Epilepsy

[Tina777]

Hi

I had a little fall in Dec 2012, resulting in a hemorrhage and subsequently surgery to remove the blood clot that had developed in my brain. I have all the usual symptoms, including loss of left vision.

Was kind of dealing with it and grateful that at least I could look after my one year old grandson once a week while my daughter works. I live for a Wednesday, when I do nothing but sit on the floor and play with him. At least I did until a second epileptic seizure in 12months means a diagnosis of epilepsy and the devastating advice that I'm not allowed to be in sole charge of minor.

Cannot process the unfairness of it all. I'd have preferred to be diagnosed with something terminal than this further removal of anything that gives me pleasure.

Sorry for negative post but reaching the end of my tether.

Grateful for advice on anything similar, preferably with a good outcome!

[cat3]

You poor lady ; these 'extras' can be very cruel and I'm so grateful not to have seizures as one of mine.

I know there are many folk on this forum who struggle with attacks since their brain injury, but I haven't seen anyone with this sole caring problem, although I suppose it's inevitable.

Is there a day when your daughter isn't working that you could care for your grandson in her presence ; maybe let her get on with chores whilst keeping an eye on how you're doing ?

There has to be a way round this surely Tina ? I do hope so. xx

[Tina777 in reply to cat3]

Thanks Cat. I've been on waiting list for neurologist since 1st seizure a year ago (interestingly NICErecommend everybody is seen within 2weeks of a seizure!) and have recently been referred to neuro psychologist to see if there is any help for the suicidal feelings so it's a waiting game at present.

I can still look after my grandson but must have a responsible adult present. It doesn't mean I can never look after him but will be more difficult to arrange and won't be the regular day it has been until now. Was just letting off steam earlier. Tx

[moo196 in reply to Tina777]

Hi -

Sorry I don't have experience of this issue - except for the seizures bit early on in my diagnosis phase ....

I wonder - on a practical basis - if there is a play group that you could attend together ? Or could you " buy in" an extra pair of eyes / hands just in case for half a day regularly ? Or local 6th form nearby that could "lend" you someone who is studying child care or doing social voluntary services .. ?

Hope something turns up for you x

[Tina777 in reply to moo196]

Thanks Moo!

I must admit, I'd not thought of these ideas. Thanks to my lovely tbi, I don't drive and my daughter (understandably) is not keen on me taking the little one out in his stroller because I sometimes, unknowingly, veer to the right. Not confident that I would find anything close enough but getting a student or similar is well worth looking into. I'm perfectly capable of looking after him, it's being in sole charge that's the problem. Tx

[moo196 in reply to Tina777]

Hope you find something that works.for a few months (well before abi) I had a lady come in on a Tuesday afternoon just to "help" me with my kids......

Wonder if you could find another granny to be with you? Or could perhaps have a cleaning lady in at the same time?? Win/win situation if it might work?

[paxo05]

Hi Tina.

Hopefully this is temporary glich. It is suprising what unusual impact epilepsy has on your life.

I feel lucky that mine is and has been undr control for a few years now with medication. Although I dread its return.

I helped out voluntary at a day nursery abd even with my epilepsy under control they felt initially reluctant for meto help out. I ended up asking the parents if they had any objections. Luckily for me they were supportive of me.

Hope you get it sorted.

Pax

[Tina777 in reply to paxo05]

Thanks Pax.

As with TBI, there is a great deal of ignorance around epilepsy. I understand the need for caution but hope I can find a way around it. It doesn't help that I don't have local friends/neighbours!

[MedicalAngel]

Hi

I've recently been diagnosed with epilepsy.

I know how it can change your life and the independent person you once were is no longer who you are now.

I know how friends and family don't 'get it' don't understand.

Isolation gets worse and depression gets worse.

Maybe ring the Epilepsy Society who have epilepsy nurses and maybe they can come up with some reassurances and hope for you.

Bits crossed for you xx

[peaches2]

Oh Tina I truly sympathise with you on this. I would be exactly the same, hearing that I couldn't have my grandchildren alone would upset me too. I am actually scared to have to go back to see my surgeon as when he asked what my fears were re more brain surgery I said seizures (for that very reason along with the fact I already have slipped discs in my neck and can't imagine dropping to the floor!) My surgeon was not sympathetic at all....I actually wouldn't repeat it as it still upsets me to this day. Please think about some of the alternatives suggested and try not to upset yourself anymore than you are, although v difficult I know. I personally liked the.... get a cleaner round at the same time! Bingo that sounds great but obviously yes only if you can afford it. If you can it's def an idea as what could be better than having your grandchild round and not having to clean in the same day! All the best to you. Let us know how you get on. xx

[flowflow]

Hi Tina, how devastating Epilepsy is still so misunderstood and ive met many people whose lives completely change because of it. It strips them of their freedom or the feeling of independance. Is there any way that you could have a PA via your local authority? I Know it may not sound appealing but it sounds like what you need is someone about should the worst happen but as you said you are able to be with your grandson- its just about reassurance if the worst should happen. If it's causing your mood to plummet it's worth asking local authority if you are entitled to a personal budget for a PA due to your health needs and for your psychological wellbeing so you can just have somebody 'around' while you see your grandson- they don't need to babysit you- their sole purpose would be to just be there if needed? 

I really hope they can help treat your epilepsy and get it under control 

Xx