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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Terrible confession

223 replies

Adventurine · 22/03/2022 14:22

I'm about to say something terrible. And I only say it here because you don't know who I am.

I have a DD who has a neurological condition which can fluctuate. Some days she can walk. Some she cannot. She has tremors, clonus, spasms, dystonia, tics, incontinence, fatigue and complex pain.

This came out of nowhere for her a couple of years ago. Like- boom- now you can't be "normal."

I get how hard it is for her. I really do. But she is so so demanding and I swear she sees me as little more than her personal servant. What really pissed me off this week is that I have Covid, I'm really struggling, my other two kids have Covid, DH has been away for work. She's been off school after a recent spell as an inpatient trying to manage pain around her spine. She is sending me messages like "Mum, can you come and help me move to a more comfy position" and "mum, I'm hungry, can I have noodles" and "can you bring me a cold drink?" But if I don't respond within a few minutes she'll do this relentless whimpering that's so loud you can hear it anywhere in the house. On every outward breath. And she can keep it up for hours.

She can get herself to the loo. She can get herself up to get some chocolate or to plug her phone in or get her laptop. That's no issue. But everything else she seems to want to be served, regardless of how active or inactive her condition is. And this is round the clock. When it's terribly bad, of course I am there, but I don't see that I need to be stuck to her like glue and indulging every demand when it's not!

Today I have said to her that if she makes that kind of whimpering "I'm in agony" noise when she's just being mildly inconvenienced, she runs the risk of not being believed when she is in agony, since people will be so used to hearing it it won't spark any concern. I also told her to be respectful of the fact that I have three children who all need my help at the moment and that I am pretty bloody ill myself, so please dial down the whimpering and the demands, it's not fair, especially when I can literally see she's done stuff for herself like getting chocolates and ice lollies etc.

She didn't send me a message all day and was getting herself about, then just now she's messaged me saying she's in unbearable pain but she's trying to keep it under wraps so it doesn't inconvenience me and her siblings, and she's starving so can I please make her some lunch. She's made herself a sandwich half an hour ago and she seemed fine then. I KNOW when she's in pain. I feel like she's maybe taking out her frustration of her bodily limitations by getting me to do everything? I don't know. She soon snaps out of her infirmity when friends come to visit! Obviously not on terrible days, she wouldn't be able to, but on all the other days where she communicates a sheer inability to do anything so that I have to do it all.... if a friend comes, suddenly she's capable of getting up, doesn't make the whimpering noise, will happily go and get drinks and snacks etc, will do makeup and things.

It's pissing me off and I don't know how to address it properly because she does have a condition that requires an awful lot of support and she attends a school equipped to give it. No learning difficulties, just physical ones. I can't see how to tell her I'm not her goddamn slave without upsetting her and potentially making more work for myself as huge relapses in her condition are often brought about by stress.

AIBU to feel pissed off and really worn down by it?

OP posts:
loach81 · 22/03/2022 16:16

* Some days she can walk. Some she cannot. She has tremors, clonus, spasms, dystonia, tics, incontinence, fatigue and complex pain. *

A teen girl faced with this as a life long condition
My heart goes out to her and you

Adventurine · 22/03/2022 16:17

@loach81

* She soon snaps out of her infirmity when friends come to visit! *

Do you doubt the validity of the diagnosis?

Of course not. I doubt the severity of the symptoms at times when she's asking me for full assistance for total incapacity which suddenly melts away when a friend comes over

Can you piss off now?

OP posts:
patritus · 22/03/2022 16:20

Oh this all sounds very difficult for you all OP. I hope you feel better soonThanks

Other than psychological therapy is your DD getting any help with managing her condition? It's really important to set a level of activity which she can manage to do every day. Then on her good days she can manage a little more. IME people with long term conditions have good days and bad days but is very unusual to be able to make a sandwich half an hour earlier and suddenly not be able to get yourself anything to eat.

What is her psychohistory saying about this?

Orcadianrythyms · 22/03/2022 16:21

You are an amazing mum @SexiestDogWalker by the sounds of it. You just need to hunker down until you feel better BUT then there is a family conference where a new way of operating has to be set. It will be better for your daughter and your other children - I'm not saying this to add guilt but it's easy to overlook the other kids in this scenario and that's not fair either (they just don't whine).
You can't do anything when you feel so crap but you will sort this Brew

loach81 · 22/03/2022 16:21

Bloody hell!

MelCat · 22/03/2022 16:24

OP functional overlays on top of organic problems can make it harder (my sibling has MS, but also FND), because then he gets bounced between departments, he's everyone else problem!

You are doing a great job. I have a child with a chronic illness, including pain and it's exhausting.

I know your daughter has had lots of assessments, but I would still recommend getting her under a paediatric pain team/functional disorders team. As well as some inpatient rehab for your daughter they will also probably do family therapy so you can discuss your feelings in a space safe, without feeling a terrible parent.

Where are you in country?

LowlandLucky · 22/03/2022 16:24

cornflakedreams One day those words will come back to haunt you, you might just be on your arse and in desperate need of a kind word.

LittleGwyneth · 22/03/2022 16:25

You're still a person. You don't become a saint when you have a person you love who needs you a great deal. Cut yourself some slack - however much you adore her, that does sound very very draining.

Adventurine · 22/03/2022 16:26

@MelCat

OP functional overlays on top of organic problems can make it harder (my sibling has MS, but also FND), because then he gets bounced between departments, he's everyone else problem!

You are doing a great job. I have a child with a chronic illness, including pain and it's exhausting.

I know your daughter has had lots of assessments, but I would still recommend getting her under a paediatric pain team/functional disorders team. As well as some inpatient rehab for your daughter they will also probably do family therapy so you can discuss your feelings in a space safe, without feeling a terrible parent.

Where are you in country?

Southwest England.

She is under paediatric pain team, there are a few different teams involved in her care. When we are home, it's just me. DH does as much as he can but her being a teen girl, naturally prefers mum to help with certain things

OP posts:
Mydogmylife · 22/03/2022 16:27

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ArmWrestlingWithChasNDave · 22/03/2022 16:29

Have you come across the spoons idea in disability? en.wikipedia.org/wiki/Spoon_theory

Not everybody likes it but it can help people understand chronic illness. I'm disabled and will ALWAYS keep spoons for going to the bathroom by myself, because the idea of someone having to help with personal care horrifies me. I'll also use spoons I can't afford to have a shower by myself. That might mean I go through all the physical activity of a shower, drying, getting dressed, and then I could cry at the thought of having to get up and find the TV remote. Likewise I could make a sandwich then unable to get myself a drink 30 minutes later.

She might be milking it and taking advantage of you as a personal maid, or she might really be unable to face some tasks.

Okaaaay · 22/03/2022 16:30

It’s completely understandable, you must be exhausted and frustrated (as must your daughter). So sorry - hope you find the advice on her helpful and, in time, some peace

sparepantsandtoothbrush · 22/03/2022 16:33

@loach81

Bloody hell!
Well what did you expect? You were rude! Accusing OP of not getting on with her DD and then accusing her of not believing her DDs condition when it was pretty obvious it was the severity of SOME symptoms SOMETIMES she was struggling to believe. And who wouldn't be the same when she can't be assed to do anything but then is fine when a friend comes over. The girl is taking the piss (SOMETIMES)
Pawtriarchal · 22/03/2022 16:34

Is it worse when you or others are ill? I mean, is she more demanding when some of the usual attention is (naturally) going elsewhere?

Prinnny · 22/03/2022 16:36

@loach81

* She soon snaps out of her infirmity when friends come to visit! *

Do you doubt the validity of the diagnosis?

Are you deliberately trying to upset the OP or are you genuinely that dense?

There’s a world of difference between symptoms caused by the condition and bone idleness unrelated to her diagnosis, or do you doubt the validity of that?

loach81 · 22/03/2022 16:38

I said my heart went out to her
I asked whether she questioned validity of diagnosis

I can’t see the problem?

MelCat · 22/03/2022 16:39

@SexiestDogWalker that's good she's under a Team (I'm presuming Bath, and if it isn't they are the people I would be trying to get to).

I think I would be going back to the Team then and asking for some more input on increasing her function, particularly during "bad periods". Also some work as a family. I understand she want you to do more, but that puts more of a strain on you.

Your covid has shone a light on how much you do, it's a particularly difficult time, but there will be others. As others have mentioned she will be getting older soon and more likely to be come depressed if her function is limited.

I hope you feel better soon and I really wish you and your daughter all the best. I really do understand how exhausting is.I remember getting really cross with my son because he had been to a party, and yes he was in pain, and his mobility was reduced, but he was doing really well. He then got in the car and started moaning about how much pain he was in and I just remember shouting, "well you can't be in that much pain cause you enjoyed the party". The reality is, as we all know, distraction is a powerful pain management tool, and I am sure we've all powered through events on adrenaline and crashed, but at that moment I was just so frustrated, and probably not with him, but just this was happening to him.

I have got really frustrated with my son at times,

Mrsmch123 · 22/03/2022 16:44

Your not a bad person. Your unwell and trying to look after unwell children. That in its self is hard enough without your daughter thrown into the mix. Granted she has bad days but it doesn't make you her slave. I would potentially ask her to lump jobs together that she wants you to do. Like you say she can go to the bathroom so could have picked up the remote on the way back. Hope you get a break soon.

Malibuismysecrethome · 22/03/2022 16:44

Hi this must be so hard. Can you get any respite care from Social Services? Or short-term foster care. I wouldn’t normally advocate this but I don’t see how you can deal with this on a full time basis without any help.

SpaceshiptoMars · 22/03/2022 16:45

YADNBU. Brew

I had several years of much the same (chronic pain, weird stuff). It made me soooo angry with myself and my body. Days and days of lying in bed staring at the cracks in the ceiling.

Can small changes to her room help? A little fridge, a microwave, a remote holder attached to the side of the bed, smart remote control for all the switchable items in the room, a grabber to reach for things....
Even a camping toilet in the same room for bad days
.

Waterfordaston · 22/03/2022 16:46

Practical stuff:
(Don’t feel obliged to answer)

Have you applied for DLA?
Does she have an EHCP? She needs one, and within that she should have a social care assessment as well as OT/physio/Paeds.

You can have a carer’s assessment in your own right, which I’d push for.

You shouldn’t have to struggle like this. And much as I’m aware I’ll sound like a ratbag, the fucking whimpering would need to stop immediately or she’d need a new bedroom as well.

MadameGazelleBand · 22/03/2022 16:46

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PupInAPram · 22/03/2022 16:48

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bluedodecagon · 22/03/2022 16:51

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loach81 · 22/03/2022 16:52

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