Terrible confession

[Adventurine]

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?

Teenagers are hard work let alone when they're unwell. She's not the only person that's ill for once, and for a few days she's going to have to look after herself in the main. She is just going to have to manage.

You're not a monster, you're poorly.

I had Covid in December 2 days after my booster and for the 1st 48 hours I felt horrendous. I couldn't have looked after a fly let alone someone with a serious illness. Hope you're better soon

It is people like cornflakedreams who enable some people to take the piss because they have the attitude that being disabled equals no-one can ever challenge you. Well, they’re wrong.

OP tbh I would take a slightly hard line on this. Taking the piss isn’t on, and clearly she is. So I would essentially take things day by day. For the moment you’re ill and she is going to have to wait. And whimpering and sarcasm will get her nowhere.

On days when she needs the remote control fetching or the iPad I would take the view that she’s too ill to have friends over so better stay in bed all day and she can have friends round when she’s in a better place and is able to do things for herself.

She’ll soon learn that behaving like she is is only going to disadvantage her.

My parents had a friend who broke his back in a motorbike accident. He was capable of walking but he had a stick to help him. I remember being there once and he called his partner in the kitchen, and when she came in he asked her to pour him a drink. From the bottle which was sitting on the table in front of him. And the worst of it was that she did. Stupid woman. No wonder he took the piss. When his sister came to visit he tried the same and she told him to get a fucking grip of himself and stop his bloody wining and whimpering.

His partner left him suddenly, he got home one day and she’d packed up the house, taken all the furniture, and gone. Much like the first wife who had the proceeds of their house sale transferred to her bank account and then went to America. I wonder why.

I mean he was a twat before he broke his back, but still…

I am visually impaired and am in heart failure. if I pulled that kind of shit when I was at my worst I think that my family would have had something to say.

And apart from that, where the hell is the self respect in wanting someone else to constantly do your fetching and carrying.

I really feel for you OP. I don't think you're terrible AT ALL for feeling like this and venting it.

A couple of things occur to me:

What she is dealing with sounds incredibly tough. She must be dealing with all sorts of frustration and bitterness which are poisonous feelings. Has she had any therapy? I wonder if a good starting point would be to see if you can arrange Pediatric Occupational Health to visit. They will give her tools to deal with day to day practicalities and might themselves signpost to therapy.

You must find a way to have a break from time to time or you run the risk of a full unravel.

I also think this age is incredibly difficult even without your daughter's extra challenges. Teenagers can be ghastly. This behaviour won't last forever if you can bring yourself to stop enabling it.

I feel for you I’m up and down like a yo-yo some days but could manage the studio. Sorry different situation.

I'd be hard, I would tell her the whimpering means she gets nothing, she's not allowed to ask unless it's desperate. So harsh, but having been in absolute agony myself, I had to realise that actually, I HAD to help myself because there were times when nobody could, pure and simple, life goes on. I know I'll be crucified for this, but she needs to read what you've said here, OP, particularly about when something is fun and interesting. You need to consider your MH and your other kids.

Is she getting psychological support OP? She really has learned to be helpless. You will do her no favours pandering to her. Is she like this at school on good days? I bet not. If you haven't already I would seek support from school. You know if you are being loving and fair or not - if she's pulling a fast one, do not cave in. Make her wait, or hopefully do it herself. Let her whimper in those circumstances. Don't let her learn that this gets results. Is she the same with DH? Make sure he follows the same approach as you. She needs to be told you are too poorly to help, when DH comes in. Does she have Covid too? I do feel for her OP but, you need rest to be able to cope with her real bad days, when she does need you💐

Mm..

It is shit being a teenager, it is shit being ill, it is shit having a fluctuating chronic condition so you never know what you can do one day to the next, it is shit having to rely on others, it is shit not being able to do the things your friends can do...

It is also quite hard to be a 'good patient', even if you aren't a teenager...

And it is really shit having to look after someone going through all the above.

I feel for you both tbh!

I am the 'can't do, needs help' in this household and it is crap for my OH sometimes!

If im sat on the sofa for example, I can't get off by myself, so if something is not within my reach (which as I have limited movement in my arms is not a huge area) then he needs to come find things, pass me things etc or get me up.

I've had to learn to prioritise, and to forward plan.

So when I move from wheelchair to sofa this evening after work, I will ask him to bring me all the sewing I plan to do, drinks, vape, phone.. and those will all be by me on the side table.
He'll stay with me whilst i get in the right position and get comfy.. and then he can piss off for an hour or so upstairs to play with his model trains or make dinner (he can't go out if im on the sofa though, not beyond a quick whizz to the shops anyway).

If I've had him fetch me all the sewing stuff though.. and then hes gone to do his thing, i won't then change my mind and ask him to fetch me drawing stuff or some other things - it's up to ME to pre-plan what I want to do!

On the other hand if he has pissed off upstairs and left the remote control where I absolutely can't get it (down his side of the sofa!) then yes I will ask him to come back down for that.

Sometimes it does mean I have to suck it up and wait, last night he had to take my dad to the pub, so he was out 2 and a half hours, and about ten minutes in I realised the boiler was off, and I was getting colder and colder (and I do not regulate my own temp well so I don't warm up easily). I can't put on a jumper, I did drag a blanket over me (I was in my chair not on the sofa) - but I didn't ring him and tell him to come back!

You have to talk to her properly, explain there is only so much you can do, you get ill too, you understand elements of her life are pretty shitty, but treating others like skivvies won't help her in the long run.

Avoiding doing things that she CAN do means she actually runs the risk of losing MORE ability.

Sounds like she's not managing all of her Activities Of Daily Living.

I'd speak to your GP, or her consultant about getting an OT referral and some support for her to manage her feelings about her chronic illness.

And I'd give you a big bottle of gin, on a tropical beach, on your own.

OT therapy sounds great. She does need support but needs to be able to cope by herself too, or at least with a carer etc. She is also being a teen.

I sort of know about this as I have a DB who had chronic asthma as a child - almost died a couple of times. He could be a bit 'can't do this/that' due to his asthma including once when I was at home alone with him not being able to find his nebuliser or work it (he knew exactly what to do) so he had to go to hospital. After that I spoke to DM and said 'I need to know what to do in case this happens again' and I was shown what to do.

I don't think this is a terrible confession. There is a reason why nurses and lots of those int he caring professionsal develop black senses of humour - because it is tiring and grinds you down.

Also, just because your daughter has a condition, it doesn't stop her being a teenager and somewhat self absorbed. Add what sounds like a pretty horrible condition on top and I think you've probably got the perfect storm for teenage self absorption.

I imagine it is something that is hard for all the family to cope with. I have not advice, but just to remember are doing a great job on top of being sick yourself.

Leaving aside the frustration you're currently (justifiably) experiencing , your child is going to need long term support and care. Bad days can be extremely bad and good days can be bearable. She is probably feeling angry at her body and taking her frustrations out on you so I'm hopeful that taking advantage of you will die down. The reaction when her friends come to visit is due to the release of serotonin and dopamine (feel good chemicals in the brain)
On a practical level , you should apply for DLA in order to be able to access support services she needs. It is DLA for children or young adults up until the age of 18. There is a care component which could support physio and counselling. There's also a mobility element if you need to get any adaptions on your car to help her get around. Do apply, they certainly don't award it to just anyone. You will need medical evidence etc so do it now. It could take quite a while to come through.

Situation sounds very hard for both you and your daughter, OP. Coping with a disability is often emotionally traumatic for both sufferers and carers. And teenagers are hard work. There's no easy answer. Resentment is poison, and it's easy to let it build on both sides. I hope you and your daughter find a way to rebalance and mend your relationship. She does need boundaries. You can only do so much for her. You will always have limits. All her wants are not needs. But she may have unmet needs, and maybe that's why she's acting whiny. She may be starved of something (emotionally). She may be worried, and playing controlling games to test how far you'll go for her.

You would both probably benefit from some kind of relationship counselling.

She is behaving very badly. And I say that as someone who is a wheelchair user with chronic pain and who also needs a fair amount of care.

Everything Widdlin said above. But right now your answer needs to be a firm 'no' and she needs to get the hang of the fact that she can make her whimpering sound at high volume all day, because she is quite intentionally using that to get you to do what she wants. The answer today is that you can't. You're ill, you're as badly off as she is, you don't have a magic wand, and she will have to do what she can. She can get herself to the loo, she can get herself food and fluids, she is ok. And living with a disability on really bad days that IS sometimes what you have to cope with, that you do just what you can do in that hour. Passive aggressive texts at you need to get deleted or ignored and not rewarded either.

What you need long term is a therapist for her who can do some serious work around her independence and learning to cope with her disability and how she manages her needs with carers, because whimpering at you is something she is way too old to still be trying and these are not habits that are going to help her cope well as a disabled adult.

Hope you're feeling a lot better soon

That sounds really tough. HNRTT but does she have a firm diagnosis and is a treatment taking place?

It sounds like you have an unenviable juggling act between help, empathy and encouraging self-reliance and not crying wolf. Your teen is probably grieving for the normal she has lost and you are probably grieving for that too. Even healthy teens can be incredibly self-absorbed.

I'd be tempted to welcome the change when friends come around because that time with friends will help and you would want her to enjoy some things even when it might be infuriating. Some fluctuating conditions are like that. The alternative of being stuck in a disease 'prison' without a break would be worse.

There probably is no wrong except at the extremes so anything along the spectrum of helping, pushing back when necessary, biting your tongue sometimes and keeping up a dialogue during difficult times is probably helpful. Other PPs have made suggestions but perhaps when the stress and angst levels are lower, try to keep up a dialogue and ask what she can do. Try to talk as much as you can about non-medical things that you would have if this hadn't happened.

Good luck.

You aren’t being unreasonable and it’s not a terrible confession.
You are human. She’s a teen who happens to be disabled but ultimately she’s a normal teen and they can be absolute arseholes. It’s ok to feel worn down and frustrated. Sometimes she’s being unreasonable as all teens are. Don’t give yourself a hard time and just do what you think is reasonable. You know her best xxxx

I think you should trust your instincts here and when you know she’s crying Wolf respond once with ‘You are capable of doing that yourself’ and, if she starts with the Greek tragedy act turn up the volume on the TV/music/your headphones.

Gosh you must be a perfect parent @cornflakedreams

How lovely of you to dump on the OP. What stellar empathy.

I kind of understand where you are coming from OP, I have 2 teens with additional needs, the eldest is similar to your dd, is often unable to move around much and often in pain but I find it frustrating because if she had something exciting planned she would battle on and do things but when it comes to the weekend she’s suddenly in too much pain to do anything. I often do feel like a slave, running backwards and forwards sorting her food etc, then I have her sister who is severely autistic. Dd1 is 18 and wants to go to uni in September, I keep reminding her that I won’t be there to bring her food and that she will have to cope on her own. So I do feel your pain and frustration, it’s not easy.

OP, when she's in hospital does she get waited on hand and foot like this? I bet not.

She can have a hospital regime at home. Meals at certain time, drinks at certain times and a check-in every two hours. As soon as she gets out of bed to raid the fridge or freezer then she's on her own.

Try texting her something like "I feel absolutely terrible, can't move, please could you bring me a drink?" and see whether that surprises her out her demands.

@MelCat

I understand why you probably want to be vague about your daughter's condition, but is there an underlying organic cause or is it functional (FND)?

If it's the latter then your daughter needs to be in a supportive rehab programme to help her learn how to function with her condition. Yes she will have bad days, but she needs coping strategies of how to manage these. There may be OT options which will increase her independence.

If it's the former then it sounds like she still needs a supportive rehab programme, but you may need it to be more through a neuro-rehab unit.

Both is the answer to that, there's more than one thing going on. In fact, there's probably just one thing going on but research is a few years away from pinning that down and that's another topic. She's had OT assessments, has counselling, has neuropsychiatric sessions to help her to accept that there are multiple brain-body connections that have just gone haywire alongside the other thing, pain management... there's lots

The special needs board used to be great for this kind of support OP. I'm not sure if it's as busy nowadays.

Also - you need respite (appreciate you may not get it :( ).

Teenager = self centred and demanding a considerable amount of the time (we all were) Teenager+ serious fluctuating health issues+ unwell parent and siblings= utter nightmare, but hopefully a very temporary one.

I second advice that in the longer term, OT/physio and therapy to help her come to terms with/manage her condition is a must. Accept all and any input going. Is there a support group for young people with her diagnosis?

I hope you are feeling better soon OP and won't insult you by saying "Get some rest" because carers can't be ill, even when they are.

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

A. it's not at all terrible. It's life-affirming and great parenting! you are recognising her and treating her as what she is - a stroppy teenager!

B. as to only saying it here because we don't know who you are. Yes, absolutely. That's what this place is for!