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Handhold, in HDU with respiratory failure and terrified

967 replies

Seafour · 22/11/2018 04:28

Just that, is anyone awake?

OP posts:
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LadyDeadpool · 25/11/2018 14:28

Seafour Wow, you've actually brought tears to my eyes I can't comprehend how someone can be so strong after going through so much. You are absolutely amazing I don't think I've ever met anyone with so much resilience.
I've crumbled so often in the past at the smallest things but you, you are taking my breath away with the dignity and strength you're showing after having gone through so much. I wish you peace and joy in the future because if anyone deserves it, it's you.

Seafour · 25/11/2018 14:30

Cup of tea and mince pie break

But I missed the really important bit, when I was staying with dd and it looked to the world as if our marriage was over, my former friends all contacted dh. He had some candid conversations with them about why they weren't friends with me and it all boiled down to me not making enough effort, not texting them, not going for days out, weekends away etc.

I've read the messages they sent him when they thought I wasn't coming back and they were quite prepared to have him back in the fold and there was no room for me.

It makes me angry now that it still hurts me, I was a mug always the person to organise stuff, book tickets, sort hotel bookings and ours was the house where everyone congregated for social events. I was used, they weren't real friends but I still miss them.

OP posts:
LadyDeadpool · 25/11/2018 14:34

Regarding your so called friends - you're worth so much more than that. They jumped ship when you needed them to be your friends and you deserve better than that.
People that can't understand things change when something catastrophic happens and can't put away their selfish thinking to take up the weight for once in a fair and equal way, who can't be your friends when you need them most just aren't worth the pain.
You deserve some light in your life after all your pain, something to brighten your world when you've suffered so much. I can only hope it arrives for you soon. It seems even in your darkest days you were strong but sometimes it's ok to break and let someone else be strong.

BigApple11 · 25/11/2018 14:53

Seafour, thank you for your honesty and bravery. Lots of love x

BlowPoke · 25/11/2018 14:57

I can only echo what others have said. You have come through so much and I am awed by your bravery and honesty. I am following your story closely and I will keep reading until you decide to stop writing. Thank you for sharing Flowers

Seafour · 25/11/2018 15:17

I'm taking a pity break, my brave little rabbit has just died - if you've read the whole story he is one of the pair I brought back from France ten years ago, his sister died three weeks ago. They have had such a long and happy life but I'm really sad. I will miss them so much.

Our fur family now consists of a dog, cat, giant rabbit and tortoise

OP posts:
WitchDancer · 25/11/2018 15:23

I don't know what I want to say, just I do understand the heartbreak of loosing friends to a lifelong illness. I don't think anyone who hasn't got something that impacts on your life forever would be able to understand. You are an incredible person, and I am truly inspired by you.

I'm sorry for the loss of your bunny, run free on rainbow bridge little one 🌈

Seafour · 25/11/2018 15:27

Rest in peace buddies, never happier than when they were tucked down my ample cleavage.

Handhold, in HDU with respiratory failure and terrified
OP posts:
bexcee · 25/11/2018 16:39

Aw so sorry to hear of your little bunny buddies. You gave them a long and happy life filled with love and cuddles.

SixButterflies · 25/11/2018 17:12

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Seafour · 25/11/2018 17:51

Butterflies you couldn't make this story up unless you'd swallowed a medical text book every day for a year.

People from low carb boot camp know I'm real, they've seen photos

OP posts:
DeadCertain · 25/11/2018 17:52

I have just read the whole thread; no words can really express how amazing I think you are Seafour - a remarkable person. You write so eloquently and engagingly and without a trace of self indulgence or pity.

SixButterflies · 25/11/2018 17:56

I hope I didn't insult you. I was in my clumsy way trying to express how rapt I am.

perhapstomorrow · 25/11/2018 18:07

I'm so sorry about your bunnies. 😥

redastherose · 25/11/2018 18:09

Please keep posting, your strength and dignity shines through. WRT your so called friends, true friends would have been there for you no matter what.

StartingGrid · 25/11/2018 18:12

Binky free bunnies Flowers

TinklyLittleLaugh · 25/11/2018 18:16

Your story really resonates with me Seafour. Progressive neurological condition here, and I feel like I'm on the brink of losing my best friends.

readyplayer · 25/11/2018 18:47

Rest in peace, bunnies 

@Seafour I hope that writing this all down is cathartic for you. Thanks

Bubblysqueak · 25/11/2018 19:07

Flowers I am so sorry for your loss big hugs.
I've just read the entire thread, the way you write is captivating, you have had to cope with so much but still have your humour. Really hope you feel better soon.

Seafour · 25/11/2018 19:43

I've just lost the next instalment because my internet failed as I was trying to post.

I will try again later.

Thank you all so much, for listening, for caring, for your time it means so much to me, more than you realise.

It's also been a huge confidence boost because of all the lovely comments about my writing. I had a very poor education, missed lots of school and was excluded at 14 and didn't go back.

I worked for a client once who knew I had no formal qualifications and constantly rejected stuff that I'd written. It destroyed my self belief and you lot are giving it back in spades.

OP posts:
HotChocolateWeather · 25/11/2018 20:32

OP you write with dignity and grace. Your fight is inspiring. There's some ninjas with onions around here as I read this. I'm glad you are home and I hope you don't have to wait too long for your surgery.

Seafour · 25/11/2018 20:42

Sleep latency testing was frustrating they didn't listen, they invalidated some of there own results and couldn't understand why I couldn't get out of bed, into the car for them to get an early morning blood gas. It takes as least two hours to get me up and out on a good day.

I had a routine follow up with spinal and I had developed a worrying curve above my fixator and a forward bend that was impinging further on my lungs. Volume recruitment was now three hourly day and night or I slipped into a semi conscious carbon dioxide world of nightmares. I was to have a two part surgery, side curve fixed with internal cages then my rods removed, bones broken and reshaped a week later.

We went to NZ, it was joyful and we spent precious time with our kiwi dgds, bought them a new pony, took them on a road trip and all sobbed at the airport when it was time to go.

I was so ill with jet lag when we got home, I slept and vomited for two weeks and then it was preparing for the op, it was cancelled twice and took place in. March.

ICU for a few days, HDU for a few more then onto the spinal ward, my least favourite place on Earth.

I'd had a meeting with the ward manager before I went in, volume recruitment training offered, detailed information about caring for me. I did everything to make it easy for them.

For legal reasons I can't go into details of the mistakes made, but they were plentiful and mind boggling.

My second surgery couldn't go ahead because I'd become oxygen dependant. Respiratory doctors got involved and after numerous blood gas samples were taken I finally got answers.

A very pompous professor of respiratory medicine rocked up next to my bed and said "you have a paralysed diaphragm"

The conversation went:

Sea: I beg your pardon
Prof: your diaphragm is paralysed
Sea: and that means
Prof: well it's why you can't breathe effectively and are retaining toxic levels of carbon dioxide
Sea: did it happen during surgery
Prof: no, it's clearly been that way since 2007 and we can't understand how you've survived.
Sea: I beg your pardon
Prof: when you broke your neck the damage to your spinal cord paralysed your diaphragm. It's why you didn't drown, you simply stopped breathing. You can't breathe lying down, the medical term is orthopnea, I'm surprised nobody picked up on it.
Sea: you're telling me that for ten years I've lived with a life threatening injury that nobody noticed.
Prof: well it's not normally something you survive without ventilation so nobody would have been looking for it, I've never seen anyone survive and be able to breathe effectively.
Sea: what the fuck! What the actual fuck!!!!!! So what happens now
Prof: you need to be moved to HDU, your very interesting. There isn't a bed right now but we will move you as soon as we can.

Off he trotted

OP posts:
shoofly · 25/11/2018 21:12

You write beautifully and are an absolutely kick ass person! Sorry to hear about the bunny (love the pic) am in awe of your strength. Need to give myself a kick up the ass x

NancyWho · 25/11/2018 21:23

Even though you asked for a handhold on Thursday and I'm late to the thread I'm reading and hand holding if you want it OP.

As PPs have said; your writing style is lovely.
You've really had a shitty time but you do kick ass.
I'm sorry about your bunnies Thanks

Andro · 25/11/2018 21:24

It's also been a huge confidence boost because of all the lovely comments about my writing. I had a very poor education, missed lots of school and was excluded at 14 and didn't go back.

ShockShockShockShockShockShockShockShock

With the way you write, it's a whole lot easier to picture you sat behind a desk, in a suit and with a PA of the administrative kind than ^^ that description.

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