Hospital Hell

Post Reply New Topic

I've been quite ill with what I thought was just a bit of a chest infection. After a couple of weeks of this and 7 days of antibiotics not helping I was having great difficulty breathing and went back to the GP who sent me into the hospital as my blood-oxygen level way extremely low.

I was assuming I would get a couple of tests and maybe be out and back home after a couple of hours. Instead, I was admitted and connected up to oxygen, IV drips, tonnes of wired monitors etc. and what followed was probably the worst 8 days of my life.

It turns out I was a lot more ill than I had realised and the doctors had some trouble understanding exactly what was causing it. It turned out to actually be quite serious and I am lucky to be alive and back home although recovery/treatment is going to take some months yet.

As an extra little bonus, it turns out that my veins are not particularly co-operative when it comes to having a drip in and, over the 8 days I had 12 separate IV lines inserted as each one stopped working or they tried a new one and it didn't work. I'm not so good with needles but can usually just grit my teeth and get it over with if its one or two quick injections or blood-takings. I think, with the IV lines and the 20-30 other bloods, jabs etc, I went well past my limit of what I can tolerate and found myself, despite wanting to not fuss and just let them do their job, having full blown anxiety attacks and the like at various times through all this.

I understand that few people enjoy needles but I wonder if there is am autistic component coming into play in my case. I have the whole touch aversion thing but it's usually something that I can disguise. However, someone grabbing your arm and inserting tubes inside feels like the most intense and violating kind of 'touch' imaginable and I am sure that this is a large part of why I had so much trouble with that aspect of my treatment.

What are other people's thoughts on this?

Si

were they not made aware of being autistic?

the fact am severely autistic and intelectualy disabled is on the hospital computer database so it will be flagged up in any hospital that go into plus have got a document called a hospital passport-which is this pretty much the same one as this one;
http://www.uhmb.nhs.uk/patients-and-vis ... -passport/
and support staff and the local intelectual disability team have given every detail on it about disabilities,complex needs,behaviors,what am like being in hospital ;what things do not like,what things can tolerate better, its a very good document as long as its given to the hospital staff upon arrival and woud recomment downloading it from that page and filling it in or asking a professional to do it if their input is needed.

can totaly relate to the experience have had, as am in hospital more than the average person [was in A&E yesterday after having had status epilepticus],they can never find a vein as theyre all overused or collapsed,its like have got junkies arms,have to be restrained if they dont get it right the first time because cannot tolerate the weird feeling of the needle being moved around inside flesh.
they have had to often move canula [the needle] sites to but not before the medications they were putting in didnt seriously burn and feel like was being torn apart from the inside.


next time,when start getting any symptoms,go to the GP as soon as they show up as it will save all this trouble,try to become more self aware of what the body is saying,am a hypocrite saying that as am totaly blind on mine and relie on others to interpret it for self.
hope recover soon si.

they always have me on something during hospital stuff, so i'm sleepy and dazed and don't really feel anything going on. i thought they did that with everyone. but also they know if they don't loop me i'll fight them and have meltdowns and stuff. i'm pretty sure they have me on bensodizapine or something like that.

Glad you made it. I can sympathise with the vein thing because they had the same trouble with me, they ended up doing a minor operation on my left arm and tapping a tube into a really big vein that would never close up.This was then used to inject anything they wanted and for taking samples. I still have the scar.

The injection things are easy to cope with:

1) If you're worried about it DON'T look.

2) Lay back and close your eyes.

3) Relax, I mean REALLY RELAX, make your whole body go limp then start breathing slowly and deeply. You then concentrate on the breathing rather than the needle and you'll be fine.

Hyper touch sensitivities common with Autism make getting constantly pricked with needles hell. A hospital setting could trigger overload in all the senses. Transitions/change are very difficult for many on the spectrum. Finding out you have a serious medical condition, plus the different hospital routines is a huge transition.

I hope your recovery is faster then expected.