To ask you to please help Un-Fuck my life?

[PenelopeNitStop]

I'm a forty year old mum of one, married. Life feels it has fallen apart a bit.

I'm disabled and have been bedbound a lot of the time. This has led to my husband effectively being a single parent, on top of him having a stressful job. So he has ended up with depression on top of already having MS.

We are both so tired, lonely and can't see a way out.

We are just existing. We've got a cleaner, and family do our laundry. But it is more that our relationship is suffering as life feels so gruelling.

Also, I feel so lonely, and useless. I had to leave my old job on health grounds, but was brought up to believe that academically able women have a career. I haven't, so feel a failure. It's also so hard to socialise when effectively housebound.

Anyone have any ideas? Sorry for moaning.

I'm so sorry to hear this, you need good advice from people in the same boat. Maybe try some organisations like this. I'm syre they can offer you some really good advice. I have a friend with the same problems and yes it's really hard work xxxx
disabledparentsnetwork.org.uk/

I am academically able and gave up a good career to care for disabled ds. Sometimes I feel totally housebound (school holidays etc). The key is to spend time together (you and DH) doing whatever is feasible in your situation. So it might be a bowl of popcorn and a film on the couch. A dine in meal for the two of you rather than going out.

Would it be possible for you to get any help with going out - something like a carer who could take you out to socialise once a week?

Thanks for replying. I didn't know about the Disabled Parents Network, so will definitely look into that. The dine in meals are a good idea too. Not sure about the going out with a career because it's tricky being bedbound. But if I could get up, it would be fabulous.

Six - how did you cope mentally with giving up your career? It's so hard, isn't it?

Oh, OP, what a sad post! So sorry you're feeling this way. It sounds pretty miserable. I'm wondering if you are also clinically depressed? I'm not prying, lovely, but if you haven't done so already, can I suggest a chat with a sympathetic GP. Sorry I can't be of any more help right now. X

What sorts of things might you be qualified to do? I don't want to pry into details, but if I were bed-bound, for example, I would still be able to mark online as an examiner. Everything can be done via the laptop apart from attending the standardisation meeting, and some exam boards now have online standardisation as well, so I wouldn't have to leave the house.

Are there any jobs like that which you could do?

Could you take up distance learning? Something non-pressured, and in a subject that interests you. Just to keep the grey matter active, and to give you a sense of achievement?

Caz- yes I am. Talking to the psychiatrist this week. The morphine for pain makes the depression worse. The morphine has been changed now, so should maybe feel a bit better soon.

Newcross - I'm an ex psychiatric nurse. I could go into counselling but would have to attend training, which is hard to do from bed.

Saucy - I'm thinking of doing that. Perhaps a masters.

I think we're both just so down, that it's hard to make positive decisions.

It was hard giving up my career OP but o missed the Holstein terribly when I was working so being at home with them made it easier. The social aspect of working is what I miss the most. It can get very mundane when you haven't been out of the house for days.
I hadn't realised that you were totally bed bound. Would something like an open university course be feasible just to keep your mind active and give you something to focus on?
I went an did a university course which I managed to fit around my caring and it was the best 4 years I have had since giving up work. But obviously I can get around so your situation is a bit different.
If you want to perhaps you could consider volunteering to be a telephone helper for a disabled children's charity. If it is possible to do the training online / over the phone then you could do the actual volunteering from your own bed if needs be as all you would need is access to a telephone a few hours a week.

Perhaps also ask for your care needs to be reassessed and for your DH to have a carers assessment. If you could get enough care hours to enable your DH to have an evening off then he could go and do something for himself for a few hours whilst you enjoy a bit of different company. It might really help him to have something to look forward to doing each week.

Six - that is a bloody brilliant idea! One thing I a am shit hot at is listening without judgement (have to in mental health nursing). I really could do that.

Does anyone have any ideas on jobs I could train for at home?

Six - I am going to involve social services now. It's too much for us to deal with alone. I keep trying to send him out to the pub, my mum said she'll baby sit, but he is too knackered to go!

I don't know if something like this might appeal to you?

www.bbc.co.uk/news/technology-17114718

Oh gosh yes, please involve social services. I didn't realise that you hadn't already. Goodness knows you have done well to cope without a support package. I know the national autistic society have a helpline manned by volunteers from heir own homes but I'm not sure if you have to have a child with asd to be a volunteer for them. Im sure many other organisations offer similar though and with your background in psychiatry you would be fab.
Something like mind or the Samaritans or similar?

Or even the silver hotline thing that Esther rant zen is involved with?

Six - lots to think about. Thanks for taking the time to reply xx

Destiny - that is the most fantastic scheme. I will definitely look into that.

Thanks so much to everyone who has replied. It definitely made me feel less alone for you all.

What are/were your academic or personal interests before your physical limitations became so severe? I'd be thinking what can I pursue online - as someone else suggested distance learning, or distance teaching! Getting involved some kind of online volunteering or activism in the areas that I am passionate about. Finding something to do that I feel is important. Perhaps writing, a blog, articles for an online magazine, or creatively, if that's your thing. Are you interested in crafty things? I met a severely disabled woman who was running an etsy business making jewellery, for example. Also, personally, I know that prioritising self care/looking after myself has a massive impact on my mental wellbeing, when I've been unable to work due to physical health (thankfully it was temporary for me) things like getting my hair done, or having a massage treatment, really helped me feel better about myself. If you're similar, could you have a visiting therapist come to your house? I appreciate there is a huge difference between it being temporary physical impairment and a permanent disability. I had the hope that I might, and then would, get better. I expect in your shoes I would be equally struggling to accept the change in my circumstances, and struggling to see the way forward. It did affect my mental health severely, so as a previous poster suggested it would be completely understandable if you were dealing with depression, too.

As well as disabled parents network are there any support groups for your health condition that you could see if they have online discussion groups etc?

It sounds like you might feel guilty for not pulling your weight and leaving your DP 'effectively a single parent'. He's not, you're there. Ok so maybe you can't do the school run or pack lunch boxes but you are there, parenting alongside him. I agree, prioritise the relationship and maybe make time for date nights in - movie nights, nice dinner together, play board games together etc. You can even do those things in bed together on bad days. Talk and listen to each other.

Are there areas of running the household that you could help more with without needing to be physically mobile? I'm thinking domestic management tasks really - online shopping, organising finance and insurance admin etc. If you already do all those things, then give yourself credit for them!

Last thought, are there any devices or support that could help you become more mobile that you don't currently have, like someone else mentioned a cater/support worker to help you get out and about - even more straightforward things like adjustable bed/chair, walking frame, wheelchair or mobility scooter. Sorry if these things are just not practical for your situation I don't mean to sound patronising. Just wondering if there is any further social care/support out there that you could access. You sound really stuck and it's a horrible situation to be in.

Op, I'm more or less housebound and have so much sympathy for you.

Do you and DH have any friends at all? I find just chatting on the phone or online once a day to someone lifts my spirits so much. Most people really don't mind if you arrange to call them once a week or better still they come round for a cup of tea if you are up to it. One of my friends is very political so once a week we put the world to rights. Another friend loves music so she suggests a piece of music to listen to every few days and we discuss it afterwards. I make sure I do a sudoku puzzle most days and watch university challenge to hope there are at least one or two questions I can answer! I'm sure if you reach out people would be happy to help you as loneliness is the worst feeling and keeping your mind active is just as important as treating your physical condition.

Do contact social services and accept any help they can give you. You could think about doing some kind of distance learning. The Open University do various short courses that might be of interest but I think at the moment just having more interaction with other people would help you and your DH so much.

Lots of cross post sorry!

Samaritans volunteering does involve attending a physical Samaritans branch, as volunteer care and caller confidentiality are two fundamental principles of the organisation - no volunteer is ever alone on shift, as soon as they put the phone down there is another volunteer there to talk to and support them if they've had a difficult call, also no information about callers can be shared outside of Samaritans, at all, so talking to a caller outside of a Samaritans branch on your own phone line where you might be overheard would be a no no.

But, I expect there are lots of other organisations that provide support and work differently that you could be involved with from home. For example the online service 7 cups of tea is people from around the world providing an online active listening service.

Yes we do have friends that we see, but mostly speak to either on the phone or online. During the day, everyone is at work though, so pretty isolating.

Will definitely look into a lot of these suggestions. Thank you all so much xx

Would hosting a book club in your home work, or would that be too much for you?

Also, I think there are schemes where you can record books or news on tape for blind pp, would that be of interest? You may be disabled but you're definitely not useless!

Thanks, I have a good reading voice, so that is something to think about. It is very hard to make any arrangements to attend things. Bedbound means just that. Sometimes, even talking to others is too much, and I never know what my pain levels will be like on a day to day basis, which makes firm commitments hard. That's why I have to try to work around all this.

And what makes it so damn hard.

You've had some great suggestions already, telephone based support line/counselling sounds like something that could use your listening skills and really make a difference.

A couple suggestions drawn from my interests - art (there are loads of different mediums, I'd maybe pick something less messy like coloured pencil and work small) or writing (fiction or blog posts would appeal to me, but articles, paid work creating content for websites or social media).

I also like the idea of studying something that you are interested in via distance learning.

You are worthy as a person without having a career, it doesn't mean you aren't intelligent or prepared to work hard. It's just circumstances mean that day to day life has been challenging itself. It would be great for your mental health to find a way to do something you enjoy and find meaningful though even in a small way.

third - you have articulated exactly how I feel. It's about finding meaning in being me, not simply as a mum, wife, daughter etc. I agree with further study, and some volunteering from home. I love art, so will give that a go too.