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So far past breaking point - just need to vent

36 replies

SinkGirl · 01/07/2019 13:42

I’m sorry, I know nobody can sort any of this, I just need to get it out and I have nobody to talk to. I’m falling apart and feel like I can’t funcyion any more.

I have beautiful wonderful twin boys, nearly 3. They are both autistic, and one has other disabilities too. The last six months have been so so hard, just an endless stream of things that have to be done - portage, speech therapy, DLA applications, blue badge applications, settling in at nursery, now starting the EHCP process, five different hospital consultants, appointments all the time, tests and more tests...

The boys have been sick pretty much constantly since they started nursery - one will get a bug, then the other will, then we will, then just as we all get better they’ll get another bug. Then this month they both got chicken pox (one caught it from the other so just as one got better the other got it). Both got infections, the second a really nasty one needing antibiotics and he’s finally recovered.

Sent him back to nursery this morning because he’s been totally scabbed over since Friday. DH took the morning off and we went to the cinema because it’s my birthday tomorrow and we haven’t been out since February. Just as we sat down, nursery called to say we had to come and pick him up because they’re not all scabbed over which isn’t true - rushed over there and he’s scratched off a few of the scabs, that’s it. They are obviously not blisters or in the contagious phase.

We recently got a homestart volunteer which I’m really grateful for but now it just feels like another responsibility because now I have to clean up and figure out something to do when she comes round.

I figured I’d just get on with the huge list of tasks that need doing. Called hospital because they’ve sent me an appointment for a day that doesn’t exist (Thursday 8th July - I guess they mean the 18th?!). Either rings out or it’s engaged.

Called the other local hospital because we should have an ophthalmologist appointment this month but none has arrived (this happens every time) - when you select the right department you just get a message saying they’re too busy and it hangs up on you! You can’t even go on hold.

I have an ovarian cyst that’s super painful. I have carpal tunnel that’s driving me crazy and making it hard to function. I also have ME and I’m shattered. Oh, and after having clear skin for a while I’m suddenly getting huge blind boils on my face which are solid and really uncomfortable.

I’ve got about 20 tasks I need to get on my laptop and do, and I can’t even face opening it. I’m just completely overwhelmed. I can’t even hand tasks off to DH as I’m the one who deals with all the medical stuff and it’s too complicated and all intertwined to hand over any of it.

I have a very part time, flexible self-directed job and I am not doing it properly. I should probably quit but that’s £5k a year I really don’t want to lose so I need to get my shit together.

I’ve just booked a spa day for DH’s 40th, it’s very expensive but i have the money saved and I figured we could both do with it. But if the boys are sick or nursery call us to pick them up I’ll have to cancel it and lose the money because we have literally no one to help us out.

I feel like I’m drowning in it all. The mental load and responsibility is breaking me. I feel like I’m going mad. GP wants me to go back on anti depressants but doesn’t understand I’m not depressed - I’m fucking exhausted.

Thought it might help getting it all out but it doesn’t - now I’m just stressed and crying about it.

How do people get through times like this? I feel like I need to hibernate but obviously that’s impossible.

OP posts:
TulipsfromAmsterdam · 02/07/2019 18:22

Could your volunteer play with children to give you time to sort out the appointments/DLA application? Hide in another room and let them get on with it. If you get DLA award you can apply for Carers allowance which will be a bit help financially. If you claim tax credits let them know about DLA as payment goes up for disabilities.
We get direct payments from Local Authority which gives us 3 hours term time and 5 in holidays. The only issue is finding someone you trust to take children out. If you get on with the home start volunteer she may be willing so you and your husband can go out for a couple of hours.
I have a disabled 7 year old and times are hard so couldn't imagine double ** trouble.

ShadowKat · 02/07/2019 18:26

Flowers for you OP.

We had to do a few urine tests for one of my DC when he was a baby, and our GP gave us urine collection kits. As MoMandaS said, basically some pads you stick inside the nappy, and a syringe you use to suck the wee out of the pad.

Frith2013 · 02/07/2019 19:30

I got rid of all the bloody appointments as soon as possible!

DC1 had grommets. He has not, and never will “pass” a hearing test. So, when he was 8, I asked if it was necessary for him to keep going back for them annually. No, so I cancelled them.

Same for his small hernia. Nothing appalling had happened to it over 3 years of appointments. Cancelled then.

Autistic son. Saw the paediatrician dozens of times for a friendly chat. All pointless. Cancelled.

I hardly ever take my autistic son to the doctor as it is ridiculously stressful for him. We do it all over the phone. They’ll refer him for me without seeing him now - more time saved.

I got a charity to help fill in the first DLA form. Photocopied up and used those answers (updated) when it needs renewing.

I soon stopped trying to force him into Beavers, gym etc.

Frith2013 · 02/07/2019 19:31

Charity was DIAL but not sure if they’re nationwide.

SinkGirl · 02/07/2019 22:08

Thanks everyone. Sorry I haven’t been able to reply, bad day. Think I’m having some kind of breakdown. Just can’t stop crying. Hoping it will pass like it has before.

OP posts:
IamEarthymama · 02/07/2019 22:55

I have no experience to share but I can send you some love and good wishes.
Please look for voluntary organisations that may be able to help. There are people out there who can support you to find long term support for you and the children.
Try your local association of voluntary organisations, they will have a list of appropriate agencies.

Love and Blessings xxx

Sooverthemill · 03/07/2019 09:56

sinkgirl how are you today? I hope you can do something nice for yourself ( I am taking 10 minutes to mumsnet and read grazia having had a shit day yesterday myself).

SinkGirl · 03/07/2019 12:20

Thanks so much everyone, it’s been so helpful being able to be honest about how I’m feeling as I know DH sees it as a personal failing of his if I’m unhappy.

Yesterday was absolutely bloody awful, worst day I’ve had for a long time. I just wanted my mum, which I realise it’s very becoming for a woman who’s turning 37, but there we are!

Today my lovely homestart volunteer came with us to a toddler group at a specialist school with soft play and a sensory room. DT2 has passed out already but DT1 is still bouncing around his cot. Hoping he will sleep so I can have a rest but if not they’re due at nursery tomorrow morning so just clinging on to that.

I quit smoking in April and I’ve been fine but the past two days I’ve been absolutely desperate for a cigarette - it’s awful. DH would be really upset if I had one so I’m trying to push through it. Even my vaporiser isn’t helping.

OP posts:
jackparlabane · 03/07/2019 12:41

Just offering best wishes and if nothing else, at least they're incredibly unlikely to get chicken pox again! My autistic kids all got easier (not easy) once they were 3 - 3.5, so I hope you find the same (difficult neurotypical kids often turn into delightful preschoolers, too).

And congratulations on quitting smoking and staying quit - that's amazing!

JuneFromBethesda · 09/07/2019 11:33

How are you doing this week @SinkGirl? I noticed you mentioned the HomeStart volunteer on another thread and I was wondering how it went. It's early days but hopefully once the volunteer has got to know you and your boys she (he?) will be able to make a useful difference.

Flowers

AnguaUberwaldIronfoundersson · 09/07/2019 16:26

Would something like Wonderlist help you and your husband divide and conquer? It's a free shared to-do list app and it really helps
In our house. You can set reminders and reoccurring items. It might take the pressure off you for one or two things that he can do whilst he is on lunch at work.

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