Letters to my daughter.. Part one.

You remind me of myself so much that it actually scares me.  My beautiful girl.  Here I was all those years ago thinking you'd been freed of the 'mental health' curse.  I couldn't get that lucky.  I blame myself for everything.  Your SA, your anxiety, your depression, your dark thoughts, your self harm, the constant urge to hurt someone or yourself so badly, suicidal ideation, mania - you and I are mirror images, and that scares me so much that I don't think I could ever be honest enough to tell you..

Your uncle seems to like to vilify and rehash the fact we let the ball drop and let a predator in our house.  I don't think I'll ever forgive myself for that, and each time he brings it up my tummy turns into knots.  It's unfair, yes, justified, not really, should he move on, yes but he can't.  Sometimes I just wish you had a normal uncle & auntie that loved to spend time with you without 'conditions' - 'oh you have to promise you won't do stupid shit, then you can come stay', 'oh, you're definitely not coming to stay now with that behaviour' - so much judgement from someone who was not an angel when he was young. Albeit, he didn't do things to hurt our parents, we had too much respect for them, but what they didn't know didn't hurt them and that stood firm..  The uncle I thought he'd be is nothing of which he is, that hurts me. And sadly, I know it hurts you to have so many conditions to be in his company. I'm sorry.

So far 2022 can kiss my ass.  It's been the most unpleasant start to any year since I got sick.  I know it's affected you and I am trying to keep a lot from you, I really am.  I am fiercely stubborn, but you my darling are too.  You're a warrior, I can see the fire in you - don't ever lose it.  I will be ok, I don't know in what capacity, but once I get some procedures done and maybe change up some medications and some hope I might just be able to walk properly.

Keep being you.  Do your silly TikToks, walk to the park & watch the water over the rocks, dress in your hippy pants & tye dyed shirt, sleep in your mickey mouse bedding, watch those horror movies (I'm proud of you!) eat those cornflakes and honey.. Just be you.  Don't let the assholes steal your light.

I love you,

Mumma Bear

Hospital.

Well.  What a week from fucking hell.  Tuesday.  The day was planned that my friend would come over and help me with the vacuuming after I injured my neck over 2 weeks ago now.  She said when she got to my house that I didn't look well, and I said that's funny as I didn't feel well.  I felt strange, like the calm before the storm.

Sure enough it was.  By 11am I was crippled with pain in my left side.  Unable to breathe properly, sweating profusely, disorientated, rocking myself in some sort of way that I thought would help my 15/10 pain.  My friend rang the health line.  The nurse could hear me moaning in the background, she immediately said 'I'm calling an ambulance, stand by' - that's all I really heard after telling her in between trying to breathe what brought it on (no idea) what my pain levels were and how I ended up slumped over my chest of drawers in my room.

Around 11:30 a paramedic arrived.  He was the most arrogant prick you could have ever sent.  'Stand up' - ah, I can't dickhead.  'Why haven't you taken any pain relief?' - well, as you could probably tell (or not, depending on your brain capacity) I couldn't speak, nor move and was around 2 meters from my drawer with said pain killers in it.  Asshole.

He proceeded to say 'What you have is stronger than anything I have' - good for you! That's fucking amazing.  He made me take one of my pain killers then proceeded to give me this green whistle... Well let me tell you this.  I went from crying in agony to laughing my ass off, according to my friend I was telling the dude that my son was 6 (he's 2.5) and a whole heap of other irrelevant stuff.  Apparently I was hilarious with this little whistle that tasted like I was inhaling nail polish remover.

Hospital.  Well that's fun.  Sitting opposite the nurses station waiting for a bed.. It was peak hour.  6 ambo's came in after I was placed on a chair with a blanket.  What I saw wasn't pleasant and to this day I hope the young girl that had wrapped her car around a tree is still alive.. she looked peaceful though, almost like she'd passed on and they were doing everything to revive her.. From head to toe she was covered in blood.  I'd only ever seen something like this once and that freaked me out, this time she was literally 1 meter from me.  I had to bow my head & just rock.. 

A homeless man presented to emergency in a psychotic episode.  That was scary too.  I've never seen someone in such despair, the mental health team were doing all they can to get him fast tracked but it wasn't enough.. He needed sedation before he hurt a nurse or me (he was standing next to me for around 2 minutes..)  

I was taken to acute where I had this fabulous doctor tell me that it could be a couple of things causing my agony..  A perforated bowel.  Epiploic appendagitis. Or a fucking big kidney stone.  The epiploic appendagitis mimics an appendicitis.  That's EXACTLY what it felt like, when I had my appendicitis I felt like I was in labour... So, we were hoping the CT scan would show this, we'd fix it all good.  Not my lucky day.  A cyst was found on my left kidney, but this wouldn't cause the phenomenal pain I was in..  Back to square one.

I was pumped full of pain meds.  Endone. Fentanyl. Morphine. Repeat.

The only thing that took any edge off my pain was morphine. So my lovely doctor gave me another dose and my pain went down to a 7.

I was moved to short stay, and my lovely night nurse tried to make me as comfortable as possible to try and get some rest.. She gave me valium, buscopan, and this morphine type tablet that went under my tongue.. Can't think of it's name but it was effective.. 

I couldn't shut off.  I messaged my mum (who was staying at our place to look after my kids) for a couple of hours, she couldn't sleep and neither could I..  I was still upset that my husband didn't even bother to come in and see me.  When my doctor asked if I was supported at home with my fibromyalgia & mental health issues, I looked at her and said 'No.'  She was quite sad that I could only rely on my parents and 1 friend for help & support.  That's when the tears started.. I think I cried solidly for 2 hours.  I couldn't bring myself to call my husband because as far as I was concerned, he didn't give a flying fuck about me so why call?  It took me until 10pm to make the call.  I was cold toward him, he didn't pick up on it - he's male, they only care about themselves.  His best mate was more concerned about me than him - sad huh.

The lovely nurses let me rest until 0820 because they knew I'd had a bad night (not asleep until around 3) they came to do my obs, and said I'd be going for an ultrasound and that the surgeons would have a chat to me about the cyst.  I said thank you & grateful a plan was in place.

Cue asshat registrar.  

He told me as there were no significant findings on the CT & X-Ray other than the cyst.  He couldn't give me a reason for my excruciating pain.  He basically said in his own fucked up way that I was a junkie for being on opiates to manage my fibromyalgia.  I lost my shit a little.. I started getting hot from head to toe, burning enough to tell him to get fucked.  I said to him.. 'How dare you ask me to come off something that gives me the little quality of life I have left' - 'Why would you do that?' Because he didn't know shit, I cannot take NSAIDS because of my Xarelto medication for my fucked up lungs.  He said, 'Oh that's a shame' - no shit dickhead.  He said is there anything we can do for you? I said yes, discharge me so I can get away from you.  He looked shocked but not, I don't think I was the first and I won't be the last to tell him he's a dickhead.  He wrote my letter, told the other lady opposite me the exact same thing, she was a junkie too.

Apart from that one empathetic doctor, and her getting on top of my pain for at least an hour, one nice nurse who cannulated me (wow, blood.. holy shit, a tonne of blood - someone get me a plug?) bitchy nurse who wouldn't get written up pain meds and wanted me left in agony 'they'll get to you soon OK?' - woah bitch, hold onto your hair.  I had a nice go at her too.. 

What an experience.  Of course my parents have done more for me that my husband since I got home Wednesday arvo, he hasn't really given one shit - narcissists are not empathetic so I wasn't expecting much.. 

Until next time, be kind. x 

Life after a pulmonary embolism..

So... Since the days of my PE (Pulmonary Embolism) on the 5th December, 2017 my life has changed dramatically.

I remember in a haze a mountain of doctors, dietitians, pharmacists, nurses - all preparing me to go home and heal after a 5 day long stay in the respiratory ward.  I was reminded by my doctor & head of respiratory that I was lucky to be alive as they had no idea where and what caused a sudden onset PE.

I went to my GP that morning of the 5th, it was a Tuesday.  Ironically I had cancelled my appointment for the Monday as I wasn't feeling well.  The first thing she did was check my BP, which 5-6 weeks prior it was a little elevated & I was medicated for it.  The next thing she asked is that did I have chest pain or was it hard to breathe.  I told her I was short of breath the last few days and she promptly put the oxygen reader on my finger and instead of seeing numbers 97-99 we saw an 84.  She told me that I wasn't going anywhere and that I was off to hospital and shall she call me an ambulance.  RIGHT.  Life changed in an instant.  I told her I had 3 children to organise and a husband to get home from work to take me to hospital (the kids went to mum & dads)

I remember on the way to the hospital and holding my husband's hand thinking is this the last car ride I'll have? What is wrong with me? Am I going to die? What will happen to my babies? So many thoughts to process but I felt so numb.

I was rushed through emergency and promptly had a cannula put in to draw blood & start fluids as I was dehydrated.  I was rushed through to have a CT scan, X-Ray & needed to go through a massive machine that 'lit up' & looked predominately at my lungs.  Within 2 hours I learnt my fate.  I had survived a PE (Pulmonary Embolism) and was extremely lucky to still be earth-side as I had around 8 clots sitting in both lungs.  Cue tears.  Cue fear.  Cue the unknown.  Cue respiratory ward, which was my home for the next 5 days.

Alone in a sterile room, no flowers allowed due to obvious reasons, I had a tv & whilst I couldn't sit in a chair upright until day 3, it was there to sit and watch the sunset.  I reflected on all the things I haven't done, WHY hadn't I done them?  What the fuck stopped me?  I survived this massive thing and reflection was somewhat calming.  I no longer wasted energy on the people that didn't give a fuck about me, I culled a lot of facebook 'friends' & just generally tried to get stronger each day.

With my husband having to take the week off work to look after the baby, they visited everyday - it was the happiest & saddest part of my day.  They normally stayed a little past visiting hours but because I was a top patient they didn't mind 😉

My husband would help me shower as I wasn't allowed to stand whilst washing because of possible fainting or worse.  Day by day I got a little better & although having to give myself 2 injections per day - it hurt (a lot) I didn't mind, hey, it was keeping me alive.

Day 5 (11th December) I was hoping that I'd get the 'ok' to head home to rest & recoup.  I had battled a serious fever throughout my stay and the doctors were concerned I may have had sepsis, so until my oxygen levels were steady on or above 96% & my temp went away - Monday was looking good.

Turns out I was good to go, well you know - right to go home & complete change of life itself.  I hugged my mum as we got to their place, we both burst into tears and I didn't want to let her go.  My eldest daughter (10) was crying and everyone was just emotional as they didn't think they'd see me again.

Apart from not being able to drive for 6 weeks, have a blood test every 2-3 days, take blood thinners, inject myself with anti clotting agents & get used to the fact I'll live with compromised lungs for the rest of my life - I was ALIVE.

Since June I have been given the all clear & placed on a preventative medication.  I cannot tell you how much I hated taking warfarin and what it did to my body, I'm glad (and hopeful) that I won't be on it anymore..

I have a lot to live for, I am trying to get healthy & eat properly (not just dinner) and exercise (fuck you fibro) slowly but surely I will get there.. It's a promise I've made to myself.

Be kind x