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Stop the world, I want to get off

71 replies

amber32002 · 14/02/2009 07:19

I remember that as one of the phrases my grandma used to use. Seems very appropriate for a week where I've had to rush back and forth to hospital for dh who's had a brain bleed and is undergoing all sorts of tests. As people might remember, I'm ASD and so's he, and of course hospitals are a sensory nightmare for both of us anyway. So much for routine, my needs, his needs or anything else. Just sort of surviving at the moment. It made me wonder how much training any hospital has in caring for those with an ASD. They've been good, but it's like trying to recover in the midst of a warzone of noise, smells, people doing unexpected and fairly unexplained tests etc. We had to be really firm with the consultant and say "no, he can't handle that", at one stage which was respected.

I'm so tired....

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amber32002 · 16/02/2009 19:13

Yay for patient liaison person! When I got to the hospital he was back in his own room again! But the ward sister was a bit 'off' with me. She said we should have asked the staff on the ward. I explained we had, several times. She didn't seem to want to listen, or to me explaining that me as a person with an ASD advocating for my dh with an ASD, when I was that stressed out and overloaded, wasn't working very well. People are very illogical sometimes.

Saw a very nice young doctor (who looked a bit like Hugh Grant) who told us that if he can make it to the weekend, his chances are really good.

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alfiemama · 16/02/2009 20:16

Thinking of you and you family for tommorow Amber, everything crossed, hope the tests go ok.

feelingbetter · 16/02/2009 20:17

It isn't long till the weekend. It's already Tuesday really (Monday is over), then Wednesday - peak of the week, Thursday, and FRIDAY is officially the start of the weekend.
Each day must seem like an eternity for you, but things seem promising.
Keep strong, you've done amazingly well.
I know hugs are not nice for you, so have some chocolate fudge cake in lieu.
Thinking very positive thoughts for you all xx

ilovepeppapig · 16/02/2009 20:27

thinking of you amber.

tiredoftherain · 16/02/2009 20:49

thinking of you for tomorrow's tests, will check back tomorrow to see if you have any news.

SammyK · 16/02/2009 21:21

Just seen this Amber, hope your DH gets a bit more rest now he is in a quieter spot. Will send positive vibes and be thinking of you both. x

Widemouthfrog · 16/02/2009 21:28

I've not been around so only I've just seen this. My thoughts are with you and your DH.
Take care.

sphil · 16/02/2009 22:07

So sorry to hear this Amber - thinking of you and hoping your DH is better. Having spent two periods of time with DS2 in hospital recently I know what a sensory nightmare they are - and DS2 isn't even that sensitive!

Tclanger · 16/02/2009 23:19

This reply has been deleted

Message withdrawn at poster's request.

amber32002 · 17/02/2009 07:28

Tests now today, allegedly...hoping and praying it'll be good news...

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TotalChaos · 17/02/2009 08:40

best wishes for the tests today, thinking of you both.

busybeingmum · 17/02/2009 09:12

This reply has been deleted

Message withdrawn

TallulahToo · 17/02/2009 17:08

Hi Amber - How was it today? Are you okay?

misscutandstick · 17/02/2009 18:15
amber32002 · 17/02/2009 18:51

Gah! No test today. No staff for it. May now be tomorrow, or Friday (but not Thursday, it seems). How stressful can any week be for two people with an ASD...
Must...stay...calm...and cope with all the driving etc.

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BriocheDoree · 17/02/2009 19:06

Sending virtual tea and biscuits and large comfy pillow!

Brio
x

HelensMelons · 17/02/2009 19:09

How totally frustrating for you.

Be kind to yourself, tea, chocolate, rubbish book in bed or tele if you have the time!

I will keep my fingers crossed for things going ahead either tomorrow or friday.

Keep us posted xxx

Seuss · 17/02/2009 20:48

Hope they can sort the tests tomorrow, glad to hear your DH is in his own room at least.

Thinking of you both.

RaggedRobin · 17/02/2009 21:09

just read this thread. thinking of you both. keep strong!

5inthebed · 17/02/2009 21:20

Amber, sorry they are delaying the tests. Must be very hard for you both. How is your ds coping with it?

Sending you a virtual hug, hope all is well as can be

magso · 17/02/2009 21:24

Sending best wishes and thinking of you.

alfiemama · 17/02/2009 21:25

Oh god Amber, sorry your having to go through this. Hope you get better news soon. x

amber32002 · 18/02/2009 07:07

DS (the 16 yr old rugby player) is sort of coping, but was quite low yesterday. He's got big exams and of course this has wrecked his concentration and I've got almost no time to help him with anything at the moment either. We've told the school. Not sure it's helping that it's half term - too much time to think instead of doing lots of things to take his mind off.

I'm really dreading today

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TotalChaos · 18/02/2009 08:30

oh amber sorry that "the system" is dragging things out so much, hope he gets the tests over with soon.

amber32002 · 18/02/2009 19:37

Praise be...he's had all the tests and they say he's one of the very, very lucky ones who are going to be ok. Long recovery, but he should be fine.

Thank you all SO much for helping to keep me going through all of this

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