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?

@DefiniteTortoise @Chichimcgee

That's the challenge, isn't it? Finding where it's merged from reason to excuse and being able to call them out on it.

It really is. Captain Jack Sparrow said it best: there are things a man can do, and things a man can't do. I think of this often, and of how we need a third category of 'Can do but dont want to'

From my own long spell of illness came one bit of insight. When I found what I really, really wanted to do with my life, I found that energy surged through me and obstacles were overcome. Difficult to explain. I did an audit of what I had left and what I needed to be able to work again. And somehow things worked out.

Feel free to ignore and roll your eyes, but has DD had whole genome sequencing? It might help join some of the dots, although I realise it might not.

Slightly different but DS1 has a diagnosed genetic disorder but he also has a complex mix of other difficulties (physical, developmental and psychological) that aren’t fully understood and I’m hoping one day the further genetic testing he has had may give us more answers.

Functional overlay. Who’s going to look after her when she’s an adult and you’re no longer around? I’d be getting very tough with her OP. Condition or no condition.

Yours is not a terrible confession. And genuinely you are doing her no favours by spoiling her and doing too much. It must be really hard for you both, but she has to learn about the impact she has on others, just like any other teen. None of which means you won't do extra stuff for her because of her condition. It's about balancing everyone's needs and the balance seems off at the moment. But you are absolutely not unreasonable to find a balance. Although that will be hard. My sympathies.

@Imitatingdory

Feel free to ignore and roll your eyes, but has DD had whole genome sequencing? It might help join some of the dots, although I realise it might not.

Slightly different but DS1 has a diagnosed genetic disorder but he also has a complex mix of other difficulties (physical, developmental and psychological) that aren’t fully understood and I’m hoping one day the further genetic testing he has had may give us more answers.

I'd love to have it done. But we keep being refused when I ask

That is really disappointing and I can’t understand why. If DD hasn’t been seen by the genetics department directly it might be worth asking for a referral and asking them.

You say she has counseling, @SexiestDogWalker. I don't think it's doing her much good. What does it consist of? What is the focus?
The basic, fundamental principle that it is not healthy for DD to consider you an extension of herself should be implemented - it is not healthy from a psychological pov for her to regress into a childlike dependence or engage in such selfish and frankly narcissistic behaviour, and in the long term she has to change her attitude toward doing absolutely as much as she can every single day for herself. If you can contact her current counselor to talk about her behaviour, please do that, and ask that the problems you have outlined be addressed.

Next: family mediation.
www.familymediationcouncil.org.uk/

You need joint counseling with DD. DH needs to be in on it too. This thing has happened to your family member, and it will affect all aspects of family life. Some things have to change; the issues need to be examined, priorities identified, and decisions and commitments made. I know you may well feel better and more up to it when you recover from covid, but the situation you have described is not healthy or sustainable and no matter how well you are feeling in a few weeks, you need to make changes which will benefit everyone.

You should be able to talk to DH about the stuff you have posted here. You absolutely and urgently need a soft place to fall. You need to make that space for each other.

You and DD (and DH) need to sit down with a mediator and agree on what is and what is not acceptable when it comes to demands on your time and energy since you are the person at home dealing with all of this the majority of the time. You need to advocate for yourself in the safe space family mediation will provide for you.

DH needs to come up with ways to limit the burden you are carrying. There is no way you should have to give up on your gym plans (just one example) when there's another adult in the house to give you some respite. What else can DH take over to give you predictable and sustained time periods to yourself on a regular basis?
You should be able to get daily exercise.
You should be able to confidently book hair or massage or manicure/pedicure sessions for yourself knowing that DH will be there to take care of whatever is happening at home.
Also important, what can you all do together as a family - the other children shouldn't take second place.

There is a bottom line here, which is that you can't be expected to exhaust yourself mentally or physically. You need to be allowed to put on your own oxygen mask first, before you see to everyone else's needs.

You're clearly well aware of your daughters condition/s and symptoms, the issue is really with her behaviour.

Teens are masters of challenging behaviour and pushing boundaries, and with the added 'complication' she has of having to deal with a horrible medical condition and symptoms it's not really surprising that you're all struggling more than 'normal' teens/parents.

I think keeping the communication clear between you will be paramount here.

She's struggling with changing from a dependent 'child' to being a more autonomous 'adult', while still wanting the 'reassurance' of being 100% 'cared' FOR by her parents.

You (and her Dad), are struggling with the knowledge that she IS more 'capable' at times, but still wants to be 'cared for' at ALL times by you (unless it's 'inconvenient' for HER i.e when friends visit etc).

It might help you all to have more open, honest discussions about how she feels about actually BEING more 'independent'.

Also, you need to be honest with her about your other children ALSO being a 'priority' for you, because they ARE still 100% dependent on you as parents.

She also needs to have clear boundaries and consequences spelled out to her, and a single way of asking for 'help' when she needs it.
e.g

• Speaking rudely to anyone WILL result in her losing her phone and ipad for 24hrs, regardless of WHY she did it.
• No friends will be allowed to visit on days she has been physically 'unable' to do anything for herself.( When she is having a bad day, she'll not be up to having friends over anyway)
• She will call for you (nicely) once, and if you're busy, then she has to wait. Any repeated texts/moaning etc will mean her phone and ipad will be taken away for 24hrs .

Unless you live in a huge house where you can't hear her calling, there's ZERO reason for her using her phone etc to contact you.

You're going to have a tough tightrope to walk, but you NEED to let her know, in no uncertain terms, that neither you or your DH will accept her being rude/demanding just because she has a 'condition', because she's ALWAYS going to have it, and to accept her treating you horribly will last FOREVER..........

@SexiestDogWalker my youngest had a complex pain disorder in her wrist when she was 8/9. It still shows up when she is stressed. It's so hard because she knows and we know it's her brain but the pain is so real. When it was really bad she would scream in agony if something stroked against it. There were staff at school that openly said she was faking. Arseholes the lot of them. When it shows up now she can talk it away by telling her brain she is ok and can handle what she is worrying about.

[quote anothernamedoesntsmellsosweet]@SexiestDogWalker my youngest had a complex pain disorder in her wrist when she was 8/9. It still shows up when she is stressed. It's so hard because she knows and we know it's her brain but the pain is so real. When it was really bad she would scream in agony if something stroked against it. There were staff at school that openly said she was faking. Arseholes the lot of them. When it shows up now she can talk it away by telling her brain she is ok and can handle what she is worrying about. [/quote]
The person who manages the complex regional pain for her says the pain is real and it absolutely has a source. Could be receptors in the skin. Could be a herniated disc in the spine. Could be an old healed fracture, a slightly curved tooth root etc. He said there's absolutely SOMETHING, but the something shouldn't ever be causing that amount of pain. He said it's like when you make someone jump in the dark. You were never that scary, but they screamed anyway. Nerves scream and sometimes they keep on screaming.

I recognise this in myself. I have a variable neurological condition and sometimes find I ask people for things not because I need them but to know they care enough to do it. Thankfully I'm self aware so ask myself what my real intention is and to sort myself out if I can but I notice that thought pattern in myself. As a child my physical needs were met but not my emotional so I've always considered attention whilst ill as an expression of love (not suggesting that's your daughter's experience at all). It can totally be stopped but she has to recognise the damage caused and understand that she won't lose you just because it's a good day.

Do school promote her independence? I had a condition in my teens which required several large orthopaedic surgeries and while my parents absolutely did support me they were also bloody tough about making me get on with things myself if it was at all possible. If I’d lain and whimpered I have a feeling they’d have shut the door.

This will be tough but I suggest you speak with her various support agencies and start working on this, your illness has shown it’s absolutely not sustainable or acceptable. She may not like it or she might come to relish not having to be treated essentially like a baby.

I have a friend with a disabled DD in her twenties who is completely stuck in her emotional development. She does certainly have problems but cannot seem to find it in herself to want to grow up and enter the adult world and my friend cannot find it in herself to change either. It’s very codependent and unhealthy.

Get well soon and remember, she’s not coming to any harm right now if you let her wait or sort herself out.

@MatildaTheCat

School definitely do encourage and support her independence. She's very much afraid of failure so she will actually push herself to do more at school, oftentimes too much and then the fatigue kicks in which makes all other symptoms much worse. But they're excellent really.

It's not all her being a lazy little madam. Today her dystonia has decided to arch her back inward and keep her there for hours crying in pain. One big problem we have is that doctors can't agree how to medicate because they think medicating one will perpetuate the other. I think this is cruelty, she should have anti spasmodic or muscle relaxants and something for nerve pain, but I'm the one here all the time, dealing with this round the clock and they see her virtually for 20 minutes once every three months

My DD is 19, entirely housebound and it has affected her development so she’s more like around 12/13. I’ve got COVID this week and I’m confused by this thread - seems to veering from yes her illness is genuine to yeah she’s entitled she needs to pull herself together. This is why I don’t discuss my DDs condition with anyone other than other sufferers’ parents in support group settings; my DD wanted a full independent life and now she can’t even dress herself - it’s an awful grief that apparently neither of us are allowed to have.

@MatildaTheCat I have a friend with a disabled DD in her twenties who is completely stuck in her emotional development. She does certainly have problems but cannot seem to find it in herself to want to grow up and enter the adult world and my friend cannot find it in herself to change either. It’s very codependent and unhealthy - or beyond the control of either of them? I can imagine so many people saying that about my DD and I.

@StaplesCorner

My DD is 19, entirely housebound and it has affected her development so she’s more like around 12/13. I’ve got COVID this week and I’m confused by this thread - seems to veering from yes her illness is genuine to yeah she’s entitled she needs to pull herself together. This is why I don’t discuss my DDs condition with anyone other than other sufferers’ parents in support group settings; my DD wanted a full independent life and now she can’t even dress herself - it’s an awful grief that apparently neither of us are allowed to have.

Her illness is very genuine but her incapacity fluctuates, which is something she will manage with anyone else except me. Me she expects to run to every demand she has even when she's perfectly capable of seeing to whatever it is independently, and given that I'm really unwell this week, I could do without being considered household staff and only being asked for help when it's needed, not when she'd just rather not get up. I'm not invalidating my daughter's illnesses, I'm her carer but I'm also her mum and I know she's taking the piss out of me a lot of the time and I'm just venting because I'm exhausted and sick and there was nobody to care for me or even care about me being unwell and trying to manage two kids with Covid and one demanding to be served like a diva even when she can see to herself.

Staples that is true about grief you are not allowed to have I have seen that (not experienced myself).

Matilda you were the person who did all the back pain threads weren’t you? They were great, really helped me

Feeling any better today in relation to the COVID symptoms, OP?

@Zilla1

Feeling any better today in relation to the COVID symptoms, OP?

Not really 😭 Cough and all those delightful things are still there. I think I've damaged some blood vessels somewhere in my throat or airway as I keep getting bloody spittle when I cough. Pressure in my ears is making me feel like my eardrums are going to burst. I keep going boiling hot then freezing cold and i now can't smell anything and can't taste anything except slightly salty taste when I had a bite of buttered toast

Oh dear. Hope you feel better soon though I know it can take time and some people get worse. I'm told that COVID absence of taste is bad but some patients had a constant rancid taste which they thought was unbearable and led to weight loss. Pregnancy had a constant metallic taste up to birth which instantly stopped but no COVID taste-related symptoms, fortunately.

HNRTT but have you had a friendly chat with your DD yet or did you park that until you felt better?

I can’t imagine how hard your life must be, given everything that’s going on around you.
I would certainly advise you to contact social services about getting your daughter (or you) into respite care. You need to be running on 100% to be a full time mother, let alone carer.
Is she up to spending an hour or so out with a friend, gradually building up to a half or even full day?
You desperately need and deserve some quality time to yourself, even if it’s just to have a soak in the bath.
I do think your DD is taking out her frustrations on you, which is unfair -has she been offered any counselling or guidance from anyone?
It might be worth getting her a bed table (I’m thinking the sort you get in a hospital) and gluing Velcro to the things she uses the most so she can stick them to the table and not have to summon you every five minutes.

Take care of yourself first, your other DCs need you too ❤️❤️❤️