ME - can’t work anymore…what now?

[MEwhatnow]

Anyone been here?
GP quite sure rheumatologist will diagnose ME
I can’t work anymore as every time I attempt to I end up bed bound for weeks
UC will put me through a health assessment it seems

Do you have critical illness cover or income protection?

With universal credit you have to provide fit notes for 3 months before they send you for an assessment, you can request a telephone assessment if you'd find it easier. If your application is successful you will then receive an extra amount and not be required to provide notes anymore or look for work.

You should also start the process of applying for PIP.

I once had a GP diagnose me with Lupus but when the rheumatologist did my blood work it was so obviously not Lupus he was visibly angry at the GP. I had even been put on medication for it, and went through the whole mental processing of having this disease.

It not being Lupus didn't change the fact I'm ill- it's Long Covid btw. My point is, don't jump ahead, wait until you have a concrete answer.

I can't work either, can barely manage the bare minimum basics with laundry, eating, etc. I've been applying to customer service jobs with remote positions so I can work from bed. I hope to get a chat position actually. I also taught myself to make artisanal soap, which brings in a little and makes me feel accomplished mentally, even though it's hardly any work at all. I do what I can when I can. And when I can't, I can't. Be creative and look at what you can do, instead of what you can't.

Yes it will just be a case of waiting for a work capability assessment which can take some months. As pp says you could also apply for PIP which looks more at how your illness affects you in relation to daily living activities ( cooking a simple meal, washing, dressing, managing meds etc ) wheras the Uc work capability assessment looks at ability to do ant type of work.

I'm on ESA and PIP for post viral CF. As said you need sick notes, otherwise UC will want you on training courses for working from home etc. I had to go through three appeals for PIP. My BF had a heart attack (August) and he is just about to go from UC (initial claim) to ESA, he's waiting on a PIP assessment. He's got sick notes until the end of December.

M.E is horrendous..im sorry. I was diagnosed 23 years ago and fibromyalgia. If you struggle to work and do everyday things apply for pip and U.C

If you’re unable to work, then presumably you’ll be supported by the tax payer. That’s why the social welfare system is in place, to help those who cannot support themselves. I imagine you need to make a claim to the job centre and they’ll tell you what you’re entitled to?
I had a friend who had ME years ago, it’s not fun.

What is ESA?

Im on UC due to a low income as I went part time when this all first kicked off last year in a bid to stay employed but I’m constantly off sick / very unwell

It is truly awful

I was retired on ill health grounds. My advice would be contact your union if your in one, don't resign (let work dismiss you on ill health grounds) this all supports your claim for esa/pip/uc without the need to look for work. I had mortgage protection so claimed that for a period of time. I claimed my pension in my mid 30s. I think the hardest thing is coming to terms with a new restricted lifestyle, loss of friends and family because you cant do what you used to do and the financial uncertainty (having to reapply for benefits).
What ever you do take advice.

ESA is employment support allowance. I’ve literally just applied for it.

I also have PIP. I need to apply for UC really too

You’d think so wouldn’t you? In reality, you have to pretend to be a complete imbecile who can’t wash, can’t hold a conversation, can’t go to a shop etc. And then they still find reasons not to grant it.

I wish it was this easy…

I mean, I get probably £200 a month max…and that’s it. Not enough really but I don’t qualify daily living rate PiP despite not being able to cook, or even bathe independently. I barely get mobility rate and even there basic.

I do qualify for ESA though. But it’s not much

@Soubriquet did you appeal the decision? As it sounds like from what you've said you should definitely qualify for daily living.

I myself qualified first time for enhanced on both, but I do know many people have to fight for it and it's pretty much assumed when you apply that you will at least have to do a mandatory reconsideration

Why would you be pretending ? What an odd comment?

The only type of ESA that can currently be applied for is contributions based ESA ( New style ESA ) and only if you have paid enough NI contributions over the past 2-3 years. It can be claimed alongside UC but is deducted in full from UC so you are not any better off by claiming it unless the amount of ESA is higher than the amount of UC you receive. Claiming New style ESA does give you a better class of NI contributions though whilst you are too ill to work. It cannot be claimed until all SSP has ended. new style ESA is non means tested and based on NI contributions. Not sure why you have claimed UC instead - do you have kids and/ or rent to pay ? Or still getting SSP paid?

Yes. Still didn’t get it. I know I’m supposed to appeal again but it does take the fight out of you

Before you give up can I advocate for the Carnivore diet. Very low carb works amazingly well for auto immune and conditions like ME.

I can't work for health reasons, not ME. I get enhanced rate PIP and New style ESA, works out to about £250 a week. DH earns a high salary so we manage (if I was on my own I'd get other top ups to cover rent and council tax etc, so I wouldn't have to pay it out of what I get). It's less than I'd get as a salary but it gives me a bit of independence.

Because if you don't pass the test, you could well end up homeless and penniless. People are forced into these positions to survive.

It's worth finding support in applying for U.C. and P.I.P., as it's a fluctuating condition and that can be harder to explain or get across in the forms if you don't know what the applications involve.
Someone from a charity or Citizens' Advice who can help you navigate the system and get the right benefits. I have friends with M.E. who receive P.I.P. and universal credit. They've mentioned the M.E. Association are good for information and some NHS trusts run courses in managing pacing yourself with the condition.

Second this. Has MS for over a decade and no relapses, I credit paleo/autoimmune protocol diet. I'm not really on it now mostly but I go back on it if I start to feel inflamed and everything calms down. Also fasting.

Thinking about your future when you are facing long term illness is not "giving up".

I'm sure that's not what you meant, so please pick your words more carefully.

I’m in so much pain
Is this much pain usual for ME?
it’s been 3 weeks of agony now

Unfortunately yes. I get a lot of pain in a flair up.