In a really angry envious phase- tell me I'm not alone in this?

[DJAngel]

Hi all.. having a really crap week.. Feeling so angry with everyone, and so envious of my friends with their healthy non sn kids. Feel I have such a low tolerance for any what I feel are insensitive comments or discussions around my dd2 ( who has tuberous sclerosis,with epilepsy and global developmental delay, with increasingly challenging behaviour..)

I'm worried I'm going to alienate my rl friends and end up very isolated coz I'm so snappy if I think they've said something wrong..

dh says my expectations of people are so high and unrealistic and that people just don't know what to say. I feel no-one understands how hard things are for us and just carry on with their lives telling me loads of trivial stuff about their 'happy " lives. I know it's so unfair of me to think like this as no-one has an easy life with kids sn or not but I feel like screaming sometimes, or crying and yesterday at a kids party I felt like I was an alien.. I couldn't really talk to anyone for fear of spitting out angry snappy comments that were totally unjustified..

Last few nights have been dealing with seizures in the night and awake with her for periods of 4 hours at a time.. I know a lot of you know what that's like. We had a good period for a while - with lots of nights sleeping through - after many months of hellish getting a few hours broken sleep a night and I can't face gong back to that again.. We may have to increase drugs again although have weighed her and it's not that.

I just can't function on no sleep and when I'm so exhausted it has such a massive effect on the rest of the family. ds1 gets such a raw deal on days like today. He hardly gets any quality time with me as it is now he's at school full time. That's another story..

Oh what a droning on.. I feel better having got it out though.. I'm sure others recognise what this is like..

Thanks for reading..

How old is our dd2?

It's hard and how you are feeling is completely normal. The best 'antidote' I've found is finding people in RL who are going through the same thing. I have a friend close by and we speak on the phone most days- we say we keep each other sane.

No advice but I do feel for you. Lack of sleep I can empathise with, it's hellish. (((hugs)))

My sympathies, I hear where you're coming from. It's not surprising that you feel below par when you are surviving on broken sleep. When my ds was a pre-schooler, I only managed to cope with him as well as I did because I knew he would sleep at night - so coping with your dd's daytime challenges on very little sleep must be very difficult. You could always see your dd's paed. to talk about medication options for the night? I hope things improve for you very soon.

My dd has different issues to yours, but i really do sympathise. Like Manny, I agree that lack of sleep is pure hell -there's a reason why it was used as a form of torture! No wonder you are weepy and low.

I also find myself having times when I get irritated that RL friends don't 'get' what my life is like. To be honest, some have dropped by the wayside over the last year or so. The ones that are left are true friends.

I think that parties are usually trying - my dd never lasts very long and we are always leaving early or sitting outside while she has time to calm down.

It sounds like you really need a break -do you have anyone to help out? Sending you a virtual cuppa and big bar of choc x

i really sympaphise with you and also have been there feeling envious wanting and needing recognition for my hard work and lack of sleep feeling there problems are meaningless

i talk they cut me off with something so trivial in my mind i just want to be heard every now and then i dont really talk to many of my friends now my talking is on here with people that understand me

so feel free to rant and your not overreacting your human can your dh take sole care for dd so you can spend time with ds

or can you have someone watch children to escape for an hour to relax or just to sleep for an hr we have just got sleeping again at night but we had along time with barely 3 hrs a night and i couldn't function at all so i do know how hard it must be we dont have other children so in that respect i could be as lazy as needed

big hugs to you

How I empathise with you! It is such a bad joke being lectured by norms on their trials and tribulations and perfect lives! Remember this: no-one's life stays perfect forever. You have just found that out earlier than they have.

Try your best to meet RL people in the same boat (it took me years, but I've got there), or keep posting on here for the understanding you need and will probably not get from this crowd. I have finally accepted that others cannot be expected to understand our lives and I tend to compartmentalise my life and conversations now.

Try and hang onto the good friendships you have though. Some of them won't be worth it and will cause you pain, but it might be hard to make that decision when sleep deprived. Good luck with the sleep, I know what you mean when you say you can't function

You poor thing. As someone who also has no sleep, I deeply sympathis with you. Its a buggar isn't it! Doesn't help things at all.

You are definitely not alone. I feel my friends just don't understand why I'm snappy some days, why I look stressed to my eyeballs and why I'd rather stop in some days.

Thanks so much for your lovely replies.. Saintly - DD2 is 3 and ds1 5.. DD was diagnosed just over a year ago..
Finally got her to sleep just now and feel better for having had responses from you all as you understand how s**t things can get sometimes..
Dh often gets to spend the time with our son coz dd is so into mummy which is tough and I really feel that as a loss.. I miss the time with my son very much but we are trying to do more of swapping over.. It's balancing that with a wish to try and do things together as a family. Which nearly always ends in tears I might add - usually mine!
Will be having a few days away organised by our local portage in june in huge house with some other families with pre-school kids with sn. Hoping I can meet some people who will become friends there.. Fingers crossed..
Off to bed now to try and get a couple of hours in.. will be on duty later I'm sure..
Have a good week all ..

yeah i am defintley worse when not sleeping which is a lot atm.Ad whn friendsmoan as her 3 month old is only going 6-8 hrs wanted to shake her and say try 3- hrs a night for best part of 4 years

DJ -poor you. Agree with the others - lack of sleep exacerbates everything. Certainly does for me and I totally go into 'can't cope' mode. Hope you can get that sorted and then maybe the friends thing will be clarified - I see less and less RL friends who don't get the SN thing. It feels too trivial. I don't like it.

You poor thing - I hope it is a phase that passes. The sleeplessness and the envy.

For me, seeing a toddler take a ride on her father's shoulders was a killer. My dd2 just wouldn't be able to sit up or hold on.

Just wanted to send a hug, DJAngel. My sister has TS, so I know what a hard condition it can be - I think, especially as it isn't much known so other people can't immediately recognise what the problem is. I hope you can find support.

"Try your best to meet RL people in the same boat"

Excellent advice from donkey derby. It makes the biggest difference.

I hope you managed to get a kip and feel a bit better now. I had nearly 10 years of broken sleep and, even when it wasn't broken, I worried that it would be iyswim! I used to guard any free time fiercely and check my diary every week to build in time when I could "do nothing" or sleep, but doing nothing or sleeping is what I was actually doing iyswim again. Your DD and DS are young so its probably hard to get some time when you don't have to look after them. Is there any chance of help sometime so you can sleep? I used to resent it as I'd rather sleep at night and do things in the daytime but I just had to get over it and accept it, luckily I had the opportunity as DS was at school and DD hadn't come along by then. I also know what tclanger means as DS was our only child for 7.5 years and we had no idea if we'd be able to have another (long boring story) but I even found that other people almost in the same situation could be very insensitive about that. But meeting other local people with children with SN does help, almost all my friends are SN parents apart from family.