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Just need a distraction.

55 replies

oohfuckinghell · 27/09/2022 22:20

I'll firstly say that this isn't an AIBU. I've made a couple of other posts under other users but I'm here merely for traffic as I'm having a fucking shit time.

I was admitted to hospital 19 days ago as I have started having black outs and heart palps / chest pains. They put it down to not enough fluids and being dehydrated but I was sent home and I've been eating and drinking a lot more. (Reason I struggle with eating is I've had multiple abdo surgery and chemo that's wrecked my insides due to an aggressive type of cancer) that was when I was 23/24. Im 28 now.
So whenever I vomit or feel rough I just put it down to that. Those blackouts never stopped and have turned into full blown seizures. They are fucking terrifying. I am AFAIK no evidence of tumours so it's looking like the seizures aren't linked to the cancer diagnosis. I can only hope and pray with everything I've got.

I had a CT this morning after a horrendous seizure and I've cut my mouth to bits. Something has come back on my CT which is looking like a stroke / bleed on the brain. They don't know to what extent of even for sure if it's this but my epilepsy tests have come back as normal (so far..) so tomorrow I'm having a brain MRI and also lumber puncture. I'm utterly shitting myself I am absolutely terrified. My mum had a stroke when she was 34 but it was injury related. But I'm sat here in tears, 28 years old, my baby is at home with DH and I'm so scared. I've been taken to one of the top nuero hospitals in the U.K. and they are being utterly brilliant.

I'm just terrified. From my Fitbit I've had 8 hours and 14 minutes sleep (this isn't too accurate though as I think the seizures are messing it up) so I've taken it off as it's doing my head in. They are giving me oramorph for my head pain and a sleeping tablet beginning with Z to help me sleep but I just cannot switch off. I'm so scared I won't see my little girl grow up. She is my utter world, our miracle IVF baby after my cancer. I was incredibly lucky to come out the other side of that too, I was on life support for a while after. But that's another story.

I'm scared. I miss my baby. I miss my husband. I am utterly exhausted beyond means and I just cannot shut down but until they know exactly what they're dealing with they can't really give me anymore medication.

So there's my current life story. Just seeing if anyones awake and fancies keeping me company. I'm scared about the lumber puncture as from what I've heard they are miserable. But I just want to get fixed up and go home. I am just so sad.

Anyone awake just for a chin wag with a stranger on the internet? (I'm sorry this is so woe is me, it's so unlike me. I've never been so sad in my life. An hour at a time I guess)

Thank you for reading if you made it this far x

OP posts:
Defiantlynot41 · 27/09/2022 23:30

Comfort food

Shepherds/cottage pie. Thinking of making a venison version next weekend, weirdly always nicer the day after it's made.

Cake - something easy like flapjacks or scones. This is a good recipe, quick and not too unhealthy For scones, my friend swears by Mary Berry but I like these

Something slow cooked like lamb tagine or beef bourguignon now the weather is colder

Jacket potatoes with beans and cheese. I'm diabetic and this combo sends my sugars through the roof but I love it! A very very rare treat.

What's your favourite?

solania · 27/09/2022 23:33

oohfuckinghell · 27/09/2022 23:20

What's everyone's favourite thing to cook or bake? I love cooking and can't wait to cook some good fresh meals when I'm home. (Or comfort food)

What's all your go to comfort foods that you like to make?

Not sure I have a favourite but today I baked some carrot cupcakes and they are so good! Even DS scoffed his despite claiming not to like carrots or sultanas 😆

I love your bedtime childhood stories thing. I’ve been doing similar with DS - we have a lovely book of world folktales and I have a bible stories one which he’s now growing into. It is so nice to dip into different places and cultures with them.

Sending you light and holding you all in prayer xx

BetsyBigNose · 27/09/2022 23:40

Sorry to hear you're having such a crappy time - I empathise, having had lots of hospital stays myself, often for several months at a time. I always really miss my DDs and DH, and really treasure the time when they visit.

When it comes to hospital food, the shepherd's/cottage pie is always my "favourite", and I always order either a tuna mayo sandwich or baked potato when they're on the menu - but I take a little container full of sachets of salt, pepper, mayo etc. with me whenever I'm admitted, otherwise everything can taste pretty bland, as I'm sure you know!

I've watched the Dahmer thing, it was disturbing, but also really good! It led me to 'Mindhunter', which there are 2 seasons of, and I really enjoyed that, so a good bet if you like serial killer type stuff! I've also watched the dramatisation of the Thai football team who were trapped in a cave, on Netflix, which was quite interesting (although a little slow in places, I might have preferred a documentary). Another vote for The Capture - I loved season 1, but haven't seen any of the second as yet. I clearly watch a lot of TV, but I am still pretty poorly, so am at home a lot, not able to do too much.

I hope you have some good news soon, sending all good thoughts to you and your family.Flowers

FairyLightAddict · 27/09/2022 23:54

Poor you. Terrible time. I've just finished Am I being unreasonable on iplayer. Dark comedy and excellent. When I'm stressed I rewatch Gavin and Stacy as I love it.

LittleGreyFluffyCat · 28/09/2022 00:06

You're in the right place and it's all going to be fine. Definitely distract yourself with chats on here, good programmes, and planning fun things to do when you're feeling better. If your mind wanders off towards worry, just coax it gently back to thinking about other (nice, positive) things.

My mum (a stroke survivor), does this meditation type thing where she says in her mind something like 'may I be well, may I be happy, may I be healthy' and it's really helped her to stay calm on lots of hospital visits and procedures. I tried Googling it and found a few variations on it, plus online meditations. Might not be your thing, but could be worth a try!

Summerholidays2022 · 28/09/2022 00:14

Hope you’re getting some sleep now?
. Good luck with everything tomorrow and I hope you’re back home with your family soon. You sound so strong.

BecauseICan22 · 28/09/2022 01:20

Hey OP,

You're a proper Warrior you know. Cancer, IVF, working the tills at Waitrose! =)

I know you're exhausted, beyond fatigued with fear and uncertainty and you just want your life back. It's ok to feel as you do but remember within that how strong and kind you are. How you can show compassion to others (you mentioning other patients and their plight) even when you're on your knees and how resilient you are. You're still here aren't you? Take it a day at a time. I'm sending love and courage your way.

mowly77 · 28/09/2022 01:39

Hi Op! Hospital is utter crap shite isn’t it. And yes so hard to sleep in - get DH to bring you some earplugs if he hasn’t already. I’m in similar need for distraction & some of those suggestions sound really good! I really enjoyed the comedies Mo, about a Palestinian - American in Texas & Dave, a white suburban Jewish rapper (think both on Netflix or iPlayer).

Keep us updated next time you’re awake. MN is an unending distraction (obviously … it’s the small hours and I can’t sleep though!)

oohfuckinghell · 28/09/2022 07:53

Well how wrong was I about the zopiclone!
It must've knocked me out I just don't remember drifting off.

They are talking about starting Keppra today an epilepsy drug. I'm trying not to read much about it and just going with what they say.

I've got a list of suggestions of things to watch. I'll literally watch anything so I'll get through it. DH has bought in some wool and cardboard rings so I'm making pompoms (I put little ones on wrapped presents at Christmas instead of tags) so that'll keep me busy.

I also bloody love hospital porridge with a tonne of sugar on its so nice! Todays lunch menu is veggie chilli and dinner jacket pot so all good on that front.

What's everyone's plans for today? Guessing mainly working as a weekday. Loosing track of days has time.

Thank you all so much for chatting to me. Sometimes it helps much more to offload to strangers.

OP posts:
WandaWomblesaurus · 28/09/2022 07:56

How are you feeling this morning? @oohfuckinghell?
What was breakfast like?

WandaWomblesaurus · 28/09/2022 08:15

Definitely don't read up on the meds etc - just let your mind drift into a bit of escapism.
I'm writing an essay on stress at the moment and distraction is a good thing. Zoning into something you like will help especially if it's a series you can escape into.

oohfuckinghell · 28/09/2022 08:21

WandaWomblesaurus · 28/09/2022 07:56

How are you feeling this morning? @oohfuckinghell?
What was breakfast like?

I had porridge for breakfast and it's actually really good! With a bit of brown sugar on top.

I'm so used to cannulas and needles and they really don't bother me but Christ! Arterial gas bloods are miserable!

OP posts:
nannybeach · 28/09/2022 08:28

OMG, bless you 💕,so unfair. I was nursing 40 plus years, absolutely love hospital porridge, nothing like it. I used to tick it when I was a patient, even when I had older DKs, 40s,50s now I ticked for it,was told I was the only one,so it never arrived. ABG is bloody painful. I have crap veins, they see any needles,they are gone. Fingers crossed for you!

BecauseICan22 · 28/09/2022 08:34

Good to hear from you OP =)

What are your fellow ward sharers like? I've spent time in hospital this month, pregnancy loss, and my fellow wardies were a hoot! There was an older lady that kept hiding everyone else's food, literally she'd just walk over, take whatever food item and then go hide it. Her hiding place was her windowsill!

We had another lady who was a champion farter!!! I've never heard anything like it.

The final one was a really unhappy lady who did nothing but complain and upset the staff. We worked out she was just lonely and feeling sad about it. My oldest daughter made her a get well soon card to make her smile and it worked. 😊 She was kinder to the staff after that.

Just need a distraction.
MenaiMna · 28/09/2022 09:03

For reading time with your daughter she's the perfect age to introduce to Sandra Boynton's books. For a taster of her work she has a channel on YouTube. You will giggle loads together. Hope you are a bit better today.

Summerholidays2022 · 28/09/2022 11:28

I love those home made pom-poms.

WandaWomblesaurus · 28/09/2022 15:06

I have those types of veins too and was told they were "sneaky" by a nurse once! I don't know if you have Sky, @oohfuckinghell but that Boris series is on it now with Kenneth Branagh in and it looks fascinating. The Crown in Netflix is quite gripping.
30 Rock is very funny and comforting and ridiculous if you need escapism.
I've been enjoying the new Lord of the Rings inspired series too for the elven hair.
Was the lunch manageable?

WandaWomblesaurus · 28/09/2022 15:07

Summerholidays2022 · 28/09/2022 11:28

I love those home made pom-poms.

There's a Pom Pom puppy book that's so cute!

oohfuckinghell · 29/09/2022 09:15

Morning all
Sorry for the lack of replies I've been a bit out of it.
They are pretty curtain it's a bleed on the brain but I'm waiting results today to confirm. They haven't said what happens after that. I've spoken to the consultant today as I've been having seizures - in a way I'm sort of hoping it is a bleed on the brain. As he is sending information to the GP (rightly so) so they can inform the DVLA once I've got a firm diagnosis / cause. He said that there might be a chance the DVLA may let me keep driving if the seizures are proved provoked / caused by something that can be completely eliminated. So a brain bleed is the lesser of two evils at the moment. But there are only a few exemptions so don't get my hopes up.

Obviously if it's epilepsy they said I'll have to most likely need to surrender my license and from what I've read it's 12 months since the last seizure then you can drive?
It's going to make things so difficult as I have to travel for work, semi rural and i just hate the thought of most of my independence taken away. But we will wait and see - but I know if I can't drive and don't meet the threshold, it's vitally important I tell DVLA as I read some awful story about a guy who drove and had a seizure. As well as invalidating your insurance.

All up in the air and im overthinking everything at the mo. Lumber puncture today hopefully.

Side note I've started the Jeffrey dahmer my goodness I don't think I can finish it!!!

PS - Jesus zopiclone knocks you bandy. In a nice way!

Made a few mini pom-poms for Christmas. Going to attempt (badly) at making DD a hat. I've ordered a knitting started kit.

How is everyone? Is the weather getting colder now? I haven't had fresh air in a week and have no window. I'd do anything to inhale a damp misty morning!

OP posts:
oohfuckinghell · 29/09/2022 09:17

MenaiMna · 28/09/2022 09:03

For reading time with your daughter she's the perfect age to introduce to Sandra Boynton's books. For a taster of her work she has a channel on YouTube. You will giggle loads together. Hope you are a bit better today.

Oh thank you!
DH is putting up a proper book shelf for her this weekend and a chair in her room so we can read to her a bit more comfortably (I sit on the floor next to the cot) and we need a few more books to fill the shelf. Will check this out thank you!

OP posts:
WandaWomblesaurus · 29/09/2022 10:37

Don't worry about the driving for now. Look at these Pom Pom puppies! Pom-Pom Puppies (Klutz)

And a video about PomPom kittens!
Pumpkinpatchlookinggood · 29/09/2022 10:55

It's my ddog's birthday today!
She is now 9!
A ddoggy picture for you op!
Ds 8 declared last night she looks like an old squirrel!!

Just need a distraction.

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LeakyTapTap · 29/09/2022 10:55

Derry girls is brilliant and (I think) free on the channel 4 app. If you have access to prime video, I highly recommend Leverage/Leverage Redemption, Justified and Third Watch.

Hope you get some good news soon ❤️😊

Pumpkinpatchlookinggood · 29/09/2022 10:57

A smiling one!

Just need a distraction.
WandaWomblesaurus · 29/09/2022 11:06

First cloned wolf is born via a beagle! A cloned wolf! Sometimes reading science things can be distracting. My friend swears by watching Brian Cox and cooking shows when she is dealing with her PTSD.

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