Hubby and epilepsy

[Lancashiregal10]

Don't know if I am allowed to post twice in a day but feel horrible

I have epilepsy, have done for 11 years, DH knew when he married me and when we decided to try for baby that it was uncontrolled.
I seem to be ok for a few weeks then have a really bad day
The trouble is hubby is really losing patience with me when I have a bad day
Today is Father's Day (just in case you did not know). I got him some really nice pressies from DS (10 months) and let him have a nice lie in.
The plan was then to have dinner and go out for the afternoon to the park and then on to parents to give my dad and his dad their presents.
But the seizures have struck again and I am lying in bed having loads, I also get auras (warning of seizure) and have had a consent one for the past two hours.
He has just thrown me a filthy look and stormed out with DS. We have actually nearly broke up a few times due to his attitude.
I so can't help it, I am trying a new medication despite the horrid effects including sickness and hallucinations. I have gone on the depo injections to try and stop my periods as they seem to be triggering seizures.
I manage to looks after DS and work and I keep the house tidy.
It's like he expects me to do something but I am doing everything I can
I just feel like total shit :(

I don't think your sis is right Hedgehog80 - my friend from my youth was an au pair and nursery work with uncontrolled seizures (epilepsy from a head injury) - she now has a child and is the main carer of her DC.

I didn't think it sounded correct as couldn't see why it would be the huge problem she was making it out to be. I might mention to her gently that perhaps she is wrong and would in fact be ok.

By the way, if we're having an epilepsy chat - can I ask if anyone uses a smartwatch? They are super expensive but my DS is 8 and I am thinking he will want more and more freedom and it would be a good way of keeping tabs on him without being too intrusive. helpepilepsy.com/buy-now/

He has mainly nocturnal seizures which were totally controlled on keppra for the last 4 yrs but the paediatrician has been putting us under a lot of pressure to wean him off (to see if he has still got them). We are v reluctant but have agreed to keep his doseage the same while he 'outgrows' it - so like a very slow weaning process. It is extremely stressful and I worry a lot about possible inujuries/SUDEP. The NHS have been v unhelpful about this, telling me to get counselling and that my 'mother's intuition' will keep him safe (a load of bollocks).