AIBU to ask WWYD?

[OneDoorCloses]

I’ll keep this as brief as possible.

Low income family.
I am disabled with a chronic invisible illness.
3 children -middle child has HF Autism .
DH works part time as he is carer to myself and children .

I am currently working very part time but it is crippling me health wise - making my illness worse .

Currently awaiting a tribunal date for PIP after my enhanced care was removed at review (in spite of no change)

DC2 needs a lot of support and currently has middle rate / low DLA .

I worked yesterday and I’m in tears this morning as I’m so exhausted I can barely function .

I also have a UTI which just makes things worse . I’m due in to work at 3pm.

I can’t call in sick as I’m on a “red” status for my absence already .

The next status is guaranteed termination of employment . I’ve had all the reasonable adjustments available to keep me employed .

But the thought of the pain and extreme exhaustion state I will be in by the time I travel to work is making me cry .

I don’t know what to do.
I’ve struggled on and on for years hoping one day it will get better , but I’m getting worse .

Judging by the hell I’ve been through trying to claim PIP, disability benefits won’t be easy to get .

I have no skills or qualifications to get another job .

I would like to re train but it’s going to take a long time as I tire so easily so I won’t be able to work and study at the same time .

I can’t see a way out of this

WWYD?

I may not respond straight away as I need to start getting dressed for work .

DS2 is also having a meltdown over going to Grandad’s for childcare whilst I’m at work this afternoon.

Bump

Is an advice agency of some sort helping you with your appeal?

Have you had a full out of work benefit check?

If at all possible, I'd give up work.

I have help from an advice agency for the appeal .

I haven’t had an out of work benefit check though - where can I have this done ?

I do think giving up work might be my only route to a chance of regaining my health - at the moment I’m pushing and pushing .

I would like to volunteer though to give something back and also help me gain new skills.

I just don’t know if I can afford to do it .

I might have little choice though as the more I push , the sicker I become .

So sorry you have to go through this. My mum went through the same and we had to fight through to the very end of the appeal process when a tribunal finally ruled in her favour. They were shocked it got that far, she was clearly disabled - invisible condition but her medical evidence was overwhelming. Ridiculous. It took a long time but they did back date the money. Don’t go if you can manage financially for a little bit longer.

We will struggle financially until we can claim (if we can claim) for benefits .

I just don’t know what to do .

Sounds like you really need the PIP.

My son receives higher rate care and low mobility. If needs are high, could you ask for this to be looked at again? If higher rate, you can claim carers allowance too.

I think I could claim carers allowance with middle rate but as I’m too worried about claiming it when I’m applying for PIP.

The problem being , as he’s my child , I obviously have to see to his needs first, but then there’s not much energy left in the pot for my own care needs .

I don't know enough to be of any help or to offer advice, but I hope you get something sorted.

It makes me so angry that you are faced with all this and don't know which way to turn.

My only thoughts might be silly suggestions, but are:
CAB
GP to be signed off sick (I know you mentioned red light, so this might not be possible.)
MP
Also - is there a designated area on mn for benefit related Qs?

I'd consider renaming this thread, so it is sign posted to people who might be able to offer advice - include the name of some benefits, or your condition (if it's not too outing) in the title of your thread, to catch people's attention.

(The title's very generic, and so might be missed by people in the know.)

Good luck.

Sorry You are right OP, you can claim carers on middle rate.

I also found this “PIP can be paid regardless of your income, savings or National Insurance contribution record and is a tax free benefit. You can get PIP even if you are working or studying. If you are a carer who has care needs, you can claim PIP for yourself and this will not affect your Carer's Allowance”

Hi OP. Didn't want to read and run - just wanted to say that I am very sorry that you have been having such a difficult time and feeling so awful today. Were you able to go into work?

If you were able to give up work, could you and your family manage financially temporarily? Is there any chance that doing so would have a positive impact on your own health, and so enable things to improve for the future? Please forgive me if I sound too optimistic-I really don't want to be patronising, I appreciate it might not be as straightforward as that, but it sounds like you are utterly exhausted and you can't go on like this. Do you know when the tribunal date is likely to be - can you chase?

Thank you everybody .

I did go in to work but because I pushed through yesterday , I am so weak with exhaustion ,DH is going to have to start later today so he can take the DC to school .

I can just about shuffle to the toilet .

I’m due to be in work at 10am today - I know it’s not going to happen

I’ve been chasing my PIP tribunal for weeks but there’s a very long waiting list so it won’t be until at least March / April next year .

I need to keep going until then because if we win , the extra money will keep us afloat .

If I leave now , we’ll have all sorts of issues with only one low wage and a long wait for benefits .

For the PP who asked , I have M.E / CFS - I’ve had it for almost 25 years now but there’s no sign of getting better yet

I’ve had a few bouts of being better - hence the 3 DC (and the cat).

But every time it was a false sense of security .

Unfortunately with this illness , because it’s invisible and there’s no testing , not many people including health professionals are very sympathetic to it .

I worry that if I do have to give up work and I ask my GP for a note , that I won’t be given one .

I just know I can’t go on like this - my whole life is consumed by pacing and restricting and still I’m exhausted.

Everyone welcome to my pity party

Sounds horrendous op.

I feel for you, and know a lot of people struggling with similar. In your posts I note you want to retrain or volunteer, and in this - I may be wrong - I read the distress of losing roles that long term illness brings. I do understand that. You are more than your illness. However, I think you need to focus on stabilising your current situation and your family. I hope you find a way, and that you appeal all the way for benefits.

Have you looked at claiming cont based ESA? Might be possible...also look at tax credits if you are getting them already