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?

As difficult as it might be , if she's having a good day , able to make a sandwich, toilet herself, find her own remote you must tell her you are sick yourself. She must look after herself , you and her siblings to the best of her ability.
I would ask her what happens if you get so poorly you end up in hospital. Whimpering is an absolute no ( she's not an animal) .
It must be hard on her living with her condition but she must learn how to live with it .

Does your DD have an actual diagnosed medical condition Op?

You don't need to say what on here but if she has then make sure she is getting all the therapies from a team specialised in her condition, particularly if it's a complex condition. It's no good getting bits and pieces of help from different sources if she needs specialist input.
I speak from person experience with a relative who finally got to a specialist to get the appropriate help

I don't think people really understand life with a chronically I'll child. It's utterly relentless. Idk how many hospitalizations we've had with my now adult son. Thankfully it's been a very long time but nonetheless he's not at all independent he needs assistance for everything but the little things he CAN do we do.not.do.it.
Throw in some anger,manipulation and hormones and Covid and you have your situation. Your daughter is being very unfair and unkind to you right now. It cannot be easy to have undiagnosed medical conditions and pain but she needs to cut you slack-what happens if you say 'Daughter, I saw you get up to get your charger so NO I am not going to hunt for your remote-I am sick let me sit for a while"

Hope your DH is home soon and you can go to bed. This is crisis management territory and you need to get better and your DH needs to manage everyone else for a while.
My DS has life long health issues and he finds it hard when I'm sick. So that's something extra to work on with her therapist, plus the whining. At 15 she needs to start trying to manage her own condition and day to day living, not just saving energy for the stuff she wants to do, as understandable as it is.

@WiddlinDiddling

Of course the OP should be able to let off steam in a safe place - the fact the OP's daughter has a chronic condition does not mean the OP's own illness simply vanishes or isn't unpleasant and hard to cope with!

OP - I think you need to explain to your daughter that she needs to start being independent where she can - for example, she's perfectly capable of being in hospital by herself for some periods, she does not NEED you sleeping in a chair by her bedside 24/7, and if her chronic illness is lifelong she will need to get used to navigating hospital visits and stays - as scary as that is and as harsh as it may sound, hospitals can actually be a pretty good place for practicing being independent (she will also find that lying there whimpering and bossing folk around gets her nowhere!).

^^ This and also for many of the other pps on here.

I don't think I have anything of any use that I can add, as I think that anything I could think of has already been covered. So can I just give you my initial reaction to your O.P. OP. It was:

Bloody Hell OP I thought you were going to say something much worse than that! You have absolutely no need to feel bad about how you feel. You have a really nasty sounding bad case of Covid, and in reality you should be in bed with someone bringing you the things that you need, drinks, snacks, small meals, comfort foods, ice-cream (for the awful sounding sore throat), Paracetamol and Ibuprofen for your temperature and associated pains etc. Hopefully from 6.00pm that is exactly what will happen. If your DH wasn't due back soon, I think that if you had no-one who could have come and helped you (I can understand that even if you have parents near by, them being older it could be risky for them to come and help you - Covid really is the bugger that keeps on giving isn't it) such as a good friend, or sibling, sibling in law, etc then you might have had to ask someone official to help with the children - I am sorry if that is totally unrealistic, I do know that even getting a GP to see me these days is little short of impossible!

If I wasn't disabled and have several chronic illnesses myself, and if I still lived in the West Country, I would have loved to be able to come and help you. Even when you are over Covid (and remember it could take a while, so please, at least mentally, cut yourself some slack), I don't see how you can keep going under such stressful conditions. As a pp said, can your DD go for some respite care for a week or two every 3 to 4 months. I know that wouldn't solve much, but it would give you a little break, it would also give you something to look forward to, and I am sorry to sound horrible to your DD, but if she hated it it might help her realise that on her good days she needs to do much more for herself.

If you have read this far, thank you! I am going to say a little bit about some of my chronic conditions, just to give you some idea where I am coming from, but if I have ready said too much, then please give your eyes a rest, or go on to someone else. I am giving you these now in case you are stopping 💐

Some of my chronic illnesses are Parkinson's, Severe Arthritis (which is why I am wheelchair bound), Parkinson's and Fibromyalgia. Fibromyalgia is why I am usually bed bound, apart from my Arthritis pain, the Fibromyalgia (the one that some people still don't believe in, as at the moment there are no blood tests or anything that can prove someone has Fibromyalgia) is my one condition that gives me the most pain, frustration, and almost complete lack of energy.

My DH is my carer, and because of a mixture of my conditions he has to do everything for me. That means that although in someways our partnership and little team of two has brought us even closer together, our actual fully functioning marriage (I am trying to be coy here) is no more, which saddens me greatly and probably my DH too.

What I am trying to say (very badly I know), is that if your DD's problems are anything like my Fibromyalgia ones, where whenever you do expend any energy, it then takes a long time to replenish, much longer than the original expenditure of energy took, then she has my sympathy. Yes if something else comes up while I am still recovering from the first thing, depending what it is, a presumable rush of adrenaline can 'make' me more awake again, give and give me some extra energy, but then the slump after that is even worse.

Knowing all of that, living all of that, does not give me the right to run my DH ragged, and it does not give your DD the right to exhaust you (mentally as well as physically). Yes, she is young and I am an old codger, and yes I have had most of my chance at life, so my quality of life is no-where near as important as your DD's, and yes, she is a teenager on top of all of that, with raging hormones, probably periods, and maybe a fear that she will never have a boyfriend or get married - I hope and pray for her that she will be able to do the things that are most precious to her - so it wouldn't be surprising if she does worry about it, or if you worry about it for her, but even with all that awfulness that she is going through, if she doesn't learn to protect her dearest asset, her best friend (even though she might not realise that yet), the one who will always love her unconditionally and want the best for her - even when that person is on her last legs and wants to scream and shout at her - your DD could end up in a very, lonely, miserable and scary place, if she breaks her very dear mother.

So practically, my husband gets our meals and we eat them together (most of the time - if there is a sport on that he loves and I don't, then he will go downstairs and watch it there while he eats, I have a big, swish TV up here, so I can also watch what I fancy). Quite often he will choose to read up stairs with me, or we will watch TV or films together - luckily our tastes are usually very similar - but when he wants to be doing one of his hobbies, or needs to do housework, or go shopping (so in reality, everyday), he leaves me with a well stocked cold box, snacks that don't need to be chilled eg bananas, apples, crisps etc and a flask of tea or coffee.

I also have a really nice (if you can call them nice) commode right beside my bed. It looks like a cross between a dressing table chair and a nice (I don't like the word nice, but it isn't lovely or beautiful, just nice) dining chair, but with arms. It has painted white wood, with a coloured leather cushion for when it is not being used for it's primary duty! Anyway, having it right by my bed, with a toilet roll in my bedside table draw, and wet wipes, and hand sanitiser (and handcream as my hands get very dry), I can manage myself after I have peed, to get back into my contouring bed (a good idea if your DD really is going to have a lot of bad days, but hopefully she won't (that reminds me, if she is eligible, and it sounds like she probably is, don't forget to get the VAT off any physical aids, including the contouring beds), unfortunately if it is a number 2 my husband has to help me. I hope none of that was tmi, but I wanted to let you know what we do so that my husband isn't at my beck and call all day.

Although he is brilliant and I am so grateful to him, I think if I treated my DH like your DD treats you, I would either be divorced by now and in a care home, or he would have had a mental or physical breakdown, or maybe even a heart attack! My DH and my DC know that if I become too much of a burden that I want them to put me in a home; I try not to be too much of a burden to my DH not just because I want my favourite (and only at the moment) carer to be well and happy, but also because I love him very much.

As your DD is a teenager it is quite likely that she isn't aware yet just how brilliant you are, and how much she loves you. But she should, and needs, to be aware that she has to stop being so selfish, if she wants to keep her carer both healthy and happy. Lastly, of course, if she does want the chance of having as normal a life as possible in the future, she must push herself to be more independent on her good days. Good luck OP, you are in my thoughts - as is your DD.

By the way I started this just after your post at 5.00pm, so I am aware that things have hopefully moved on by now, that your DH is back, and you are tucked up in bed. Just in case you have read this far, big apologies if nothing I have said was interesting or helpful, and if I have managed to put my big foot in it (I am apparently good at doing that), I can only apologise even more. Please have a second bunch, you deserve them 💐

TurkeyRoast speaks much wisdom..

I'd also like to touch on something lots of people have mentioned..

Where your daughter appears to be fine in front of her friends.. and then not in front of you.

Yes, she may be taking the piss, but, equally she may be sticking on a brave face/masking pain in front of her friends, which she feels no need to do in front of you.

I do this, but it can't be done indefinitely!

I'd encourage her to be a bit more honest with her friends, and that is hard because some friends will flake out and disappear if its all a bit too grim... but also to remember if she can grin and bear it in front of them sometimes, she can also do so in front of YOU sometimes, so that she can get on with what she can do, when you aren't available.

There is a bit of an art to balancing life with a chronic condition and no one expects her to learn that immediately... but i DO think its fair to expect her to try!

You must remember that something like this has an major impact on the whole family, but especially then patient & main care giver, yourself.

I speak as someone who started getting unwell a little younger than your daughter, my mother & I struggled with our relationship, both as mother & daughter & patient & carer.
Like your daughter my condition varied at that point & it was hard for my mother to fully get that. Tbh it's taken 20 years & her own ill health to better appreciate my position.

However you must be firm with her, it's sad that she is suffering & you sound like a wonderful mum who is trying to do your best for everyone, but that must include you. She has to learn to live with her current circumstances & I've met many a patient who milks his or her condition, some just like the attention, some scared & lonely, some simply bored. Whatever the cause allowing it on more than the odd occasion helps no one, especially her. In a few years she will be on an adult ward where mum can't to run around after her, it shocked me.

At the end of the day you are allowed to also be unwell & however bad her situation, she has to wait sometimes, even if she's in pain.

Today is thankfully not that day, try to be firm with her & if she really doesn't get the message allow someone else to be the bad guy explaining why the world doesn't revolve around her. You can tackle the longer term issues around this po once you feel better.

Look after yourself

I’m sorry. That is a lot to deal with and I’m sure you’re usually very helpful and supportive but we are only human. I know there is some kind of metaphor about empty vessels and not being able to keep pouring it out without replenishing ourselves. Its hard to take care of everybody.

"Munchausen's syndrome". Eh? Behave.

Message deleted by MNHQ for repeating deleted message. Here's a link to our Talk guidelines.

Um, no. She has a diagnosed genetic condition with functional overlay. Y'know. Something they can SEE is wrong all wrapped up with something they know is wrong but can't pinpoint the source of. People with munschausen's want to be poorly and they invent illnesses for themselves and badger doctors and draw widespread attention to themselves. She hates hospitals, doctors, resents her condition..... I think you need to look up what it actually is before you cast it out there, "clear as day".

@TurkeyRoastvBubbleandSqueek

Thank you so much for your post. It was very helpful to read and I'm grateful you took the time to write it all out for me.

I don't have any experience of parenting a seriously unwell teen but I do have experience of parenting teenagers. I'd let her see you're at breaking point. Cry. You're sick and she's making you iller. You need to rest.

Sometimes they forget we're not their support humans and need reminding.

@SexiestDogWalker I'm so glad it was of some help, and I really hope that you got a good night sleep last night and can take it very easy today xx

Op, please can I just say you sound amazing and the fact you are struggling so much with covid too, unbelievable. You are doing a fantastic and difficult job.

Some thoughts, your dd doesn’t realise the impact on you so this needs to be dealt with in a very loving way. I suggest you sit with her and ask her what you could do together that was fun and a treat which you would both enjoy. Explain that you have been feeling really unwell and ask her to suggest things that might help you and ask what she could do to make things a bit better for you. Giving power/ agency to someone who has been so helpless can be a psychological boost to them. Make sure all decisions about what she eats, wears and what she does are hers where possible. Come up with a plan of action where she has a say in what you do too. For example, tell her that you would like to do more exercise and what does she suggest? Show her the gym and swim schedule and ask her what she could do while you are gone? Make it a treat for her every time she agrees something for you so she learns that she gets rewards every time you are able to do things for yourself.
You heard of the saying, put your own oxygen mask on before you help others. No example could be clearer than this one. You need to prioritise your own mental and physical well being before anyone else’s.

Draw up a timetable which she has a big say in, factor in everyone’s needs including your own. Give her responsibilities. Give her lots of praise for achievement. You need to change the dynamic from negativity to positivity and hope.

Find your sense of humour again, tell her that you both have lots to look forward to. What are her plans for the future? Does she want to go to the beach/ go horse riding? There are possibilities with the riding for disabled and lots of clubs and societies out there online etc for people with different needs.

The important thing is to include her and value her contribution and help, all your dc need to help out it needs to be a family team effort. Teach her how to use the washing machine, make basic meals, all life skills she will need for her future. Let her know that you are there to support her to learn to do things herself as you are not going to be around for ever.

In your timetable make sure you have a designated ME time, explain this is vital for your own health and happiness and ask her what you can do to help her and what she can do to help you in return. Give and take. It has to be give and take from now on or it won’t be sustainable.

Good luck! Obviously wait until you are covid free before resuming your gym membership

OP is there a “normal”range of function for her underlying genetic condition?

Has she got goals to work to in terms of improving function?

Obviously with a functional overlay the aim is to reprogramme the brain (software not hardware problem) so that it learns not to send out the wrong messages. Does she have a clear idea of what she can do without causing damage? You don’t want the functional overlay or underlying condition to hinder recovery/maintenance of the other.

As I mentioned it is hard when there is a functional overlay on top of organic problems, but there should be a clear plan.

Can I also advise to be very wary of her use of social media (I’m not in the tics caused by Tik tok), but just there are some influencers (including teenagers) whose accounts will not help.

@MelCat

OP is there a “normal”range of function for her underlying genetic condition?

Has she got goals to work to in terms of improving function?

Obviously with a functional overlay the aim is to reprogramme the brain (software not hardware problem) so that it learns not to send out the wrong messages. Does she have a clear idea of what she can do without causing damage? You don’t want the functional overlay or underlying condition to hinder recovery/maintenance of the other.

As I mentioned it is hard when there is a functional overlay on top of organic problems, but there should be a clear plan.

Can I also advise to be very wary of her use of social media (I’m not in the tics caused by Tik tok), but just there are some influencers (including teenagers) whose accounts will not help.

Hi,

She doesn't use tiktok and her tics predate the phenomenon. She has WhatsApp to talk to her friends, but she's not on Instagram or Facebook or anything.

The genetic condition she has is generalised dystonia. The specialists can't agree which symptoms are that and which are functional.
She has constant tremors even when asleep (albeit lesser) so they're sure the tremors are dystonia. As they are with the locking into position and the tics and fatigue. They're not sure about the incontinence and complex regional pain and the other things. She's had tests which show nothing structurally wrong with bowel and bladder but also shows inactivity and over activity at the wrong times. Because specialists can't agree what's functional and what's not, they also can't agree on a medication plan. Its frustrating and horrible and the only advice I've been given as her main carer is to support her and try and keep her active on good days and don't push her too far on bad days. I do my best. Being diagnosed with this and having it investigated during the pandemic and lockdowns hasn't helped with proper care either

OP it all sounds so incredibly tough for you and your DD.

Just a thought I have lingering based on my own experience.

I know her condition is real, and her pain must scare her a lot.

I'm wondering if she has been online and joined any chronic illness groups on fb/reddit etc. These usually end up being a meeting place of doom. With tales of how you cant do anything, how you will get worse, how you must protect yourself from any excursion and you need extra mobility aids and treatments to live.

Its a race to the bottom, who is the sickest of all, who can definitely be the poster child for the condition and need the most care. And then the other posters either fawn over them or are in competition to say things like "well my back is so sore I needed DM to get loo roll out of the cupboard"

I was trying to find out information about my illness but found pages and threads about "chronically ill warrior's". I know had I been in my teens I wouldn't have seen through these for what they are but assumed this was also now my identity.

I then joined a local group about my illness, there were about 20 people attending. 15 of them moaned and groaned about how they couldnt do this or that, every workaround was refused as unacceptable. It was an absolute shit show of moaning and trying to outdo the next person. Oh you take 10 tablets I take 50, I take 100. Madness!

5 of us escaped into a splinter group and now see each other a lot, to celebrate what we can do, yes we have limitations but we can still do a lot and enjoy it.

So just wondering if you should maybe check her social media incase she is getting any ideas from there.

And then maybe see if you can find a positive local group to find where she can see that life is still very much worth living, even with a condition.

I have an autistic child with various other disabilities, he’s 12 and he has milked it before. I say ‘it’s a reason, not an excuse’
So her illness is a reason she’s stroppy and in pain but it’s not an excuse to treat you like a skivvy.
Honestly I wouldn’t put up with it, I’d go crackers.

I’m sorry I wouldn’t put up with it either. I wouldn’t be treated as a skivvy. You need a board meeting with her.

OP i have neurodiverse kids no where in realm of your caring responsibilities but I found having my own counselling session once a week helped me cope. I could offload, they suggested strategies.

@70sDuvet I'm aware of these Reddit pages, having searched for online support for myself regarding her condition. Madness indeed!

I'm on a few Facebook pages that for both carers and people with the conditions and they are very supportive and encouraging. They don't make you feel like a bad day is a failure, but they won't let you feel like staying down there is an option either. I share a lot of that with DD by showing her and talking to her about it. She also has contact with kids at her school who have various debilitating illnesses. One girl (unsure of diagnosis) has a fluctuating condition like her. One day she'll be in a chair and the next she'll be walking with a stick. Sometimes you'll even see her without the stick, but that's normally followed by a few days in the chair. Ever so similar to DD. It's hard for DD and for her friend as it seems the more they do, their body and brain rebels against them and punishes them for it. I can see why they think this way and it's really challenging to persuade DD into a different way of thinking sometimes. I feel like I actually get even more punished for trying!

I have an autistic child with various other disabilities, he’s 12 and he has milked it before. I say ‘it’s a reason, not an excuse’

Thank you for this, this is the feeling I've been trying to articulate with my autistic DS2 (who does have struggles, absolutely, but also sometimes just doesn't want to do shit - the trick as his mother is learning to tell the difference)!