow my passions.

And now, as I stare down the barrel of facing that internal dialogue, this crap just gets louder and louder.

I know I have to move through them all. And I will. And it will be a sublime day when I reach the other side.

If we ever reach the other side?

Whether you relate to my self-belief journey or not, doesn’t matter to me.

I read and hear your journeys and they fill me up with such admiration. You give me a sense of tangible possibility.

“If they can, I can!”

And someday, maybe others will say, “If she did, I can can too!”

Z xxx’

I Wish You Support

Someone asked me today, ‘Do you have support?’ I’m lucky that I could say yes. An absolute, unequivocal YES!

My family and friends who support me are angels.

It’s not easy to support a chronically ill person. I get that. It’s hard to see someone you love hurt, weak etc. And it can be physically and emotionally hard to help or even just watch someone you love be chronically ill.

My support family make my life bearable. That sometimes we can laugh about some pretty serious issues, and at other times come together and find a solution to a problem we never thought we’d solve, as if pulling a solution out of a magicians hat, is remarkable to me.

My support team are my soft place to land. They are my reminders that there are good times ahead.

They are my ‘I can’ when every part of me is screaming ‘I can’t’. Thank you, support team. I love you now. I will love you forever. And even though sometimes it’s hard to see, I am appreciative of every second that you make me feel worthwhile of care and love.

My wish for everyone with a chronic illness, or fighting a battle – any battle, is that you either have your support family already, or you find one, because you deserve one — and you can add me to it if you wish!

Here’s to our support saviours. Our earth angels!

Thank you, thank you, thank you! (Tag someone who is a support angel for you.)

Photos: A big part of my support crew…

Had Myself A Little Thought

Just wanted to say…

You are so worth every bit of luscious love and care you can muster up and give to yourself. You are you. And that is gorgeously right. 🙂

It is so important that we take the time to think about what satisfies us in life.

At some point our journeys are most definitely going to end. Not much we can do about that. But we can do quite a bit to create satisfaction while our journeys are still operational!

Take the time to ask yourself if you are happy with how things are, and if you are not, then ask yourself if there is anything you can do to change that. There may be some tiny little moment in your day that you can tweak that will make all the difference. Or you may realise that you want to make drastic changes.

Make sure you are giving yourself the best chance at happiness. Make sure you are choosing for you.

I don’t mean this in a fluffy, life-can-be perfect-if-you-just-think-positively-enough, kind of way. But I do believe we are all making choices every single day that have results one way of the other. Whether they are small or big, they are still our own choices to make.

On another note, I’m looking so forward to seeing my physiotherapist soon and getting back onto a recovery plan.

✌🏼❤️

So I Did This Ballet Thing

So yesterday I was doing my usual VERY limited ballet/physio routine, basically just tendus: one to front, one to side, one to back – then repeat on the other side. But I added some developpe-ish moves to the end of my session.

I happened to be recording that ballet/physio session, and when I looked back at the video I was so happy because I’d just done something that I thought would take years to be able to do.

(video is at bottom of post)

And when I think about uploading the video to share my celebration with others, I get an all too familiar interruption to my joy. Because, unfortunately, there is a huge disparity between the amount of people who understand chronic pain and the amount of people who, despite having zero understanding of chronic pain, feel that they know what people with chronic pain should and should not do and they need to share their based-on-nothing opinions with people who have chronic pain.

But here’s the thing, chronic pain sufferers have lived with pain for a long time. Hence the word chronic. And when you have something chronically, you learn to adapt.

So I’ve learned to do things in spite of my pain.

The kind of comments I will get after doing those extra movements, for instance, will be:

“You must be in less pain to be able to do that?”

“I thought you were in pain?”

“It’s good to see your pain has gone away.”

And then later that might or the next day, if I’m feeling pain FROM ANYTHING, those people like to pop out one of an assortment of these crackers:

“Well, what did you expect when you did that extreme move earlier?”

“Well, you’ve learned your lesson now, haven’t you?”

“I suppose you won’t be doing that again, will you?”

And all that crap ruins the moment for me.

So listen up dudes — all I want to do is celebrate the fact that, IN SPITE OF MY PAIN, I just pulled off a movement that I didn’t think I’d be able to do for years.

So please, come on guys. Come and celebrate with me!

*note: I actually didn’t experience any pain from doing my developpe-ish moves.

*note 2.0: I did get a shitload of pain from showering and getting dressed today, though.

Video …

❤️

Remember to like this post.

Share, if you loved it or relate to it or want to explain chronic pain to your friends.

And follow me on all my socials which are listed over there ————–>

See ya later, beautifuls,

Z.

Everything Has a Beginning…

This blog is no exception to that rule, needs her own beginning, so I’m starting now.

My name is Zoë. I am not a thing, like a florist or a teacher etc. But I have done many things.

I lived my whole life, a staggering 38 years, with ebbing and flowing ill health. Lots of illness. Unexplainable illness. Lots of doctor/specialist appointments. Lots of people doubting me. Lots of doctors suggesting it was all in my head, which lead to me seeing one of the best psychiatrists in the country for a few months (and he declared that I was a well adjusted human who was in a lot of discomfort). Lots of my peers not believing me and laughing at me for having unexplainable joint pains, that at times required me to use crutches.

Lots of not fun times.

I also had fun times, don’t get me wrong, but the illness induced not fun times were far too frequent for what I believe any child should have to experience.

I’ve had a lot of time to think a lot about living with chronic illnesses, during a shockingly bad illness flare (or decline — we’re not quite sure yet). And I feel the need to open thee discussion, or maybe just share my thoughts and experiences on that very topic.

So, that’s what this blog is starting as. Most blogs (that are committed to by their authors), seem to shift in content subject somewhat during their blog-life, so I won’t promise anything other than that what I have said I want to write about, is currently what I want to write about.

My main hope is to just shine some light on what life is like when living with debilitating chronic invisible conditions, in a society that tends to value healthy, strong people, over those with illness — who too often, seem to appear weak in both mind and body.

I feel there is a sigma around people who have chronic illnesses, and I’d like to begin to break that stigma down, let people into the experience of what I it feels like, and maybe create more inclusion into society for those with chronic illnesses and less isolation and loneliness.

So that’s it. That’s this blog’s beginning.

Cheers, guys. Hope you have some awesome moments!

Zoe xxx

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