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Mental health

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Original poster

To think that i could actually die from no sleep?

37 replies

Defeatedbylife · 21/07/2021 05:28

Im so exhausted,feeling sick exhausted,feeling very dizzy exhausted,all confused exhausted.ive not slept a full nights sleep in over 11 years,my son has severe Autism and barely sleeps,its got worst as hes got older,hes on every medication he can be on.Every thing has beem tried.He copes well on two or three hours at the most every night.im not coping,finding myself unable to concentrate,feel shaky,weepy,and unable to drive.
I sometimes wish i would just die so i wouldnt need to live this miserable existence. Ive no joy,every day is a repeat of the previous day,hard work on constant vigilance to keep him safe.
Its 5.30am ive had one hours sleep in between running all over the house after him.

OP posts:

SayMumOneMoreTime · 21/07/2021 05:33

Love, that sounds awful. Can anyone else have him so you can sleep? You need some respite ASAP.

MoltenLasagne · 21/07/2021 05:37

I'm so sorry OP, I don't have any experience of high needs children but wanted to give you a handhold.

You're right, lack of sleep is a torture technique and does have serious health implications.

It doesn't seem right you're expected to cope with this on your own. Is there respite available? You may get better support from posters in SN Children who have been in a similar position.

CurlyWurlyTwos · 21/07/2021 05:38

I am also up tonight - although pregnancy related.

You sound like you need desperately need respite care. It doesn’t sound like you have support. Although you should have some place!

Does your son have support in place? A social worker?

When you have time (I know impossible) you need to reach out to social care and demand it.

This is a priority, YOU are a priority!

I hope that you manage to get the ball rolling….

PinkyU · 21/07/2021 05:41

I have no advice but I stand in solidarity with you. My youngest is autistic and sleep is a much prized commodity here, I’m yet to close my eyes in the last 24+ hours and know today will bring an onslaught of difficulties.

and

endofthelinefinally · 21/07/2021 05:43

If you report your thread MN could move it to the Special Needs board. You might get some practical advice or suggestions there.
You ar definitely not being unreasonable. I am so sorry you are struggling so much.
Do you have a social worker?
Have you had a carer's assessment?
It is absolutely shocking that so many carers have been left to cope alone like this.
Does your son have a school place/ any respite care options over summer?

Ludoole · 21/07/2021 05:43

Lack of sleep is absolute torture. I can empathise with that! Last week I had 12 hours sleep total between Sunday night and Friday night and I felt exactly how you described.

As others have said, you need to get some form of respite/support because you absolutely cannot carry on like this.

JustAnotherDayWorkingAtHome · 21/07/2021 05:44

Oh OP that sounds so tough. No the same but when my mum had serious mental health issues and towards the end we had carers overnight provided by local authority as she couldn’t be left overnight. I think you need to see if this is available I think your GP would be a good start to help you with this.

squiglet111 · 21/07/2021 05:44

This sounds terrible op 😥 you definitely need some respite. Would an overnight carer be possible to look after him while you sleep? Can you speak to someone about trying to get this or funding for this? 💐

Cloudninenine · 21/07/2021 06:31

That sounds so awful. You need some respite ASAP.

Can anyone at all step in? Friend / family member?

Is he entitled to any respite care?

Could you speak to social services about his needs and see if they can offer any help?

You’ve probably already thought of all these suggestions, but just in case. I’m so sorry. Sleep deprivation is a terrible torture.

HRH2020 · 21/07/2021 06:45

Please ring social services and tell them you are not coping .

Zoeyclash · 21/07/2021 06:52

You poor thing. That sounds so tough on you. I hope you manage to get some respite soon. You definitely deserve a break. You sound amazing to have been able to cope with so little sleep for 11 years. Best of luck.

pilates · 21/07/2021 06:59

Yes please get some support from social services, you cannot continue like this

Dontjudgeme101 · 21/07/2021 07:19

That sounds really tough op. Please get yourself some help, you definitely need it. Have you any family that can give you respite care?

Lotsachocolateplease · 21/07/2021 07:25

My first thought was respite care. You absolutely need this but I have no experience of how to go about getting it. If you ask mumsnet to move this to the special needs board I’m sure you’ll get much more expert advice.

Dorisdaydream2 · 21/07/2021 09:20

I feel for you, lack of sleep is absolute torture! Are you able to get some respite care?

Noterook · 21/07/2021 09:22

Sleep does weaken the immune system, can lead to MH issues and cause physical symptom, you absolutely need some support and cannot keep going on as is. I know it's not easy to access and I'm sure it's something you have considered before, but do you have any support from anywhere? Can they help you get some respite care?

VestaTilley · 21/07/2021 09:27

My goodness, I’m so sorry, that sounds horrendous.

Do you have trusted family who could take him for a night once a week so you can sleep? Or could you ask social services for help? They wouldn’t do anything like take him away, they’d just help you find respite centres or short stay residential care places. Do give them a ring.

Are there local support services and groups for people caring for those with autism near you?

Justilou1 · 21/07/2021 09:39

I am in Australia, so I know totally different planet almost.. Is respite care available atm? I think you are potentially more at risk of danger to yourself or others atm, than Covid may be to you or your child.

Cowbells · 21/07/2021 10:17

YANBU. DS2 has autism. I had an average of 1 hour sleep per night for the first year. Maybe 3 hours per night for the next 2 years and no more than 5 very broken hours until he hit puberty when he started to sleep longer hours.

It's brutal. I used to think it was worse than sleep deprivation torture because at least if you are a tortured prisoner you can legitimately hate your torturer and have that emotional outlet whereas I had to (and did/do) love mine which is an added mindfuck.

Does he have sleeping tablets? Have you asked the doctor about the option of this? DS didn't but I wished I'd had the guts to ask.

Has he been checked for ADHD? Is he on ritalin? Might that help?

Also, you need respite. You must have some. Would you like me to research places which might offer him a residential week so you can sleep?

By the way, once DS started sleeping (at about your DS's age) I got chronic fatigue and slept for about 16 hours a day for several years. I still wonder if it was just catch up.

OP I completely understand. I had days when I genuinely couldn't remember my own name. It's terrifying.

Cowbells · 21/07/2021 10:20

I'm guessing you've already seen this page on respite care for parents of autistic children.

Would you like me to follow it up for you and find out the full details?

By the way, don't feel guilty that he will stress or rage or panic or fugue. You need this. However difficult the respite is for him, remember your sanity depends on it.

Cowbells · 21/07/2021 10:22

Sorry -link to page:

www.autismspeaks.org/respite-care-0

Blowingagale · 21/07/2021 10:33

Yadnbu Sorry you are going through this. It must be terrible dealing with daily life with so little sleep. Maybe a charity such as NAS could help you advocate for the respite you need rather than you having to do it all yourself. I know it’s more work but could you do a sleep diary as evidence?

Nengineer · 21/07/2021 10:50

I don't have anything useful to add except that I am so sorry things are so hard.

Original poster

Defeatedbylife · 21/07/2021 12:45

Ive been desperately suicidal all night ,ive finally had three hours and feel semi human. My head is banging a drum loud as can be.no friends or family support,social work have been tried theres no overnight available due to his level of needs

OP posts:

JackGrealishIsMyNewManCrush · 21/07/2021 12:53

@Defeatedbylife This is one of a number of threads you have started this past few weeks. Including one where you said you wanted to take your own life... You DESPERATELY need help sweetie.

I am not an expert, but from what you have said, it sounds like you need to have your boy put into specialist care, maybe even permanently, with you having access to him one or two days a week. (Or maybe even foster care...)

Is there a dad on the scene or is it just you?

Contact social services, before you do something desperately sad, and your son is left without you. Tell them you are not coping, and need to place him into foster care.

On a thread you posted last week, someone said they know a woman who placed her son into foster care, the foster carer got tons of help with him. WAY more than the birth mother!

Anyway, please contact social services. You cannot go on.

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