Glass towers….

Warning: This post is probably going to contain some of the most graphic language I have ever used in a blog in my entire life. Why? Because I’m not sure my regular, every day words can express my disgust at what’s happened to me in the last few days.

I was born into this world broken. 

And that’s ok. 

I was born with Crohn’s Disease, Sweets Syndrome and Wolff Parkinson White. I may have more going on than that, that’s only what they’ve been able to find, so far. Auto-immune disease tend to cluster. 

And that’s ok.

I make the best of what I can every day. I do the most I can on any given day. Some days, that’s not very much… some days getting out of bed is an achievement for me.

And that’s ok.

Somedays I can literally feel the electricity bubbling out of me and I can do a lot – I can do everything.

And that’s ok.

I try never to bore… burden (I’m searching for the right words here) people with what I go through on a daily basis… Because – that’s my stuff. I don’t normally talk about what just getting through a day is like… Because – I assume that people can see me trying. 

Do you know when it stops being ok?

When someone who’s not me… who’s not even here to see what I have to deal with in a day… starts making judgement calls on what I should and shouldn’t be able to do.

That’s NOT ok.

What makes it worse is this person – is a “healthy” person.

So – for my audience of probably one (myself). Here is my fucking reality.

In 2013 I had 30cm of bowel cut out – because Crohn’s Disease was killing me.  It was literally going to kill me if I didn’t take that action. I didn’t want to die. I did what I had to do. It hurt. The first day was excruciating… I cried, I screamed… I was in pain. It passed. I healed from the physical result of the surgery. 

Crohn’s isn’t JUST in your bowel, it’s everywhere… it’s in my joints… hell, it’s in my fucking DNA.  Let me tell you what Crohn’s is still doing in my body… My joints are swollen and the ache every second of every day. I’m so fatigued from fighting this fucking war my body is waging on itself that I’m lucky I can stand. I can’t take regular pain killers because it ends in days of constipation followed by days of embarrassing diarrhoea.

The medication to keep my Crohn’s in remission (so the symptoms I’m describing are what I get regardless) makes it hard for me to breathe – I feel like someone is sitting on my chest most of the time… I have an almost constant headache as my liver struggles to process the poison my doctors pump into me. It leaves me more fatigued, sometimes confused and listless… the constant headache about 3 times a month turns into a migraine that I can only escape by taking dangerous amounts of Aspirin (please see above what pain killers do to me)… 

I have Wolff Parkinson White – it’s a heart defect I was born with. At first the symptoms came on slowly, now on average, once a week my heart – misfires. The blood drains from my face… and my heart explodes into tachycardia. I’m taking about around 160bpm resting. This does two things – it makes you feel like you’re going to pass out and throw up at about the same time. Your body starts to sweat even if you’re not hot to try and cope with what’s happening. You become disoriented… confused. 

Sweets syndrome is probably the least of my problems… my skin flares up – the same as the rest of my body… it becomes red, then as little blisters burst, it becomes raw… It get’s infected… hot to the touch… it hurts… all the time.

All this – is a daily thing for me – and that’s ok, because I make the best of it.

The other day – I was told in addition to the 40 hours a week I already work – I needed to produce some ludicrous amount of overtime…. Well – my response to that is a big FUCK YOU. Seriously, if you’re reading this, FUCK YOU. FUCK YOU for not asking how I am. FUCK YOU for not trying to understand what I go through just to come in here and be treated so poorly. FUCK YOU and your perfect fucking life – because you have no idea what it is to suffer – to fight for every single step. Your life is charmed. Beautiful. Perfect most would say. FUCK YOU for not taking the time to look down at who your stepping on. Just FUCK YOU!

I mean every word… every syllable. I’m tempted to throw open my freelance books and let them see I haven’t written an invoice since December last year… to read my emails telling people I’m too ill and impaired… but no, as I said FUCK YOU. Fuck you for not taking the time to get to know me. You are the fucking problem when it comes to chronically ill people. You’re THAT person who sits in their perfect glass tower in judgement. Until… it happens to you. I don’t wish that on anyone – not even the people who make light at the hardship they put me through. But when it happens, and odds are, one day it will. Look back on the time you could have extended a hand – even just a fucking word of kindness and you’ll know what a difference it would have made. When that time finally comes… I’ll be thousands of kilometres away… living the life I dreamed of. And when you call for advice or help. My phone will ring out.

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