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

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