To need support

[Handmethegin]

Where can I get help?
I look after my son who has additional needs, keep him safe, provide sensory input, therapy, no sleep, blah blah blah. I do this pretty much alone.
I work freelance from home in school hours and sometimes at night if needed. I pay our way.
I can manage that.
However looking after my DH too is tipping me over the edge. He has depression, anxiety, an eating disorder, IBS and inflammatory arthritis. He also works from home when he’s not sleeping. I spend a lot of time running around trying to look after his various needs, I have no one to talk to who understands, I can find resources for people suffering with these conditions but no resources for those living with them. Somewhere I can vent for moral support. A forum for the overwhelmed. My "me-time" is taking the dog for a pee at midnight. I'm starting to worry about my own mental health. Where do I go? Who can I approach?

So I don’t drip feed: we don’t have family who are able to help, my DH has been diagnosed properly and is actually ill not lazy as previous posters have suggested. We’ve been together for 15 years and about 12 of those were awesome.

I’m falling apart. I had 4 hours broken sleep last night. I’ve got to drive to school in ten minutes.

I would ask your GP practice if they have a carers group - some do.
Alternatively, google support for carers for your area.

I don’t even have time to attend a group. I’m after an online resource if possible. Somewhere I can vent at 4am and know that I’m understood.

www.carersuk.org/help-and-advice/get-support

Try the link above.
You can always call Samaritans. They will listen without judgement while you vent. They won't (shouldn't) give advice but they may come up with ideas/thoughts/options you may not be aware of or have considered.

Thanks, I rang the Samaritans a while ago and whilst they were nice I didn’t find the conversation terribly helpful tbh and felt pretty frustrated by the end of it.
I’ll look at the carers forum you linked to. I never really thought of myself as a carer, more just a woman with a lot on her plate!

Hello 👋 handmethegin you are dealing with so much at the moment. I’m pretty much in awe that you’re coping with all that alone.

My DH has fibromyalgia. We have a baby and another small kid. I work part time at the moment during my mat leave as money is tight and will go back to full time when the baby is 1. So I’m in a similar supporting role but less intense by the sounds of it.

I’ve never found anywhere for partners to chat and get support. It would be great to have one. Are you getting all the benefits support you can? It would be worth exploring possible allowances for your DC and DP. Sleeping so little over the long term would be difficult and you could perhaps look at buy in night time care or work less so you can sleep in the day. We recently got a cleaner although we are skint, it’s been amazing. People don’t understand hidden conditions and the mental and physical burden of calming and stabilising everyone, doing all the practical work. Plus I’ve struggled a lot with anger and disappointment about losing parts of my partner and big chunks of my life that I’ve had to give up due to just not having any time for myself. I see you, and I know what this all costs and what you’re sacrificing to take care of your people.

I forgot to ask if your DP getting any support? Mine has been doing a pain clinic programme. He’s had really great therapy that’s helped him cope and it’s really lightened the emotional pressure at home.

GreyClouds - you get it!
“the mental and physical burden of calming and stabilising everyone, doing all the practical work... anger and disappointment about losing parts of my partner and big chunks of my life...”
This.

I’m sorry you are struggling too. I’ve been filling in the DLA form in bits but I’m so exhausted and it’s draining making sure it’s completed comprehensively. DP was told to arrange private CBT (as nhs wait too long) and given anti-depressants, he’s on anti-inflammatories for his arthritis. Told to manage IBS with diet, which doesn’t work with an eating disorder. No one sees the big picture it’s very frustrating. He’s had another anxiety attack this morning and is now asleep. The problem with attending a clinic is that he needs to leave the house for that, and right now he doesn’t. He’s supposed to be visiting a friend overseas in January, I hope he’s up to going because it will give me a break, that’s so selfish I know 😥

Ok, here's our gin for tonight and a mug .

Hmm, it sounds like your DP is in significant distress and shouldn't be waiting for the mainstream NHS CBT. Is there a pain clinic at all in your area? These are the only service I've seen that have taken into account all of DH issues. It's properly holistic in our area. I prodded him to go to the GP to get referred and I'd really recommend it to others.

It sounds like filling in the DLA forms is an art in itself. I wonder who could give you a hand... Have you ever called any of those helplines, like Versus Arthritis?

Part of the shitness of all this is living with the fact that there is no prospect of a "fix". That's why we need the gin . But I have found that self care for myself is massively important. If I'm happy, DH is happier. Do you have a sense of what things would make life a bit better? Practical help like cleaning and chores? Emotional support like counselling for you and your DP? A social life with mates?

Fingers crossed your DP can travel, I really get needing space sometimes.

Thanks Grey Clouds, I could do with that gin tonight.

Yeah the carer's centre helps with DLA forms but I want to do it on my laptop so I have a copy (for when they lose it) for next year that I can amend instead of filling in from scratch.

Tonight DH's anxiety has decided the engines are going to cut out mid flight if he goes away. It's all paid for. I really need him to go. I need this break. I'm currently in DS's room simultaneously doing the bedtime fiasco, working (working nights now so I can have time off over Christmas and still eat in February), and trying to calm DH over WhatsApp. I can't even shower because the bathroom light switch has broken and of course it's me who has to fix it but I've been too busy today.

And no, there's no "fix" although it does come in waves and we have less bad times sometimes. People are constantly incredulous he's "still" ill, or that DS hasn't "grown out of" his additional needs. I'm sick of explaining myself and yet I want someone to hear me. Talk about ironic.

OP can I ask what his eating disorder is? My DH has IBS flared by certain types of eating but I've learned to manage his eating without him knowing (as I do all the cooking as it sounds like you do too) and its helped him massively including his mental health. I'm wondering if I can help you in some way if you're willing/able to give a few more details? I'm sorry I'm probably not much help otherwise as I have no experience of the rest of what you've said but I'll try And be of some small help if I can

Hi Dennis thank you so much, but it's not caused by his IBS. I think the psych called it depressive anorexia, basically he can't bring himself to eat when his depression gets really bad. He can go a few days with no real food, he was always such a foodie, it's really sad.

Oh I see I understand. That's such a shame I do hope you get some support,practical or otherwise. Mumsnetters are always here for a rant if you ever need it. Keep going you can do this