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Exhausted

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Julia21
Julia21 Community member Posts: 14 Connected
Just tired and needed to let off steam.
Adult son (19) has epilepsy. It's getting worse - he's had to leave university as can't live away and wasn't in local one.
Is back home but seizures getting worse - now 2am and I've just dealt with another one as he's usually has then when sleeping.
he wears a wrist alert but must have bashed it when seizure started and I can't find all bits to put back together.
so I'm sat in bed at 2am praying he doesn't have another seizure as there's no working alert to call/text me. I've got to get up for work in 4hrs and not sure how much longer I can do this.
I was supposed to be going abroad for a week  to a friends daughters wedding in November but am scared to leave son as nocturnal seizures can be risky.
Am just tired and frustrated with it all. x

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  • Rosie_Scope
    Rosie_Scope Posts: 3,290 Disability Gamechanger
    edited October 2023
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    Hello @Julia21, sorry to hear about the difficulties with your son. I have an adult sibling with severe epilepsy, and although they're not my child I can understand a small part of how worrying it must be for you. My sibling now lives independently, but similar to your son they also have a history of fits during the night. The 'what ifs' are incredibly difficult to think about.

    Your son will always be your priority I'm sure, but lack of sleep can really take a toll. Do you have any friends or family who are able to support you or perhaps stay over temporarily so you can get some rest? Is your son's medical team in touch about his worsening seizures?

    If your son has tonic-clonic seizures and uses a smart phone you could perhaps try one of the seizure alarm apps as a stop-gap until his wrist alert can be replaced or repaired. They can send alerts through to a nominated phone if they feel too much activity when he's sleeping. 

    Epilepsy Action also have a helpline that you might find useful. They may be able to point you in the right direction for some support or share some advice on how your son can stay safe during night time fits to put you a little more at ease. 

    I hope things improve for you both soon 
    Rosie (she/her)

    Online Community Coordinator @ Scope

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