Sorry, it’s long and I’m a bit scared.

[Paupersgrave]

I’ve never been rich but I have never been struggling as much financially as I am now. I am not looking for anything from anyone so please don’t think that is why I’m posting. I just need to get this out of my system without being told everyone is struggling. I’m well aware of that.

For background I am a 50yo disabled mother to two ND kids. I’m still with their DF (48) and he works FT in healthcare but is awful with money and is always getting into debt but not with frivolous stuff just like shopping top ups or household emergencies. We live in a 2 bed house in central Scotland so my DS (16)has to share with DD (10). Both kids were born before I got sick - just getting in there before the reproductive gatekeepers turn up. We expected to be able to move to a bigger house but didn’t expect both kids to have disabilities or prices to get so high so quickly.

I was in receipt of disability benefits for me but my DH retrained and earns too much and so they were stopped (He’s band 4 so 30k before tax pension etc. ) The government cured me of my MS during my PIP renewal so I lost that too. I returned to university this autumn to do a masters to try and find a way to earn and contribute in a way that works with my failing mind and body (MS). I get a pittance of a student loan, some of which I have to use to pay my fees top up, so I end up with £50 a week student loan to put towards bills, food, fuel, insurance, study costs etc. I spend more time looking for appropriate wfh jobs than studying because things are so tight.

Where are these so called work from home jobs the papers are moaning about? I’m not finding anything I can do alongside caring for my disabled kids, my studies and looking after my own stupid broken fatigued body. Everyone wants people back in the office or on the phone and I can’t do that as my kids can’t be quiet in the background. As my partner earns an ok wage (30k) I’m not eligible for any financial support from the University. I’m now in danger of having to cut back on the things my kids love doing (social club things for disabled kids sadly not free here) that their CDP payments are supposed to be for, to pay for basics.

We were previously very fortunate in securing a good fixed rate utilities deal before it all got very expensive a few years ago and that ended in July so now our utilities bills have more than trebled and that’s without the heating on and the summer light nights.

Our car broke down this week and then we got a puncture after leaving the repair garage and now our dog got sick last night but the PDSA don’t consider a UTI a life threatening emergency so I have to pay for her to go to the very expensive weekend emergency vet and they won’t set up a payment plan - it’s all upfront. She is peeing in the house. That too is costing in extra cleaning products. Our microwave died 🪦 last week.

I’ve gone through our monthly spending and have cut out everything we don’t need. No tv or music subscriptions, very basic internet, cheapest phone sim. No nights out, no take aways. No treats. I wear clothes from 20 years ago. I don’t wear make up or cut my hair. My DD wear charity shop/vinted clothes and my son has to wear a specific kind of joggers and T-shirt that thankfully we stocked up on last winter due to his sensory/familiarity issues. I’ve sold what I can of older clothes on vinted. I don’t know where else I can cut back.

I’m not looking for help I just want to rant about how people like us are expected to survive right now and that’s with me recognising we’re actually not that bad off. It scares me how people who aren’t as privileged as we are survive. We have a home and an earning family member, we get some disability money for the kids. I’m dreading Christmas. It shouldn’t be this hard.

OP, that sounds like shit. No, of course life shouldn't be that hard.

Are you positive you can't get any more financial support? Grid you appeal the PIP decision? Are there other benefits you should be claiming? Please speak with CAB (or Scottish equivalent) to see if they can help you secure a little bit more money to ease the worry.

Have you got time or energy to volunteer anywhere? That's often a good way to find a part time WFH role.

I wish you luck. This sounds desperately unfair and draining.

Im sorry this is so hard for you. First of all- appeal for PIP. Fightback 4 justice ( on FB or internet) are a charity that help people exactly like you appeal and have very high success rates. Scope is brilliant for disability rights and Stepchange for anything financial.I would ask if your uni has any financial support for carers rather than your own disabilities as they are less likely to take wages into account. You are right, it shouldnt be this hard. I hope things get better soon.

Definitely appeal for PIP. Get advice from citizen’s advice or one of the fb pip groups. I think I read that most people who appeal get it.

Have you spoken to any MS or disability charities? I have a similar ish condition and the charity for people with my condition are very good at guiding people through appeals

(Although disclaimer I don't personally claim it as I find the thought of the whole thing so stressful and stress makes my condition worse)

Funnily enough you are the third or fourth person that I have heard about who is on a not too bad income. But it is just people like yourselves who seem to be struggling the most. You fall out of the remit for help in many areas but are expected somehow to survive without just a little help that would help so much.
They are all doing the very same things that you are doing and it is still not enough.
Do contact your energy supplier as they can set up payment plans to help or maybe even give you a one off voucher to help with costs. Check on Turn 2 us or Entitled to to make sure that you are getting access to benefits that you should be getting. Maybe apply for a bursary with your education provider. Appeal your PIP being rescinded by using help from Benefits and Work who are the experts in giving the appropriate advice to ensure that you fill in forms correctly and win appeals. Your local council also offer help from their hardship schemes.
Your frustration is very real and worrying and I hope you turn the corner soon and that life gets a little easier.

Just giving you a big hug. It sounds difficult and tiring. I have no real advice but just didn't want to read and run. I hope you can appeal and get a positive result. And I would second seeing if your council has any hardship funds.

Sorry it is so tough OP.

Can you say a bit about your skills and fear you used to do, to help people suggest things.

I just wanted to say I hear you and it's absolutely rubbish.
Well done for taking to steps you have so far.

I would suggest looking into LDN to help with MS symptoms as everything is extra hard with chronic ill health. There's a great Facebook page and the prescribing chemist is actually in Scotland.

First of all, I completely understand, we’re in the same middle of the road, too wealthy for help but struggling! I don’t understand a few things though, disability benefits are not means tested. Why have these stopped? If you have a medical diagnosis that prevents you from working how is it possible these have stopped? You say you have ND kids, is it disabling? For example my son has autism, can’t function at all, others with same diagnosis holding down FT employment.

Can you claim DLA/PIP/carers allowance on behalf of your DC? What about UC for you? (Sorry if I’ve missed updates.)

And agree with PPs, appeal your PIP decision. Sorry you’re having a tough time.

OP as you're in Scotland, you can submit a new application for Adult Disability Payment (and Child too if you think either of your DCs would qualify) as all disability benefits have now been transferred. Having dealt with Social Security Scotland, I can tell you the process was a lot kinder than applying to the DWP. They don't use third party assessment services and will look at evidence from your GP etc. It might be worth submitting applications for all three of you and the payments aren't means tested. You can get someone to help you complete your claim too - they have advisers to help face to face, online or over the phone. I don't work for them but I receive ADP. They are definitely kinder - I had a letter recently advising I'd been overpaid by £25 for the Scottish Child Payment and although they were entitled to reclaim the money they weren't going to and the matter was closed!

You make not want to do this, but could you forget about university for the moment and work from home during the day while the children are in school, so they don’t disturb you when you’re on the phone?

Start a new claim for ADP for yourself.

Take it all the way to a tribunal if necessary

It took me eleven months to get PIP (as it then was) but it's been worth it.

Can you maybe use your living room for you and your husband to share? Giving your kids a room each? That's quite important given their age difference and one being a boy, the other a girl. Or partition in some way.

I'd also look into whether you are claiming all that you are entitled to

Absolutely second everything that this poster has said, I work for social security Scotland and can absolutely say it’s a kinder system, the Local Delivery team can help fill in your disability application form, you can chose to have an appointment via video, telephone, in a local venue or your house whatever is most comfortable/suitable for you. Please seriously consider doing this for both yourself and children as the funds you could receive would really make a difference. Sending you love and sorry that things have been so difficult for you x

Try again for disability benefits, the system is almost designed so you have to appeal.

Ask on local Facebook pages for a microwave. Around here a lot is given away to people in need. You might also be able to get some children toys/ clothes.

Partition the larger bedroom for the kids.

Personally I'd be looking at rehoming a pet if I could.

So sorry it's very hard for u.

Agree with Redannie & Rainbow some very good advice there. Do your children have DLA? Also I wondered do you have a local MS society who could provide any advice or support on finances? Could you or your other half apply for a local carers grant at all that isn't means tested? This may provide an amount for you to spend on something that would benefit you at this time. Good luck

If you reapply for pip it would now be the Scottish disability payment. It works totally differently to pop in that they are looking for you to qualify, and not trying to make sure you don't get it. My best friend was on the roll out team and she said she's been making payments to people who've been denied pip for years.

I know it not a lot of money, I'm on pip (mr care, he mobility) and it's just over £5000 a year but it sounds like that would make a big difference to you right now!

Just to add to the others, it isn’t fair and you are doing so so well in trying to make things better for your family. Is it worth contacting one of the MS Scotland charities to see if they can offer support, I’m pretty sure JK Rowling was heavily involved in one and I know they offered help before,

Are you sure you don't qualify for universal credit if you have two children with qualifying additional needs the earning threshold is much higher.

That sounds terrible OP and no, it absolutely should not be that hard.

I'm not sure if this will be helpful but I watched a talk given by an MS sufferer who represented this organisation https://overcomingms.org/

Have you got support from any caring organisations? Like https://carers.org/ Do you have respite at all?

i’m so sorry to hear things are so hard 💐💐

Definitely appeal the PIP and check if there is anything you can claim.

Hello - i am sorry to hear of your worries and struggles, its definitely tough out there at the moment, especially with your life challenges on top of it too.
On indeed and linked in WFH jobs come up if you put that in the location field. May I recommend something like project management as there are lots of remote jobs in this space - look at APM PMF qualifications. Quite easy to work remote and work your way up.
In regards to studying your masters, good for you but if I am honest I doubt it will help your career opportunities. Put your energy into studying a professional qualification for the job you want to be in. For example I work in compliance so only study compliance or financial service exams that employers want to see on my CV as they are on job specs. That's my personal opinion but I also dont have a degree so it's kind of why I think it.
Call centre jobs might be a good bet for you from home too / customer service type roles.
Could your other half look at getting his salary up, I know health care pay isn't the best but if he moved internal and got a pay rise or worked in a similar field but different it could open up salary opportunities. I know some people like to settle in a job but I think its worth considering a move for more money.
Things will only get harder and thats the truth. Another option if you are a social person is something like Tik Tok lives / social media jobs. Oh another one that have alot of WFH jobs is marketing and tech. You could also look at virtual assistant jobs but they might get stressful if assisting someone so less flexible. Im just spitballing ideas at this point...

Have you applied for adult disability payment? It's social security Scotland. Doesn't matter what anyone else earn you may be entitled to it. You can apply online - please do it