Very down

[needmorecoffee]

Paed just called and dd's EEG has got worse from her last one although not yet as bad as last July when they thought she might be developing Lennox-gastaut syndrome.
Don't know how much more of this I can take. Life is just shitty. He's doubled her keppra.

[needmorecoffee]

in fact, seeing as I'm hysterical already.... I've just had enough with how disabeld dd is, I want a normal life and I'm fed up of living with no fucking support. Told FIL about the EEG resulkts and he couldn't be less interested. Long as he and MIL get their fucking holiday in Cuba tomorrow.
There's no-one to talk too. My mum doesn't understand and she's depressed and our mortgage application to buy her a bungalow is going tits up and I don't know how to tell her.
We get no support, I have no RL friends and the highlight of my week is taking dd to the physio.
Its always shit and always bad news.

[yurt1]

oh god nmc, no advice at all. I wish I could suggest some way to get support but I know how screwed up the system is.

How often does she get EEG's?

[ancientmiddleagedmum]

Poor you, NMC. You are right, it is shitty and not fair. Can you have a drink or 10 tonight, and smoke loads of cigarettes (well that would be what I'd do). I don't know what Keppra is but I do understand about your in-laws and mother being so absorbed in their own lives that they don't support you. You are not alone though, we are all here on MN. [emoticon of loads of mners putting arms round nmc and pouring her a large one]

[theheadgirl]

NMC - I think we all feel people in RL often don't get it. I find it hardest to accept that things just won't get better, that this is it. I'm sorry you're feeling so down, I know there's no answers....
with love from theheadgirl xxx

[TotalChaos]

sorry to hear this, and that your families are so unsupportive.

[Mitchell81]

Sorry you are having a hard time at the moment. Not that it helps, but I am thinking of you.

[TheodoresMummy]

NMC, whereabouts are you ?

[lourobert]

So osrry to hear that NMC...so sorry. I know all too well about EEG results so can understand the anguish your going through. what I cant really pretend to understand is how alone your feeling right now with no family or rl friends to talk to.at times I feel alone but im really not i suppose.

Were going to Brainwave on March 19th but were going to go for the week and stay at Burnham-on-sea/ Planning on going to Bristol Zoo at some point. Maybe we could meet up over that week.

[moira199]

I'm so sorry to hear this. Sometimes it does feel as if there is no end to it all. I'm sorry too that family support is lacking. It is one of the most surprising things about having an SN child - that family and friends have such odd and unhelpful reactions.

[dustystar]

So sorry to hear this NMC I wish I was nearer to you so that I could give some RL support and a hug.

[needmorecoffee]

Hi Louro. Meeting up would be lovely. We'll have a motability car by then and actually be able to get more than walking disatnce from the house!
email is [email protected]
I'm in bristol
Thanks all who replied. I'm still feeling very low but getting stuff ready for dd's op tomorrow. Poor little mite, she goes through so much and I just wish I could make her better.

[Sidge]

NMC I'm so sorry that things are so shitty

We're here for you. You can cry on our shoulders any time.

[mymatemax]

So sorry that its all so shitty at the moment.
Nothing useful to say, I hope all goes well tomorrow.
Max xx

[AAW]

NMC I am new to MN (in fact this is my first post although I have been skulking around for some time!) my DS is 2, he has CP and microcephaly. I have nothing useful to say (nothing unusual there) but just wanted to send you a hug, you sound like a fantastic mum and it makes me so sad that you are not getting the support that you deserve. I hope that it goes well for you tomorrow x

[chonky]

Oh NMC - really sorry to hear about your news. How about that meet up? Please get in touch, I really am not a million miles from you

chonkychops hotmail com

Will try and mail you too...

[ouryve]

I'm sorry about your news. It's a shame your families are so oblivious to the fact that you at least need a listening ear and a bit of acknowledgement

[bullet123]

I wish I could help NMC, I'm sorry you aren't getting the help you all need.

[flyingmum]

NMC

How are you and your mite? Feel a bit useless but sending you every best wish and virtual amounts of alcohol, and chocolate

[Loli]

Hi NMC, sorry you're feeling so down, big hugs to you. I think i know how you feel though, im a SAHM, only got the one and shes 17 months. She has a rare brain condition and things are looking pretty bleak, developmentaly shes still like a new born baby, shes also a very puky baby and has epilepsy which so far is uncontrolled. Since having dd have lost touch with all friends i had (not that many), and also dont really get much support from family. Got to the stage where i actually look forward to hospital appointments, physio and OT because its something to do. God i sound really sad. Just wanted to let you know that your not the only one having a bloody shitty time. Chin up hun. x

[yurt1]

Are you new Loli? Welcome if so. It's really hard when your friends all disappear. Are there any SN support groups near you?

[Loli]

Hi yurt1, yes i am new, wish i'd have found this site sooner. there is a support group that i go to twice a month, other mums there have children that are alot more able than my ds and sometimes makes me feel a bit 'why did my dd get such a bit dollop of problems'. They've been really supportive though.

[needmorecoffee]

Thanks Loli. Hopefully Chonky will be visiting me soon hint hint hint

[heartinthecountry]

Hi Loli, welcome to mumsnet - what condition does your dd have?

My dd1 also has a rare brain condition (Aicardi) and epilepsy.

[Loli]

Hi heartinthecountry, my daughter has ACC (agenisis of the corpus callosum), microcephaly,epilepsy and a whole bunch of problems because of this. Was kinda researching myself what her condition could be as still haven't got a proper diagnosis as she has other problems they cant connect. Thought in the begining that she may have Aicardi but its been ruled out.