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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:
JuneFromBethesda · 01/07/2019 16:13

I’m so sorry SinkGirl, that’s such an enormous weight for anyone to be shouldering. I have no advice, just lots of sympathy.

Hopefully the HomeStart volunteer, once they’ve settled in, can give you a break - even if it’s just a chance to have a cup of tea in peace and offload to a sympathetic ear?

Foxyloxy1plus1 · 01/07/2019 16:22

It certainly puts the little irritations in perspective.

Does it help to know that people are listening. I hope so. Please have a rant here whenever you need to. Flowers

Daffodil2018 · 01/07/2019 16:25

You poor thing. That is so much to cope with.

I'm guessing you have no family nearby who could give you an occasional break? To be on standby on the spa day for example? It sounds as though you really need some time to yourself.

babysharkah · 01/07/2019 16:26

That sounds really shit. Sorry not much practical use 🍷 💐 ☕️

Sooverthemill · 01/07/2019 16:26

Your life is impossible. Vent away. I think the Homestart person will help once you've settled in with each other. Don't tidy up for them. Have you been in touch with contact a charity for families with a disabled child? Very helpful.

thesuninsagittarius · 01/07/2019 16:36

Oh sweetheart you're dealing with so much. I used to be a Homestart volunteer and, believe me, I NEVER expected anyone I was supporting to tidy up before I came. Or think of things to do, I'd think that was my responsibility as a volunteer really. We were told to be guided by what the family wanted us to support them with. Sometimes all I did was listen while someone talked, vented, whatever they needed. Maybe write down some things you would like her to help with; even if it's just 'I need someone to listen' or 'I'd like help with some domestic tasks.' If you don't feel, after a while, that you and she are suited, please call the volunteer co-ordinator, you can ask for someone else and you don't have to explain yourself.
You are doing amazingly well looking after your little boys, thinking of you and hope you get some real help very soon. Hugs

typetytypetypes · 01/07/2019 16:38

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 Sad 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 Flowers

Alwaysgrey · 01/07/2019 16:43

Lots of understanding here too. My two older children are a year apart and one has asd and adhd. Their younger brother came along and he also has asd. It’s very very hard. The younger years are overwhelming. I’d hear people at groups saying how hard they found it and they were parenting an nt child. I’d also say let go the small crap. Sometimes just getting through the day is enough. I lowered what I expected. If we sat watching CBeebies all day one day frankly I didn’t care. But it was very very hard. If you ever want to chat do pm me.

SinkGirl · 01/07/2019 16:47

Thank you so much - it does help to offload a bit. I just feel like I can’t breathe sometimes. That’s exactly what happened to me earlier - I started trying to do one task then 1000 other things started filling my head and I get just fell apart a bit. I just feel paralysed by how much there is to do and how overwhelming it all is. Sat now having a cuddle which helps.

No family around at all - my sister is the only family we really see and she’s hours away. I have some lovely twin mum friends but they’re all struggling to cope too. There’s really no one we can call on in an emergency (although if it were something really serious my sister would be here like a shot, I’m sure) and I don’t think I realised that until we had kids. DH’s mum only seems to care on Facebook and for her one visit a year. My mum passed away before I got pregnant.

Things have been really hard ever since they were born.

We have a Team Around The Family meeting soon - I am going to start asking about respite care etc but not sure whether we would qualify. I know there are people in far worse situations who need it far more.

OP posts:
typetytypetypes · 01/07/2019 17:01

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 Sad 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!

Sooverthemill · 01/07/2019 19:16

I hope the TAF meeting helps. Ask if you can have respite. They may have the funding. You need support. X

DtPeabodysLoosePants · 01/07/2019 19:35

Thanks 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.

Tarchie · 01/07/2019 19:44

Can you ask for a carer’s needs assessment? They will focus on what you need help with. My DM was carer for DF and received some money towards a short break. Assessment was done through social services and DM certainly found it helpful. I have also have DC with autism and other serious health problems, it’s very hard. 💐

sevenoftwelve · 01/07/2019 19:58

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. Flowers

Gazelda · 01/07/2019 20:13

Jeez, that sounds almost unbearable. I'm so sorry you're having it so tough. And that your DM isn't around to hug you and tell you you're doing a grand job.

How about asking the Homestart volunteer to help you brainstorm a task list and then order the list into what can be delegated, what is priority etc? Or she/ he makes you a cuppa and minds the twins while you do the list? I find that a list helps me feel a bit more in control. It doesn't take away the number of jobs, but it puts them into order and you may find one or two that you can pass to DH.

SinkGirl · 01/07/2019 21:03

DH asked me today if he could take over calling the hospital for me to sort it out, but he couldn’t.

It’s for a blood test rather than a clinic appointment and I had to:

  • Find out the actual date
  • Check what’s its for - whether it’s the stuff from his paediatrician on the system or the stuff from the geneticist I just got forms for

in the post
  • Check whether they can actually do both at the same time
  • Ask why we’ve only got a date for one twin
  • See if they can fit the other twin in at the same time and if not, reschedule making sure it doesn’t clash with anything and that the play specialist will be available
  • Ask how they want me to get a urine sample out of a nonverbal toddler who’s never sat on a potty and whether it has to be FMU or not...

I can’t expect him to keep track of all this stuff and it all interconnects so much that just delegating part of it just isn’t possible. He works full time, I work very very part time, so I know it’s me who needs to do it, it’s just some days it gets really overwhelming. I feel like I’ve broken my brain by trying to hold too much in it.

I have so many lists, I have lists of lists. It does help a bit, for sure.

I know that knowing people are worse off doesn’t help me, I didn’t really mean it like that - just that I know funding is so limited and I’m not sure we would qualify. But I will definitely ask. I do (or should) get some respite when they’re at nursery but they’ve been ill so often it’s been pretty rare for them to both be in for all their sessions in a week.

I’m hoping the bugs will die down now it’s summer, and that their immune systems will have had a good boost from the last six months! I’m not sure I can take another bug - I had pneumonia a few months ago after one of the bugs, I was so ill, and I still don’t think I’m fully recovered.
OP posts:
myidentitymycrisis · 01/07/2019 21:18

Hello SinkGirl, you are doing an amazing job and a very hard one. I work supporting families in similar circumstances.
I recently came across the ‘Eisenhower matrix’ it’s useful for helping you to sort things into urgent/important priorities. Perhaps your homestart volunteer could help you to organise your tasks around it?

SinkGirl · 01/07/2019 21:23

Just wanted to say thank you to all of you for being so kind. I know it’s just a bad patch and it will get better. I know the fact that it’s been a couple of week since they’ve both been at nursery is having a huge impact as I haven’t had a rest and the stress of DT2 being so unwell and so distressed has been enormous.

They’re due at nursery Thursday and Friday mornings so as long as DT2 stops scratching his scabs off I should feel better by the weekend!

OP posts:
SinkGirl · 01/07/2019 21:24

Thank you, will have a look at that :)

OP posts:
Sooverthemill · 02/07/2019 15:46

This won't really help you but, my now 20 year old DD has been unwell pretty much all her life ( nothing major but many hospital admissions and tons of time for school) and for the last 6 years she has been totally bedbound and entirely dependent on me 24/7. I get no help whatsoever and manage everything myself. My DH is useless and simply cannot get his Head round meds', appointments, cycles, ordering stuff etc etc. BUT if I had called on him for help ( I know, I shouldn't have had to) earlier he might have got better at it. He manages a budget if £10m so surely he has a capable brain! I also didn't get the right support early enough from social services and medics when she became very ill 6 years ago. I tried but gave up. But I always assumed this was temporary and it's not. I think I will be still doing it as I die. It's not. Neither is yours. You've only been doing this 3 years. Put in perspective, they reach 18 in 15 years time. That's a very long time. Train your husband, do spreadsheets, do charts, do lists. Get him to do them alongside you as well as support you when he is home ( I understand he works and he needs respite too). I don't mean to lecture but learn from me. A few months ago I had an emergency admission to hospital for myself and I begged to come home after only 18 hours rather than 48 as I should have because I was so worried about my DD. I then didn't get any recuperating time because I just had to go straight back to looking after my DD. I have made a rod for my own back. Please get help

SinkGirl · 02/07/2019 16:33

I’m so sorry Soover - it’s so hard. I’m so sorry things are so hard for you.

I’m honestly scared of dividing things up and then things getting missed but I know that if their needs increase I’ll struggle to manage everything.

Just realising how isolated and alone we are and it’s really scary.

OP posts:
Sooverthemill · 02/07/2019 17:24

sinkgirl thank you but honestly I just wanted to be blunt and tell you that you must get help now before it's too late. I absolutely understand that fear stops you getting help( because you worry others won't get it right) but if I had received the support we were entitled to at the outset we wouldn't be in this place now. My Laurent's are both dead, we have no relatives anywhere near ( minimum 3 and a half hours away) except for son who is an adult and works full time and no friends. I see nobody in the week as DH works away. I am totally isolated, please please don't let this happen to you! Could you give certain small responsibilities to DH or homestart? Eg repeat medications, dealing with school stuff? Small steps!

MoMandaS · 02/07/2019 17:48

Urine sample, in the hope it's one less thing to worry about: I had to do this a while ago for mine and they supplied me with a pad and syringe. Pad goes in nappy. Check every so often to see if he's done a wee, then remove pad and either shove it into large syringe and use plunger to squeeze tiny drops out (what they said to do) or (much more effective and what i did) use clean hands or an implement to squeeze pad contents into a clean container and syringe it out of that into the sample tube.

MoMandaS · 02/07/2019 17:54

Do they sleep through the night generally? (Just wondering if you're chronically sleep-deprived on top of general exhaustion and if that's something DH could help with.)

SomethingNastyInTheBallPool · 02/07/2019 18:00

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. Flowers

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