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Moose here, Not SEN children but could someone please advise me - epilepsy(997 Posts)
Well my weekend away was disastrous in many ways, but the most significant one was spending the whole of today in the Acute Medical Ward of the hospital after having what is believed to be two fits last night. (Meanwhile my poor old Mum was coping dd recovering from a vomiting bug and ds2 coming down with dd's bug really badly and even throwing up in his sleep over and over - so she had to sit up all night with the poor mite. )
As for the weekend away, I didn't even make it to the meal. 6.30 pm, ordered my meal, felt a bit odd, realised it was neurological and dh took me back to our room - which was in the building next door. Went to bed and after a while felt well enough to think I was just going to sleep and would probably feel better later and perhaps join the guys for a drink before the end of the night. So sent dh back to join our friends.
Woke up an hour later felt odd and disorientated. Went to the bathroom, sat on the loo, felt odd and then woke up under the toilet, head and feet the wrong way to have just fallen off/fainted. When I came round I was aware of a sort of growling noise, and then a pain in my head. I realised when I came out of it that the pain was my head repeatedly bashing the underside of the wall hung toilet bowl.
Lay there for a few minutes until I felt I could move, got up wobbly and sat on the loo, then wham - woke up under the sink on the other side of the room - it was a really big bathroom, so again too far away to have just fallen.
There was no warning, although I did feel really strange. No dizziness and I didn't feel link I was fainting - which has happened to me a lot over the years and I would recognise that "uh-oh, here I go, slidey feeling". It was literally just, one minute I was sitting on the loo, the next I was under it with a head covered in lumps - the worst one being my left eye socket. Fortunately it didn't develop into a full on black-eye, just a shadowy bruise that can be mistaken for a shadow - can't imagine having to walk into school tomorrow with a black-eye.
I also ache all over today and seem to have wrenched my shoulder - although I can't imagine how.
So there I was, locked into our suite on my own feeling very scared and shaky, with dh at a gig in a separate building. Managed to crawl back to the bedroom and grab my phone and by a miracle got pretty much the only decent mobile signal I had all day to send a text that read He L p.
Dh is now back in my good books after coming thundering through the pouring shropshire rain and up three flights of stairs to rescue me. He had been drinking so couldn't drive (not that we knew where the hospital was) and all I wanted to do was sleep and wouldn't let him call an ambulance, so he insisted on checking my pupil reflexes for concussion, before sitting with me until I fell asleep.
Sooo, my question is can you be aware you are having or rather coming out of a fit, or would you be completely oblivious to it? I have always thought you have absolutely no idea what's going on and because I was on my own, no-one else saw what happened.
The doctor I eventually saw at the hospital felt it was suspicious enough for them to want to keep me in and run some tests tomorrow, but I refused as ds1 was already in a state, having expected us back at 4 pm and Mum wanted him to sleep over there, which would have screwed the whole week up for him due to the routine change.
Most of the standard neuro proddy pokey tests they did today were normal, but I had a positive Babinski's reflex in my left foot (the one with Complex Regional Pain) and I have felt like I have a really bad hangover all day - which is rather unfair considering I didn't get a chance to drink. In the end they agreed to discharge with an urgent referral for outpatient EEG and yet another MRI, plus a letter informing my neurologist.
I really want to believe I just fainted, but know it didn't feel like that and I to be honest I get upset and frightened just thinking about how it felt at the time. My friends want to rebook in January for a 40th birthday, but I can't bear the thought of going back there.
And I've had the idiot partner asking me "when are you going to realise you can't cope with 4 DC's?"
Mostly because he has looked at DLA rates and is seeing pound signs.
He wouldn't be able to stay awake for 72 hours on just 2-3 hrs sleep a night like I have to - even when he's here 'helping' he's asleep by 10pm - who would look after DS3 when he wakes up at 1am and is awake solidly till 10am?!
He's now saying that he shouldn't have to pay maintenance if I get DLA for DS3
twatbag, as I will have more money than him so he would need it more.
We are not living together, and are only 'tenuously' trying again after almost 2 years apart.
On top of the sleep deprivation, it's too much to have him threatening to take the DC's away.
I DID get so pissed off today that I pointed out that he wouldn't get custody by using my disabilities against me, as that is against the equality act.
He then backtracked...saying that's not what he meant etc.
Truth is, he's got autism, he has MASSIVE anxieties surrounding cancer since his auntie died 20 years ago of bowel cancer, and he's approaching a breakdown because of my diagnosis.
So much as he is being an arse, I can't hold it against him, as it's not his fault this time!
Which makes it worse for me, because I have to be strong for him, because if I fall to pieces then there is nobody else holding things together because if I fall apart, he will.
It's so flipping difficult having to be strong on the outside all the time, when really you are a ball of confusion, stress and worry, and maybe, just maybe, for once in your fucking life, you NEED someone else to carry YOU, instead of YOU carrying everyone else FFS!!
Looking round the SEN school r.e. Nursery placement for DS3 tomorrow afternoon, then colposcopy and Loop diathermy on Tuesday morning...
On my way to the SN school / Nursery visit. Pooing bricks about tomorrow, never had a general anaesthetic!
How did the visit go Couthy and good luck for tomorrow.
Leonie great result
School was AMAZING. And they were offering me advice on getting his statement so that I can 'name the school I want'.
All set up to deal with his allergies too - the HT's DS has a severe nut allergy! They have a swimming pool there, kept at hydrotherapy temp, and even Nursery go swimming at least once a week, all with 1-2-1 support. 2 different sensory rooms, a 'quiet nook' built in to the classroom...
It was PERFECT. You know when you get that 'gut feeling' that it's the right place for your DC? Well I had that today!
Bloody right too, the registrar ringing you to apologise!!
Merry great news about the nursery. Hope all goes well tomorrow.
I've not been able to sleep. Have been faffing around sorting out my iTunes! Just too much running around in my head.
Lost a big post earlier will update in a bit.
Couthy, sorry haven't had chance to get online today until now. Hope everything went well today. I hope your dp is looking after the dcs tonight so you can rest.
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