Just a small pity party

Thoughtsforcoffee · 2025-06-10T12:57:49+00:00

Ugh. been with such a lovely guy for a few years and he’s stuck by me like a rock through some tricky health issues. Just as we thought things were getting easier, my dd has been diagnosed with a life changing condition and overnight I’ve become a carer full time not just a parent. She’s had to come out school and it’s 24/7 care. He (let’s Call him Jake) has been getting more and more frustrated by my complete lack of free time (if I’m not at appointments with her I’m in the trenches getting up multiple times at night to do meds / help her) and it’s just fizzled out to a point where he doesn’t feel he gets any time at all with me at all and he’s unhappy. I get it, he’s not being mean or anything he just wants a partner who can be present and available and sadly I can’t be. Think I’m probably facing a lonely life being a carer and while wild horses wouldn’t stop me being there for my daughter, I guess I’m grieving an easier life in a different universe. No real IRL friends so just a bit isolated and needed to offload.

Girlmom35 · 10/06/2025 14:21

I'm so sorry. I have no solutions, just want to offer my sympathy.
It must be devastating when your child becomes ill and needs full-time care. Can I ask, is this condition permanent or is there a chance of recovery?
Regardless, I'm sorry to hear your relationship is so heavily impacted. Most parents find their relationship under duress when a child becomes ill, let alone when it's not even their child. On one hand I understand that every relationship needs time and energy to be sustainable. On the other hand I do think you deserve someone who will stand by you through thick and thin, and if he can't do that then maybe you're better off without him in your life. Your child needs all your attention right now. Someone who will take your energy and attention away from her is not someone you need in your life right now.

Could you find other sources of support? There are often support groups of social media groups for parents of children who have the same illnesses. I just think you'll need to have people you can turn to if you're going to be a carer for your daughter in the long run.

Original poster

Thoughtsforcoffee · 10/06/2025 14:23

Thank you for such a kind reply. It’s a life long condition. He’s tried hard to be there and it’s just impossible with her literally taking up all my time, he simply never sees me 121 as I’m back to co-sleeping with her as her night time needs are so high. He’s lonely and unhappy so it sadly has to end but oh my gosh it actually hurts my heart ☹️
its a very rare condition so not many groups but their is one online one twice a month I join. that helps.

OP posts:

MounjaroMounjaro · 10/06/2025 14:26

Oh that's an awful situation for every single one of you. I really hope your daughter is okay - it must be such a worry for you. It sounds as though you have a lovely man there; I can understand his need to see you separately, though. I hope you can remain friends.

Original poster

Thoughtsforcoffee · 10/06/2025 14:29

I think being friends would be too hard ☹️he’s such a good egg and deserves a lovely life and someone who can be present with him and I don’t think I could stand by and watch him ☹️appreciate I’m jumping the gun but oh my gosh it would be hard as I completely adore him. he’s been so kind, so patient, so lovely and this latest bomb has just been one too many ☹️

OP posts:

Sassybooklover · 10/06/2025 14:32

Oh my goodness how sad for you and your daughter. I understand how your partner must feel, but equally your priority is your daughter. You're in a situation no one asked for, least of all your daughter. Unfortunately, as hard as it may be, you perhaps need to give your partner the opportunity to walk away. That's not a criticism of him at all, but if you don't have the time to give him, and he's unhappy, it's going to cause resentment on both sides. Tell him you love him, but for that reason, you have to let him go and lead a different life. Is there any support you can access? Respite for you? This would be your only other option.

PullTheBricksDown · 10/06/2025 14:36

Thoughtsforcoffee · 10/06/2025 14:29

I think being friends would be too hard ☹️he’s such a good egg and deserves a lovely life and someone who can be present with him and I don’t think I could stand by and watch him ☹️appreciate I’m jumping the gun but oh my gosh it would be hard as I completely adore him. he’s been so kind, so patient, so lovely and this latest bomb has just been one too many ☹️

You deserve a lovely life too OP. Don't forget yourself in all this. Even if your relationship ends, you will need support still. You can't be everything to your DD 24/7

Original poster

Thoughtsforcoffee · 10/06/2025 14:38

Thank you, right now I’m in survival mode so literally don’t get a chance to do anything really as I’m sort of completely lost in the world of her condition. I will always put her first, it’s just hard knowing it means he will need a different life from my chaos ☹️

OP posts:

daffodilsandaisies · 10/06/2025 14:43

Can I give a slightly different perspective - from sad experience.

Do whatever you can to keep this bit of yourself alive. You owe it to yourself, and you also owe it to your daughter - it is not possible to keep pouring from an empty cup.

i enormously regret not finding a way to have a respite day each week when we were in parallel situation. If I could go back, I would absolutely prioritise that. Are you eligible for short breaks? DLA? Carers allowance? We were eligible for 3 hours of care per day, which we could save up and use in a lump.

if this is for the very long haul you MUST find a way to be you, and not just your child’s carer. And I say this knowing absolutely how hard it is - I failed to do it and oh am I paying the price…

daffodilsandaisies · 10/06/2025 14:45

‘Lost in the world of her condition’ - I absolutely recognise this.

could you say to him - please, I love you, please will you help me to stay me, and help me not to drown? That will involve finding other care (inc overnight, sometimes) for your child, and I know how impossible that seems - but if you can ask him to hold you through that?

Original poster

Thoughtsforcoffee · 10/06/2025 14:46

daffodilsandaisies · 10/06/2025 14:43

Can I give a slightly different perspective - from sad experience.

Do whatever you can to keep this bit of yourself alive. You owe it to yourself, and you also owe it to your daughter - it is not possible to keep pouring from an empty cup.

i enormously regret not finding a way to have a respite day each week when we were in parallel situation. If I could go back, I would absolutely prioritise that. Are you eligible for short breaks? DLA? Carers allowance? We were eligible for 3 hours of care per day, which we could save up and use in a lump.

if this is for the very long haul you MUST find a way to be you, and not just your child’s carer. And I say this knowing absolutely how hard it is - I failed to do it and oh am I paying the price…

I’m so sorry to hear this, thank you for this. Right now my daughter only wants me and I can’t risk her getting stressed but going forward I hope to get DLA (application has gone in) and some caring hours but I know it’s hard to get just now.

OP posts:

Original poster

Thoughtsforcoffee · 10/06/2025 14:48

daffodilsandaisies · 10/06/2025 14:45

‘Lost in the world of her condition’ - I absolutely recognise this.

could you say to him - please, I love you, please will you help me to stay me, and help me not to drown? That will involve finding other care (inc overnight, sometimes) for your child, and I know how impossible that seems - but if you can ask him to hold you through that?

That’s what he’s asking for-
not as bullet pointed as It will make it sound here, but basically he wants (needs) a night alone with me at least once a week and a day ideally where it’s just us so he isn’t literally ignored or in a separate room those days. Right now I don’t think I can leave her as I’m so scared but maybe in time that will change but I fear it will be too late.

OP posts:

ThePoliteLion · 10/06/2025 19:34

Just sending you all my sympathy. Try to carve out a bit of space for you. No other advice really. I think your partner is lucky to be with you.
🌸

daffodilsandaisies · 10/06/2025 20:40

Again, speaking from painful experience, what will make you able to leave her is leaving her. Nothing else.
my ds only wanted us and was beside himself at the idea of anyone else. We lost SO much as a result of going along with that, but we went with it because it absolutely felt like the right thing to do (as it clearly does w you too). I couldn’t imagine leaving him with others. But oh how I wish we had, way way sooner than we did.
if this is lifelong, then you really will need - and this is a deep and valid need, not a want - someone who keeps you YOU.
I absolutely understand how impossible this all feels.

Original poster

Thoughtsforcoffee · 10/06/2025 20:52

daffodilsandaisies · 10/06/2025 20:40

Again, speaking from painful experience, what will make you able to leave her is leaving her. Nothing else.
my ds only wanted us and was beside himself at the idea of anyone else. We lost SO much as a result of going along with that, but we went with it because it absolutely felt like the right thing to do (as it clearly does w you too). I couldn’t imagine leaving him with others. But oh how I wish we had, way way sooner than we did.
if this is lifelong, then you really will need - and this is a deep and valid need, not a want - someone who keeps you YOU.
I absolutely understand how impossible this all feels.

Thank you for understanding ❤️‍🩹I’m sorry you have had to go through similar. I will really think about this as her Consultant has said something similar to me. It feels impossible to leave her right now but you’ve made such a good point.

OP posts:

daffodilsandaisies · 10/07/2025 11:54

How are you doing? I think about you, and all these painful challenges.