Would you stop working?

[MananaTomorrow]

I have ME/CFS and have been struggling to carry on working for more than 10 years. Some years have been better than others, this year probably one of the better ones.
At my worst, I have been fully dependent on DH. Apart from my 15 hours max of work in the week, I wasn’t able to do anything at all. No cooking, no cleaning the house. Not even reading for pleasure (let alone going out for a walk etc…).
Now I am not as exhausted so I can cook a meal from time to time. I can put the washing out to dry wo it feeling like I’m climbing Mount Everest. But yes still restricted.

I’m at the point where I am tired. Tired to be pushing through. Tired to constantly be making an effort ‘to be normal’ or ‘to participate’. I’m dreaming to stop working. We would loose the money I’m making, between £400 and £700 a month. Nit great but manageable.

I just feel like a failure for wanting to give up though…
How does it sound to you?

Do you qualify for PIP or anything?

I very much doubt I would qualify for PIP.

I have been wondering about the ESA but not sure if I could qualify for that either.

I looked at what was needed to make a claim for the ESA. There is a lot about giving names of people they can contact to evaluate how much you can do. (Eg physio, GP etc…)

I don’t have that. I have been coping the best I can on my own because there is very little they can offer for ME/CFS really

I’m in the same situation. 6 years so far.

I’m not due to retire for 18 years. No way can I make it because, apart from the 16 hours a week I struggle through work, I can’t get off the sofa. I dream of giving up work so that I have a hope of recovering but I know pip is difficult to get and we can’t afford for me not to work.

I see people, as part of my job, who have ME but don’t work. They complain they are tired then sit there telling me about their shopping trips, their trip to the theatre, their holidays, their day out … I want to weep. I can’t even manage a trip to the supermarket!

If you can manage then do it. If I won the lotto, just £60,000 to pay off the mortgage, I would give up in a flash.

It might be worth looking in to. I'm sure PIP could be an option.

If you're struggling to that extent then it's not unreasonable to want to give up work.

One of my friends has cfs and has struggled for years, working pt, trying to make ends meet. She moved to a different area and got much more support from her Dr. She was encouraged to claim pip and was successful. She is now taking time out for self care and has started a part time degree to allow her to return to work in a less physical capacity with a higher rate of pay. Even if that doesn't work out, it gives her something to aspire to.

I have ME plus some other issues that cause pain and fatigue, I get it! I'm suddenly pregnant and it's weirdly making me feel better. After mat leave I'll be retiring (I'll be nearly 30) and if I ever return to work it'll be something I can manage in my own time if I can cope with it.
I'm not a failure and you aren't either. As long as you will be financially okay, go for it.

Nice to hear from other people in the same boat.

I totally get finding a job that pays better because I’ve gone down that route too. I am self employed which helps because I can reduce my hours or increase them if I want to.

I think just now I’m not just tired. I am exhausted from fighting. But stopping feels like giving up.

I have to say I’m also wondering what on Earth I would do if i stopped work. My world has reduced to nothing over the years and I don’t know anymore what I like or don’t like, let alone what I like and don’t like that I can do!

I get PIP / ESA for something else...if you have a diagnosis from a specialist it is worth applying, just be prepared you might need to appeal.

It gets backpaid though so that could be a help..

It's not giving up - it's allowing you to get as well as you can be. If you'd broken your leg, you take time out to repair. When you have space in your head, you may be able to figure out what you would like to do.

My friend also went self employed so she could choose her hours and work when she was able. She finally realised that things weren't getting better and took the step to stop working and stressing her body.

I had Covid (on a ventilator 2 weeks) and a stroke, both last July. I'm 90% back to normal but not yet strong enough physically (lungs still affected, according to X-rays, and my stamina is low so wouldn't be able to stand or work for more than a couple of hours at once) and mentally. I don't qualify for PIP, but I do get ESA, contribution-based, of £148 per fortnight. It's better than nothing - my husband works fulltime- and pays for a few things I need

Myquietplace sounds like you should get PIP too, might be worth re-applying.

It sounds like something needs to change so that you can take care of your health. You only get one life. Is there anything you can do for income that is more flexible / less cognitively or physically demanding , instead of your current role ?

I have an idea that I know would work well re work.
But I would still need to build up the business/offer.

I’ve been wondering whether I should just stop what I currently do and concentrate on the new project (and hopefully it will be up and running in the next 6 months). That means a drop in income for that time.
Or o can carry on with what I’m doing now and build it on the side. This will take much more time.

I’m slowly realising that what I’m talking about is quality of life.
Just now I can do stuff, earn a bit of money etc… (well paid tbh.) but I have no quality of life and haven’t for a very long time.
It would also means accepting i am ill and disabled which I am still very much struggling with….

Personally if I was you, I'd spend the next 3-6 months visiting your GP, getting referrals to pain management clinic if applicable, and physio. Does your Trust have an ME clinic? You could get a referral. Also try engaging with the ME/CFS charities.

After this, then put in a claim for PIP. That would mean you'd have the evidence for PIP and also time to really work out what you want to do and what you feel is best for your health.

Yes we have an ME clinic and I have been going there when I was first diagnosed. They can’t offer much though.

But you are right about needing to go see a GP etc… just to be able to get some ‘proof’ I am unwell. It’s a real bugger though because I actually didn’t have the energy to do all that…

Do you have any letters from when first diagnosed, any prescriptions for any meds? All these can be used. Also the GPs can give you a print out of conditions to use as well.

How old are you OP? I'm in the same situation with crohns disease. My life is work (part time) and the sofa/bed. I'm 41 and would like to work until I'm 50 but its looking increasingly unlikely. I'm just absolutely exhausted. We're a low income family but thankfully have nearly finished the mortgage. I've done 18 years nhs so I'm wondering if I'd be able to take ill health retirement. I've never tried to claim PIP. I'd really like to work until DS is out of his teen years at least as money will be tight. Ultimately I don't think it's going to be my decision to make though. Its all quite scary and I feel very vulnerable, I don't want to admit defeat at this age, I don't want to be a burden, the guilt is horrible.

No meds.
And I won’t have letters form back then, only the last couple from the ME clinic for a referral to their psychologist.
But yes the GP should be able to give a print out if my conditions.

OK if you ring the consultant's secretary they should be able to send you copies of the letters. Or the GPs will let you copy them from your file.

I've only ever sent in stuff like that for PIP and it has been used.

There is a good site called pipinfo online that might help you.

Geom you might qualify for ESA too and / or topup to UC/tax credits, might be worth looking into.

@Geom372, I’m a but older at 50yo but I completely get what you mean. I was younger than you when I first had symptoms and I didn’t get diagnosed for many years after that.

The guilt is awful. It shouldn’t be because really no one can’t help being ill. But it took me all those years to finally feel I should down the tools and ‘give in’.
I’m not sure what the answer is. I think that often wen I look at myself I don’t think I’m that bad and really I should be able to do . And then I hear about someone with ME who does much more than me but has stopped work ‘because they are ill’.
I swing between ‘why am I putting myself through that’ and ‘if I can do that, why are they not??’ Or much more often ‘I can see how hard it is for them and they made the best decision for them. But there is no way I am going to stop work even if I am actually worse than that’….

Thanks for the site @Orangesandlemons77. I’ll have a look.

Yeh its a constant mental battle isn't it especially when symptoms can fluctuate. I've had timed when I can climb a mountain one day and struggle with the stairs the next. I also don't want to be ill, I don't want to be disabled, I want to work and make money and support my family and I've done it for 18 years so I don't know why I beat myself up about it. I dont want people to think I'm lazy. I was diagnosed at 16 so by god I've put up a fight. Honestly, if I was 50 I'd go for it. Lots of people retire without health issues at 55 anyway!

I've never looked into ESA or PIP or anything. I need to start doing some research. I've basically got 1 more treatment option left and if that doesn't work then I can't see me having a choice in the matter.

Sorry for hijacking your thread OP!