I’m 43. Having illnesses as a child that impacted my family’s holidays, gatherings, celebrations etc., I have always felt like I was/am a burden on people. Most saddening, that I am a burden on the people I love the most. The people I only want to bring love, life and beautiful moments to. People tell […]
Having illnesses as a child that impacted my family’s holidays, gatherings, celebrations etc., I have always felt like I was/am a burden on people.
Most saddening, that I am a burden on the people I love the most. The people I only want to bring love, life and beautiful moments to.
People tell me I’m not a burden on them. But I tell me I am.
And as much as I fight it, my own inner voice, the 43 year old voice … the self-destructive one with roots clinging so deeply into the earth as if their life depended on it … that inner voice, is louder than those that are spoken from my loved ones.
I felt so lucky to be married to a man for 20 years, who always took it upon himself to tell me that he loved me and was never going to leave me. And somehow I believed him.
He became my carer, which is a hard thing to be. As my carer, he took me to doctor appointments, he called 000 way too many times than anyone should have to, he spent many nights trying to sleep next to my hospital bed, he watched me be unwell and have my life stripped from me day by day. For 4 years he did those things.
I have been, and sometimes still need to be, a carer for one of my daughters. And knowing how difficult being a carer can be, I made sure to try to get my husband all the support and respite he could get.
I tried to get him to see a therapist or support group where he could talk about the difficulties with the freedom of anonymity.
I tried to get him to go away for weekends or even whole weeks and stay with his friends or go wherever he needed to get rest and recharge his batteries.
I encouraged any hobbies he wanted to take up.
I tried not to get in the way of anything he wanted to do.
He never took me up on any of my ideas or offers. (For whatever that’s worth.)
Even in our 20th year of marriage, and even being my carer and all that comes with that, my husband still told me that he loved me and he was never going to leave me, and I felt so confident in his words. I figured if he was no longer feeling that way, he’d tell me.
A couple of months after the last time my husband told me he’d “never leave” me, he told me that he was “too tired to care anymore.”
One month after our 20th wedding anniversary, my husband moved out.
Because I was a burden. Because all of me was too much.
In two months I had become a burden. Or maybe I had been one for much longer? How long I had been a burden isn’t important.
What’s important is that I had lived my whole life with absolute conviction that I was a burden on people. No matter the relationship type, I still felt like I was a burden on them and they were better off without me in their life. Until I met the man I married. The man I spent 20 years married to.
That man convinced me that I wasn’t a burden on him. That man convinced me that my fear of always eventually becoming too much for a life partner, was just a fear.
For the first time in my life, I had allowed myself to think that there was a possibility of not feeling like a burden. And I felt secure that my husband wasn’t going to leave me.
I don’t want this message to come across as a blame message. It’s about my own belief of myself. My own judgement of myself in this situation.
I just wish I’d never believed it … that I wasn’t a burden. Believing it opened my soul up to be crushed, wrecking ball style. Believing it meant I would still be trying to put the splintered pieces of my heart, soul and mind, back together again, two years on.
To be clear, I wasn’t heart broken because of the love that was lost (that’s a whole other message). My heart, soul and mind were crushed because I had allowed my whole self-belief to change because of what this one person said, and suddenly they were proving my original belief about myself correct. What they had said, what I had believed, wasn’t true.
People are naturally flawed, beautiful, and complex beings. Relationships even more so.
Life is chaotic. Sometimes achingly blissful, sometimes stunningly heart breaking. But always chaotic.
I don’t think I’m shallow or naive. I know that people are all different. We’re all fighting our own battles, we all have our own stories, opinions, beliefs, choices, our own views on every situation. And we’re all living our own chaos.
I just wish I’d never believed it.
Go gently with people.
Recovery is an unsteady beast.
At this point, with some of the horrific complications that have happened, my recovery could easily not happen – especially when so much of the battle is mental and my mental health state is so difficult (I’m seeing an excellent psychologist.)
I’m grateful for my mother and father, my beautiful daughters and my one friend who walks the walk, their support helps me get through every day, even on the days when I can’t talk to them.
Thank you, my support tribe.
Love to all,
… no good, piece of shit, lazy arse, good for nothing, shouldn’t be here, who’d you think you are, moron.”
That’s what the inside of my head says.
Shout out to: Crap self esteem
Shout out to: Self-hate.
Shout out to: Zero self-belief.
Shout out to: Tremendously low confidence.
Shout out to: Believing you’re a burden to anyone who is unlucky enough to cross paths with you.
Shout out to: CPTSD (Complex Post Traumatic Stress Disorder).
Shout out to: Complex Trauma Syndrome.
Shout out to: Abuse … of any kind.
Shout out to: Domestic violence.
Shout out also to: Change, the possibility of it. To self forgiveness. To believing you deserve it, whatever it is. To holding onto hope like your life depends on it. To waking up each day and forcing yourself to move toward getting your life back, no matter how testing and unachievable it might seem, no matter how painfully difficult.
Shout out to: Holding on. Again and again and again.
And lastly …
Shout out to: Tears. To letting them out, not feeling like you need to hide them. And to letting them lay when and where they fall.
Tears are not a mess we make that needs to be cleaned up, they’re just a visual expression of feelings that needed to be uncaged.
Tears should not be felt as, or looked upon as, embarrassing. Tears should not be deemed as showing weakness.
And above all, tears should not be deemed as only something females do. Said ideology is archaic and damaging to both males and females o f all ages.
Let me leave you with a few may-or-may-not-be-wise words of advice, that I may-or-may-not follow myself but will definitely try to, and hope that you do follow.
The few may-or-may-not-be wise words of advice …
Try to hold on, believe in you and let your tears flow whenever necessary.
My love to all,
I have had a moderate to severe migraine for over a month now.
Can barely open my eyes, the pain when I do, soaring to the nerve centre of my brain and tripling the pain.
I’ve so badly wanted to write a blog post, but opening eyes, reading or writing text is debilitating.
I need to do something, and want to share my thoughts and experiences on so many different topics, but this migraine is kicking my arse.
So here is my something.
It’s a piece of shit something. But it’s a something.
Here is my first in a while piece of shit something blog post which, no matter how much it sucks, is SOMETHING.
I will go to sleep tonight feeling the satisfaction of knowing that I actually got my piece of shit something done. Finished. Written. Published.
I know that no-one will read it, but I will also know that I wrote and finished it.
This is what a PTSD attack looks like for me.
Sometimes I’m a lot more physical than I am here. Rocking, pacing, and other things.
No one can touch me when I’m in this state. The sense of touch makes me want to crawl out of my skin when I’m in this state.
PTSD attacks feel nothing like anxiety or panic attacks, to me. Completely different things.
For me, panic attacks definitely have a sense of extreme agitation but fear of impending doom or some other or many horrors heading right toward me is a staple sense in panic attacks for me.
I’m lucky that I haven’t had panic attacks in a very long time.
PTSD attacks are always triggered by a trauma I’ve experienced in the past.
And when having one of those, I’ve got fireworks going off in my brain. A million thoughts colliding into one another, so finishing any one thought is near impossible.
I’m having rapid random flashbacks to the traumatic experiences that caused this train wreck of memories in the first place.
And during this episode I’m convinced that whatever triggered this attack is my fault.
There’s no shame in not having a perfect life.
There’s no shame in any of what you feel are your flaws.
It can be so hard to fully realise and accept that. Full honesty …. I haven’t fully let go of the shame I feel in it yet. And that’s okay too.
Everyone’s experience of PTSD is different.
Just as everybody’s journey to acceptance, whatever they’re trying to accept, looks different, too.
I feel tremendously embarrassed in posting this video.
But I’m doing it for 2 main reasons:
1) I just want others out there, perhaps drowning in their complexities, to know that they are not alone. And that I see no shame in them.
2) I feel that letting people see this, is part of the landscape of my de-shaming.
*Feel free to share this post or tag someone in the comments, if you feel it might help someone.
Zoe Inez xxx
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.
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?
I wish it shouldn’t matter, but it does.
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.
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.
Currently All Round Messy and Emotionally Confused but Getting There,
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.
P.S. *Spoonie, in short, references to people living with chronic illnesses.
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.
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.
#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 🌈💜✌🏼
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.
Have a wonderful day/night/moment.
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.
… 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…
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!”
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…
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 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.
Remember to like this post.
Share, if you loved it or relate to it or want to explain chronic pain to your friends.
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See ya later, beautifuls,
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!