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To be so devastated (and so selfish)

23 replies

SamVJ888 · 10/08/2015 21:24

Just watching Epilepsy & Me on BBC3 and can't stop crying. Dd was diagnosed with epilepsy 2 years ago and is getting progressively worse and the seizures are becoming more frequent. I know it's not about me and I love her more than life itself but I can't help but worry what her life will be like, how she'll be able to be independent, what career she will have.
I'm being completely ridiculous I know but I'm so worried about her and what will become of her I don't want her to need me all her life (and not because I wouldn't give my life for her but because I want her to have her own life).
I'm babbling now I just need someone to tell me she'll still have an incredible life I think....

OP posts:

ChickChickQuack · 10/08/2015 21:27

Hand holding. Sorry you (and DD) are going through it. I have 2 friends who have it and both live fulfilled great lives with the help of meds.


elliejjtiny · 10/08/2015 21:30

Sending you an unmumsnetty hug. I feel the same way about my DS4, he has hydrocephalus and an immature brain.


nilbyname · 10/08/2015 21:30

Oh that's rotten, but with kindness, don't try and look too far into the future. Medicine is ever improving, there's all sorts of treatments and therapys and many people live with epilepsy happily and independently.



Salmotrutta · 10/08/2015 21:32

Sam - it's my understanding that sometimes it takes time to find the right combo of mess for Epilepsy?

And a colleague of mine who used to have very bad seizures when young eventually got stabilised until they were very infrequent once they found the right meds for him.



Salmotrutta · 10/08/2015 21:32

meds not mess!


midnightvelvetPart2 · 10/08/2015 21:34

My mum was epileptic and she was a teacher all of her life, she had to retire due to ill health (cancer not epilepsy related) but at that point she was a deputy head after being head of infants for years. She lived a totally full life, the only difference was that she was never able to drive and i had to learn what to do at a young age in case she had a seizure in public.

Your dd will be OK Smile Thanks


Sighing · 10/08/2015 21:34

My mum has a form of (controlled) epilepsy. As a result she has a group of friends through epilepsy. Have you access to a support group or network?


Peshwari · 10/08/2015 21:38

OH has epilepsy which was quite severe throughout his teenage years but he's gradually growing out of it - although he is 40 now!

I won't say it hasn't had any impact but it's moulded his life rather than destroyed it.


Stoneysilence · 10/08/2015 21:42

My lil bro is epileptic and while it wasn't easy in childhood and early teens (on any of the family but particularly hard on him), he found the right meds in his mid teens and is now completely 'controlled' and has a great career, fiance, drives, is post-grad qualified in his chosen academic field, etc etc. One form of epilepsy being so different from another it's hard to say 'it will all be fine' but I hope you and DD find sunshine among the showers. Flowers


TheFirstOfHerName · 10/08/2015 21:43

I'm watching this too. None of my children have epilepsy but one has ASD and I do wonder whether he will ever live independently, as obviously it's a life-long thing. I think he could potentially work but it's unlikely that he will ever be in a relationship. Sad

On a separate note, I find Amy very likeable. She really reminds me of my DD, who had GDD and is still a bit delayed in speech/language & motor skills, but has a similar sunny personality to Amy.


msgrinch · 10/08/2015 21:44

Have a hug and Thanks , I don't have any advice sorry but I really feel for you.


GrumpyOldBiddy2 · 10/08/2015 21:46

Am a bit tiddly right now but wanted to say that I understand that feeling completely (DS has complex needs), when he was 2-4 we spent a lot of time asking those questions. Now he is 10 and we have have grown to accept his entirety and that his frailties make him perfect. No matter what happens, he will be the best he can be and we will do whatever is needed. I promise, it does get easier.

Oh and I had an ex with severe epilepsy who worked successfully as a mechanic - lovely bloke (obviously why he's an ex, I tended to go for the eejits more).


WineIsMyMainVice · 10/08/2015 21:52

I'm sorry I don't have any direct experience of epilepsy in my family to be able to reassure you - but I have come across a few people in my workplace who live wholly independent lives and have good jobs. And I also know that for one of them at least, like previous posters have said, it was a case of getting their medication right and learning to adjust things to keep it under control as much as possible. So maybe things will improve? I hope so for you. Good luck.


mineofuselessinformation · 10/08/2015 21:53

Remember that this is someone else's life and future, not yours and your dd's.
I have two dcs. One has a life-limiting illness, the other has a severe disability. They're both doing remarkably well.
Take courage from the fact that medicine is evolving and changing. That doesn't take away from the fact that you can be sick with worry at times - I've been there, and still am on occasions.
Keep going, you don't know yet what dd's life will be. But, still push for the best help and medication that your dd can get.
Sending you strength, and my very best wishes.


hackmum · 10/08/2015 21:53

You're not being ridiculous. It's tough. One of my closest friends has epilepsy - she was diagnosed as a teenager and is now in her 50s. She's had a very successful career as a university lecturer and her epilepsy is controlled through medication. She even drives. She is also happily married with two children.

It doesn't have to be the end of the world, but it may take time to get it under control through the right medication. Let's hope as your DD gets older, they find better treatment for it.


ollieplimsoles · 10/08/2015 21:58

Flowers for you op, your dd will be ok.

Another one here with a bit of reassurance; my grandad was diagnosed with severe epilepsy when he was 25, hes now 77 and still doing great. Medicines are ALWAYS improving and evolving, he has tried lots of them in his time and has always been better for it.

Be vigilant about the meds, make sure your needs are heard at appointments and that everything is followed up correctly. If you stay on top of the medication, its easier to control and as others have said- it can take a while to get the right combination for each individual.


SamVJ888 · 10/08/2015 22:01

Thanks for all your messages and Flowers to all of you who have similar things to deal with. It just gets on top of me every so often and don't really want to upset anyone in my real life so you lot get it I'm afraid!! Given myself a headache with the crying so going to bed with a pain killer but thank you Smile

OP posts:

ILiveOnABuildsite · 10/08/2015 22:02

Completely understandable to be upset and worried. As mentioned above it can take a little while to get the right meds and I'm told by my friend who has epilepsy that the worst years are childhood/teenage years/early years post diagnosis and that often epilepsy levels/stabilises/becomes more regular or predictable in adulthood. Sorry if a bit jumbled I didn't really know how to explain what my friend had been telling me. For what it's worth my friend is a brilliant scientist with a PhD. Happily married with two children. She did have to go through a period where she couldn't drive as she had to have been seizure free for a certain period (sorry I can't remember how long) before being able to drive and she did find that annoying particularly has she was pregnant with second at the time and had to rely on public transport. But in the grand scheme of things it's not something that will terribly affected her life. She is driving again now and she is very happy about it. I think you can keep your hopes high for your daughter, hopefully she will find the right combination of medication/learn to avoid the right stimuli and her epilepsy will become easier to manage for her.

But definetly hand holding for you tonight, it's only natural for you to be worried at the moment and of course because you love you daughter so much you worry for her so much.


Harast · 10/08/2015 22:12

Had to comment as my DS was also diagnosed 2 years ago. To be honest I have found it a long process just to come to terms with his diagnosis, gone through upset, anger, sadness, even convinced myself he would grow out of it for quite a while (very unlikely). We are lucky that we have found the right meds and that has helped but I think its best to go day by day with it. You just don't know what the future brings even without epilepsy so don't look too far ahead. Make their days happy now and worry about issues such as independence and careers when they are old enough. Me and DH discussed watching the programme earlier and decided against it, sometimes it just a bit too raw to watch or read things. Wait till you are feeling stronger in the future. I wish you both all the best and please be kind to yourself


StampyMum · 10/08/2015 22:13

My sister had epilepsy from childhood, and she did also get it under control with meds. She had her own family and a very satisfying career as a senior manager in supported housing for adults with learning disabilities. She would go sometimes for a year or four without a seizure. I don't blame you for weeping, OP, but there's a bright future ahead for your wee one Flowers


waffilyversati1e · 10/08/2015 22:48

Sorry, didn't catch the programme

My sister had epilepsy from about 3 yrs of age I think. I remember her being a frequent fitter (we all had to learn how to handle them) and in and out of hospital. At one point she was a load of meds and in a coma for some time and admitted for several weeks and when she came out she had to re learn EVERYTHING. My Mum used to cry a lot about how she might be as she grew up..

As far as I am aware she hasn't fitted at all in adulthood except in her sleep in periods of intense stress. She is 27 with 3 gorgeous kids, she drives and is generally fabulous.

Sometimes its ok x


NoodlesAreYum · 10/08/2015 22:58

Check out the Young Epilepsy Facebook page. Lots of people talking about it there. My niece has epilepsy and they've helped her and my sister. Brilliant charity.


LuluJakey1 · 10/08/2015 23:14

I have a friend who has it and is a Head of Maths in a huge comp. She is married with 2 small children and it has very little impact on her life- very well controlled and has not had a seizure for 6 years.

A young male member of staff at work has it and he has regular seizures and can not drive. He drinks heavily and this affects his medication. The hospital have told him he needs to drink less. He is happily married, has decent holidays, holds down a responsible job.

My godson has it and had a terrible time when he was very little but it is very well- controlled now and he has a very normal life for a 7 year old. Very healthy, active, bright and lots of friends. He wants to be a Dr.

There is every chance your child will have a normal, happy life.

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