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?

OP, no advice, just solidarity as that sounds tough. I’m on day 3 of COVID, feel absolutely rubbish and am in no fit state to take care of anyone.
I think what you said to her was perfectly reasonable. Teens are naturally selfish beings so it’s a tricky time without having all the added health stuff. Could your husband have a word? It sounds lame of me to suggest but something my kids listen to the other parent more, depending on their moods. I hope you get some rest. Xx

I’ll try to type more later but I think she needs therapy to deal with her condition. It’s very common that people with long term conditions get attached to the ‘sick role’, which is not at all her fault but she does need help through it.

I was very ill for a long time at a younger age and I know my mum found me challenging at times. And I know my experience of being ill left me with life long issues I didn’t receive any help for.

* [Message deleted by MNHQ. Quotes deleted post] *

OP, it sounds utterly draining. It’s okay to think that. Very few parents experience what you are experiencing every day and being ill means you are absolutely allowed to feel a bit sad and exhausted. It does sound like you have to approach this from the point of view of her needing to be more independent where she can be and (dare I say it) a little less selfish, because some of her behaviour does sound very thoughtless. She’s old enough to know this.

She is MILKING it for all it's worth! Stevie Wonder can see that! That's a hard one to deal with OP and you ill yourself.

Just wanted to add that you may be eligible for some form of respite through your local council due to the level of DD's needs. It's obviously not an immediate solution but in the longer term could help to give you a bit of a regular break and time to focus on your other DCs. Wishing you a speedy recovery OP.

I don't think it sounds terrible at all OP. I have a family member who has similar issues but completely takes advantage of their parents. The parents are getting older and have health conditions themselves but this individual seems oblivious. They have been brought up with the whole world revolving around them and now they are an adult I'm not sure if they could ever change.

Another poster suggested some kind of timetable and I think that would be a good idea. Also some organisation and items to help her be more self sufficient. Having a caddy in an easy to reach location with essentials like a phone charger, bottle of water etc.

Have you told her how ill you are feeling? Does she seem to understand how debilitating that is for you? As she’s probably sadly used to being the ‘most ill’ in the family. There need to be some boundaries about what she asks for and what is delivered. You being ill is really highlighting that.

Can you bring her downstairs first thing in the day (then at least you arent having to keep going up and downstairs?) Put her on the couch, she can then shout if she really cant get up?

I just need a break. She was in hospital for a week, and I was sleeping right next to her on a chair. "Sleeping" is not really the term for it. As soon as I got home, DH had to go, then two days later one child came down with Covid, then the other, then me. DD will literally call or message me or just repeatedly shout "help" or "Muuuuuuum!!" round the clock, and I really do mean that. I got woken up at 3am by her yelling "help!!!" I stumbled downstairs only to find her in the downstairs toilet asking me to get her a toilet roll. They're literally in the cupboard right next to the toilet. I told her that and she said "so you expect me to twist when my back hurts? Great."

No more than you expected me to be available and ready to spring into action at 3 bastard AM!! It is grinding me down. This has been two years

It seems that anything mundane or requiring a bit of effort when she's in the middle of watching a film or chatting to a friend can be delegated to me and expected to be completed ASAP, but if it's fun, A novelty or anything she actually wants to do, there's no obstacle. She will make sure she can do it.

I think when you are disabled you can get full of utter rage that all your energy and resources need to be funnelled into the mundane everyday tasks - leaving you nothing left over to do something fun like watch a movie, or chat on the phone with friends.

It is very hard to be 14 and chronically ill. I was comparatively 'lucky' in that when I was a chronically ill teen it sounds like I had much more dependable energy that your daughter, but I still had noticeably far less than my healthy friends. I had different challenges that were at times overwhelming, and as a teenager the unfairness is very hard to deal with.

It is a type of grief in a way, as you grow and become ever more aware of the differences between you and your friends and slowly begin to realise that the future might well be a scary place. Your 'normal' friends just don't get it.

To be fair it's still hard to cope with in your twenties/ thirties so she does have to come to terms with it.

Can she access any counselling with a therapist who understands disability?

Does she know any other teens with the same condition or very similar?

Can you get any support yourself?

It's really shit OP, and I am sorry you and her are both dealing with this

It's incredibly hard for both of you, but she has to learn to manage her condition and know what her boundaries are on a given day. I have a DC with fibro and several other conditions - not as severe as your DD's - and it has been a struggle, but she has worked incredibly hard to come to terms. She's at uni miles away and has recently got worse, is now in a wheelchair 80% of the time and in pain constantly, but she manages independent living with some help from university disabilities support. She'll have a good moan over WhatsApp on bad days, but that's it.

Your DD needs therapy to come to the same point - might be different for her, but she needs to do what she can when she can and ask for help appropriately.

And you need support to come to terms with having a child with disabilities.

Meanwhile no, you don't have to be at her beck and call when you're properly ill with COVID.

@Strictlyfanoftenyears

Can you bring her downstairs first thing in the day (then at least you arent having to keep going up and downstairs?) Put her on the couch, she can then shout if she really cant get up?

I do, we have two living rooms, she's often in the one that has the games consoles.

((HUG)) hope you're feeling better soon! Thank god your DH will be home soon! I hope he's useful!!

As for DD, on days you know she's well enough, you need to get her told! If she wants looking after/help on bad days, she needs to do things for herself on good days & not take the piss.

I feel very sorry for her having all those things happen to her, I hope her situation is reversible!?!

But at the same time, she's a teenager!! Self absorbed, parents as slaves, lazy, - all the usual. She needs to be treat like a typical teenager at those times or you'll end up with a teenager/young woman who is unable to move forward in her life as an adult AND you being a shadow if your former self and 2 other kids/teenagers/young adults who haven't had 'their share' of your attention.

You obviously love her & care for her when she needs it, you need to put boundaries in place, for everyone's benefit 🌸

You might have done this, but have you had an OT assessment? Maybe someone external might help her see how to help herself more than you can. I’m not sure how you would go about arranging this, maybe through school or SS

OT is a GREAT idea

Probably missing the point but isn’t a sandwich lunch? Why does she need more food half an hour later? Besides that I understand how frustrating this must be for you, even when you’re not ill let alone when you’re poorly yourself. It must be so difficult running around after someone when deep down you know/think they are milking it, so no YANBU to feel pissed off and worn down by the situation.

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.

• * {Message deleted by MNHQ. Quotes deleted post} **

OP - can I just start by saying this sounds so difficult, especially for your dd of course - but also for you the main caregiver. I can't imagine how tough that must be. So firstly cut yourself some slack - you are human, not some kind of robot. You sound ill and exhausted and I remember myself feeling completely at the end of my tether and like I had nothing else to give and that was just when my dc's were young - none of them have health conditions like your dd.

I agree with the poster who said a lot of this is probably just tied up in the fact that she's the age she is.

My teens can be right PITA's and that's without the extra difficulties your dd is facing.

Could you maybe sit together and watch a film? Paint your nails together or just slob out under the duvet for a day or two? It sounds like a bit of attention seeking on her part but maybe she knows she's being annoying, feels the annoyance from you a bit and then acts up even more - it sounds like a bit of a vicious circle. She's probably confused and maybe quite scared about what's happening to her - being 14 is such a tricky, horrible age anyway.

Just wanted to give my two pen'orth and let you know I sympathise and am sending massive hugs to you and your dd

Ignore @cornflakedreams OP I’m sure they didn’t mean to be so snarky.

It’s ok to feel like you do. And it’s even more than ok to say that is how you feel today when you have COVID, feel like shit and have two other Dc with COVID. It sounds horrendous. I hope you all feel better soon. Rant on to us - it’s a safe space!

From what you say she is perfectly capable of doing these things but prefers you to be running adoringly around after her. This is not on, and whilst I know she has complex medical needs she sounds as though it’s a sort of ‘learned helplessness’ and she simply won’t help herself. Add into that she’s a teenager and they don’t hold back on the laziness anyway.

When I read your post I also read this as a bit of jealousy - you are putting yourself and ( importantly) your other DC ahead of her and her needs. AS YOU SHOULD but she doesn’t like it. Is she used to being the number one priority ? Are they younger? I wonder if she’s doing this as she MUST have your full attention?

Is she like this at school or even with your DH? Are you and DH in the same page with this so you can tackle it together ? I do hope so. If he comes home and starts the running around after her it won’t solve the issue.

Sorry - just realised I’ve asked you a load of questions - they don’t need answering just me thinking out loud.

I hope you get better soon, but you also need to change this even when you get better by the sound of things.

It’s not a terrible confession! You are completely worn down and it’s okay!

What happens if you don’t go to her (when you know she’s okay obviously)?

I hope you feel better soon.

Are you in touch with the disabled childrens team at your LA? You sound like you would benefit from respite. She might benefit from staying somewhere else for the weekend where she can see that it is unreasonable to ask you to wait on her hand and foot!

It's not a terrible confession, you just need more support.

I have one DD with bad hyper mobility syndrome and one with milder hyper mobility issues but a heart issue (undiagnosed as yet but just ruled out POTs). Both can have days when they moan about it and I understand their pain. I have it too and I am so desperate for them not to feel unheard like I was until my 30's but it does get draining. I have said to one of them this week already that she is in pain I know she is but she is going to have pain if she sits on her arse or if she is busy and it is so much better for her body in the long run if she can be busy and continue to maintain her muscles

It sounds like a nightmare.
Agree with everyone that Y definitely ANBU, but you do need firm boundaries and a definite but nice way of saying no.

What about saying things like, "well I've got time to look for/prepare/fetch (said item) in about an hour, but can't do it before then." ?
That might be a useful way to ease in the boundaries.