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.
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So far past breaking point - just need to vent
SinkGirl · 01/07/2019 13:42
I have no real wise words. But we’ve been in a very similar position to you - in fact what you describe is really familiar (even the chicken pox scenario!), this was us about 2 years ago. And I totally broke. Honestly, I cracked at work and told them I just couldn’t do all of this [gesticulating wildly].
My health fell apart (I also have a chronic illness). I totally did myself in. It has taken a long time to recover from the physical damage done to myself, through physio, exercises, diet, all sorts. It’s not perfect as I have done some longer term damage 
but it is so very much improved and I feel great.
All I can really say is, focus on the essentials. Do what you need to do, there’s some stuff you may have to let go of - I know what you mean about the Homestart volunteer making extra work, we got a care assistant which was great but also more admin and more thinking work, tidying etc. In the end I just said, right, I literally just cannot with anymore stuff, so DH took over the admin for the carer (timesheets, deciding what they need to do etc, that was possible for us but appreciate that may not work for you) and I just stopped caring about the state in which they saw the house. They’ve seen messy kitchen, laundry on the floor, toys scattered everywhere, breakfast on the table, bathroom needing a scrub and so on.
I really had to strip back and say to myself, what can I really not live without, or not bear to lose? Which ultimately was DH, the DCs, my health, and enough money to get by. So we basically winged it with everything else (insurance renewal? Whatever, fine, just do it; dress up day at school? Don’t care, they can just wear what they like; food? chicken dippers it is, who cares, as long as we’re not living on complete junk... and so on).
I also found a good parents group locally for parents of children with SEND, I don’t go along to anything (too much to do!) but I am part of a WhatsApp group which is really helpful.
It might not get easier overnight, but for us things are so much better now they’re a little older (Y1/Y2), and we gradually made some more changes which have improved our quality of life a lot (I changed job to something much more flexible and less stressful and we even moved house (!), somewhere better for the DCs).
A lot of hugs and understanding 
It varies a lot by local authority, but we were able to get care support (so support at home and/or respite, we can use the hours as we see fit). A Carers assessment was done by a social worker under Disabled Children’s Services (part of Social Services). That helped so much. Just going out for a coffee for an hour with DH... wow. We had forgotten what it was like!
They look at the whole family situation, so they also took into account things like my work, our health conditions, whether we have family support (not really, like you if there was a real emergency I think we could get someone over within a few hours but no regular moral or practical support) etc. It was based on determining whether we needed that support, and not simply on eg the diagnoses of the DCs or our income.
Many services are being cut due to budgetary constraints but hopefully you will be able to access some support.
Now both DCs are in full time school it makes a big difference. They’re also at an age where, although they still pick up bugs from school sometimes it doesn’t seem to be anywhere near as much as when they were in nursery and what they pick up now is the occasional cold or a day of diarrhoea for example. Not so much the projectile vomiting, chicken pox, fever etc type illnesses which seemed to be the norm when they were smaller!
for you OP. One thing that stands out is you doing everything and not your DH because the medical stuff is complex. What would happen if you became ill and were in hospital say and couldn't do it? He'd need to wouldn't he? He needs to know everything that you know so that you are a team. You're trying to do it all yourself and that's too much. He needs to step up but you need to let him. You're not superhuman and will collapse under the strain. Your body is already telling you it needs a break. Dh taking some of the mental load would help. I hope you can find some balance as at the moment it sounds like a one woman show. Let him take some of that load. If he won't then that's different.
I know there are people in far worse situations who need it far more.
Ok, but does that make you any less exhausted? Does it make the health stuff you're managing any less complex? Does it make juggling all this any less overwhelming? Does it reduce the impact of any of the incredibly tough stuff you're trying to manage?
Nope. Being empathetic is great, but not when you use it as a stick to beat yourself with. You don't have to be the one person in the world suffering the most for your stuff to matter or for you to be deserving and needing support.
Please don't torment yourself like that. Other people's circumstances aren't relevant to assessing where and how you need more support. Your needs are the only relevant point in working out the help that's right for you. Not what different people in different circumstances may hypothetically be able to cope with.
On the hospital front, do you have the phone number for the secretary for the relevant consultant? It's usually on the clinic letter the consultant copies you in on after an appointment. Once you have a named consultant, speaking to their secretary to chase up AWOL appointments is usually so much more effective than trying to call the department or outpatients (which is my understanding from your post of what you've tried so far). Some hospitals list them on their website.
I wish there was something magical I could say that would make life easier for you, I really do. You've got so much on your plate, it's understandable you feel so upset. It's really hard when you don't have a support network around you. I hope being able to post here has made you feel less alone with it all.
Huge sympathies and hugs, @sinkgirl. We’re in a very similar position - disabled DD with very complex needs and no family support - so I really do get it.
What has helped me most is finding other parents who understand - it’s easier to socialise with families similar to your own, as everyone knows the score - and FB support groups for my DD’s conditions.
Definitely check what respite you could be entitled to. Look at your LA’s local offer - respite is often called “short breaks” and tends to be outsourced by the council to other providers, offering a range of different options.
Also, it all gets easier once they’re at school. You still have to deal with the health stuff, but the developmental side of things, eg SALT, OT and physio, are done in school.
I always thought my DP wouldn’t be able to take on any of the appointments and keeping track of things but since I’ve gone back to work, he’s had to step up - and, guess what? He manages fine. (Obviously I’m secretly checking everything, but I don’t actually have to be at all the appointments and meetings, which does make a difference.)
Chin up, OP. It sounds completely hellish, especially with the pox. But it won’t always be this tough - just make sure you’re getting all the help you’re entitled to. And PM me if you want to chat with someone who understands.
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