To ask you for some moral support/positive stories

[LoveFridaynight]

I feel on the verge of a nervous breakdown and really need some moral support.
My DD2 had been suffering seizures since July. In the last week she is averaging one a night when before it was two a month. Have left messages and emailed her consultant twice but they never get back to me and obviously getting really concerned now about how frequent they are.
My DS is supposed to be increasing his hours at primary school but the headmaster has said he will get back to me but doesn't. I'll get in touch next week I keep being told and then nothing happens.
My mum.is in hospital. She's broken her arm and is in her 80s It's really knocked her confidence she's barely eating or drinking and she's non mobile now. I can only get to visit her once a week because of my children (the two I've mentioned are both autistic) and I feel guilty (not helped by the fact my siblings keep making comments).
If it was just one thing I could keep going but at the moment I feel on the edge. I keep crying and can't concentrate on anything. I really don't feel like I can carry on.

OMG, hugs, you poor thing!!

First thing - you are doing great in shit circumstances! Take a break, have some tea / coffee / cake / biscuits. You can't do everything if you don't first take care of yourself.

Second thing - ditch the guilt. Your mum is safe and being cared for. Your siblings can shut up and/or pick up more visits themselves.

Third - probably the thing to do with the consultant and the school is call daily. Very politely, but don't stop calling until they actually do something.

Can you not go to your GP and ask for an urgent referral re your dd?

Oh you poor thing.

Let me guess, your siblings are happy to comment on what you do but can do no wrong themselves, and are probably a bit useless?

Daily calm chases to the consultant and school. Remember you are doing your best for everyone. Remember that that has to include yourself, you can't pour from an empty cup and all that.

OP I wonder randomly if you got in touch with the Pals advocate people at your local hospital..they may be able to offer support to help your mum or advocate on your behalf? That might take some of your pressure off there. Also you could ring your GP Practice Manager to ask if they could enquire on the delay you face for your little one as things seem to be going in the wrong direction? I know its not much but it might be worth trying just to be listened to and for practical advice? You could also ring the secretary to the consultant they might give you some indication of waiting times to be seen> Might just take some pressure off you a little. I am really sorry you are having such a hard time bless you

First of all OP, you have nothing to feel guilty about. My daughter was diagnosed with Epilepsy around 5 years ago, and tbh I can’t put into words how it has affected me personally, and the rest of my family. Your siblings don’t and won’t understand what it’s like, as they haven’t had to witness their daughter or loved one having a seizure. Please don’t listen to their comments, discredit them, You do you and know you are doing an amazing job and your kids are lucky to have you, they really are. One thing at a time. We had an alarm that goes underneath my daughter’s mattress that detects seizures. Does your daughter also have an epilepsy nurse? All you can do is be persistent and keep trying to reach them, keep trying. They will hopefully get to the bottom of the increase in her seizures. Keep on trying to get hold of the head teacher too. You have to fight for everything, it’s gets to you, but Channel that frustration and never give up. I also have autistic kids too, so I could write a whole other post just about that one, as you probably know. You’re just having to deal with a lot more than most at the moment, but you will get through it because you’re you.

Thank you all. My mum is now at end of life care which is destroying me. Been at the hospital most of yesterday and today and it's horrible. She's not really mum anymore. She is just sleeping with pain relief going in to her veins.
I have barely even cried. Feel like a complete bitch but I just can't accept this is it. I know everyone dies but she went downhill so quickly and now she's nearly gone.
I did have some positive news. DD was given an appointment at neurology for this Thursday and school have (with loads of nagging) agreed to extend DS's hours to 2 and 1/2 hours a day.
Both these were confirmed Friday morning so I was positive going to the hospital but now I feel deflated.
The hospital for DD is good news. So is school but if I could choose I'd rather have my mum alive and school refusing extra hours.
There's no point to this really but wanted to say thank you for the support.

I'm so sorry about your mum, that must be such a shock. It's totally normal not to feel what you would expect to feel, especially when things happen so suddenly. Massive hugs.