To be shit scared and ask what you’d do tonight

[RightYesButNo]

I really need some wisdom.

I’m sick. So fucking sick. So fucking sick of being sick also, but that’s not relevant at the moment.

I have a new treatment tomorrow. The intravenous version of it has given me aseptic meningitis (the really damn painful but not dangerous kind) three times (you would think the doctors would learn after the first or second time but desperate measures), so I can’t have it, and I really need it. So now they’re going to give me the subcutaneous version. I’m simultaneously terrified of: it not working when I REALLY need it to, something going wrong, the pain of getting it.

How do you not be scared in this situation? And if it was your last night before a treatment that could go wrong (just have a shit bad feeling about it, probably anxiety but I’m not generally anxious so I don’t know), what would you do?

I can’t go out as I’m having trouble breathing, which is why I need treatment, so what would you do at home? Only thing not an option is a dirty takeaway, as have to eat bland stuff pre-treatment.

I think you will be scared, so I think I would go for distraction technique. What sort of film / tv do you like? Have you got Netflix / prime? Maybe we can find you something?

Accept that you're allowed to be scared.

Are there any films you like? Things you like to do, even if it's just a warm bath?

A handhold for this evening and for tomorrow.

I’d sign up to Amazon Prime, order myself some nice things to come home to after the procedure and stream movies/box-sets tonight. You’ll get through this

Binge watch Peaky Blinders.

Is someone with you tonigh?

Tell us what kind of films and programmes you like, honestly watching something absorbing always does it for me. And can you eat something nice this evening?
I know it's not remotely the same but I had an infected tooth out today and I was dreading it - and it was fine, over before I knew. Bit sore now but such a relief to be on the other side. You'll be on the other side soon, just a few hours to get through.

Being scared is absolutely OK, it’s a normal thing to feel. It’s natural to be scared and I don’t think your going to stop feeling it

Online shopping?
A really trashy film?

Thank you so much, all, seriously. It’s hard not to think of the last times that I’ve had meningitis and even though it wasn’t dangerous, you can’t imagine the pain (maybe you can!!!). You feel like your head and neck will explode and you really will die, and it keeps being sore for the next week or so.

I know you’re so right about the distraction. I suspect it’s probably what will get me through. Unfortunately, a bath probably isn’t an option because my breathing just isn’t stable enough to move that much (it’s been short showers on a chair for a week now, blargh).

I like mysteries and things, not super gory ones, but things like the old Midsomer Murders, Marple, Lewis, Endeavor, Sherlock (not the last season ). I also liked some of the more light-hearted stuff like Psych. I have both Netflix and Prime. I do like adventures, too, where things blow up, when I want something trashy. I just finished the new Jack Ryan in Amazon and it was fun, even if it was very “pro-American.”

In your situation, I would go to bed asap to get tomorrow here sooner and out of the way.

Good luck

Love a Midsomer! Maybe watch one and then an early night?

Things I've watched recently and enjoyed - I LOVED endeavour more than anything else I've seen recently!
Manifest
Client list

Or I like watching daft stuff on YouTube like the voice teachers react to celeb singers. I fell down a wormhole though and ended up watching how to fold fitted sheets so that might send you off to sleep

I would accept that it's scary and it's ok to feel like that, allow myself to think about it and make sure I had everything prepped for tomorrow.
Then I'd make a conscious decision to relax and not think about it. I'd get a nice drink even of water and sit down or lie down with a blanket and watch TV, read or browse the internet.

You are allowed to be scared. And of the shit hits the fan you have got through it before and you will again.

Tv recommendations - Vera, Castle, Rizzoli and Isles, Elementary.

Is it igg? Everyone I know on subcut have never had the problems those on ivig have

Bletchley Circle on Netflix fits your bill of non-gory mystery.

Best of luck for tomorrow, I really hope it makes you feel better and not worse.

Wishing you all the very best for tomorrow OP ❤️ x

Sub cut is less risky than iv.

It's really ok to be scared. I'm always scared before being given a new biologic med but you'll have medical staff there.

Have you got the calm app? If not then you can get 14 day free trial, it's really good and literally, very calming.

Sounds shit, I’m sorry

Any chance the can give you anti anxiety meds intravenously before the treatment? I had problems with treatment I had and they found that giving me an anti anxiety through the drip before the procedure works wonders - and meant I slept through the 8 hours of treatment too which was a bonus! Not sure if possible for you though.

As for tonight, I am currently binge watching Firefly (Amazon) - an oldie but a goodie! If you like Rizzoli and Isles, Body of Proof is good too.

Those saying have an early night, it’s a bit of a conundrum because my appointment isn't until 1pm. So now I’m hoping if maybe I stay up late watching something, my body will force me to have a lie-in and I won’t have as many hours to think about it in the morning. Thank you for these recommendations! Definitely going to try some tonight and writing them ALL down (even the YouTube idea!) for the coming days since I’ll still be in bed a bit until the treatment starts working, if it works. Also, you’re all brilliant because I just realized I should probably download a few episodes for DURING treatment (it takes a few hours, I have to do the first time at the hospital, and then I have to stay longer since I’m a risk) to watch, so I’ll definitely have something now.

@DaisyDreaming Yes! It’s subcutaneous IGg. Before, they’ve kept trying different brands, different infusion speeds, since I really need it for my disease (generalized myasthenia gravis, now causing breathing weakness) but I still got aseptic meningitis every time when it was IVIG.

@Chilver I’ve never actually wanted anti-anxiety meds until now! But since my condition is caused by muscle weakness, I can’t have any meds that “relax” me, unless I’m intubated. I’m already on painkillers from my doctor for the pain, which are risky, and they’re sort of the absolute limit.

A few people now mentioned Rizzoli and Isles which I haven’t actually seen so definitely putting it on the list.

Have you watched the Agatha raisin programmes on sky? They're nice and lighthearted.

Order some nice splurgy things to arrive after, things that feel a bit naughty and self indulgent.

Good luck x

I was going to say Agatha Raisin. Also love Jonathan Creek. Not watched that for ages so don't know where it's available.

Ooh! Definitely Rizzoli and Isles, and Agatha Raisin. Both good. There's the Agatha Raisin on audio books as well.

aw..I dont understand any of the clinicle things in that ,but want you to know im thinking off you all the same.best wishes x

Another vote for manifest here. I properly binge watched it over two evenings. It's absolutely perfect as you get so caught up in what's happening.