To think people like me should get some sort of financial help

[Shimmershine819]

I'm at my absolute wits end. Crohns disease for 25 years. I work part time in the NHS (25 hours per week). I cant afford to drop any more hours. I've done the calculations, we'd get no help as a family. We can't survive on DHs wage alone.

No more accommodations can be made for me. I'm so ill. I've just finished a 4 hour shift, 4 short hours and they felt like an eternity. I was in so much pain, nausea, sweating. Trying to put on a brave face.

The multiple treatments I'm on don't seem to be making a jot of difference.

I think of all of those out these like me, with chronic illness, quietly struggling through each day with no help. Not ill enough for PIP, too ill to try and live any kind of normal life. My life is now work and bed. Thank god DC are older now.

Just needed somewhere to offload.

@BananasinPyhamas it's tricky
On a bad day I could walk, if I absolutely had to
The main things for me are fatigue
Once every 14 days I inject a medication which gives me flu symptoms for 24hrs and then a flu hangover so bone pain, headache, high fever, shivering, nausea, fainting etc which is the other issue
I earn min wage and live alone but have a mortgage so not entitled to any help there either

I probably should try again, but stress makes MG so much worse and putting myself through it feels daunting

I know someone who’s an expert at getting PIP awarded. Sounds like you deserve/need it. I would try get some advice on what you need to say to get the PIP.

But....excuse my ignorance but don't you just need to over egg it? And say on a bad day no I absolutely cannot do anything rather than say ' well if it was life or death yes I could do that on a bad day'

I'm not saying to lie....but it sounds like a bit of over egging is required. Sounds like you all deserve it so 🤷

If walking on a bad day can’t be done repeatedly, reliably and without pain - these are the criteria as per the form / depictions - then no, you can’t walk. That’s not fraud, that’s literally following their own guidelines.

I am not trying to be difficult but you really need someone who understands the forms or to join a Facebook group for PIP - there’s one if you search with 60k members and the admin will help / point you in the right direction for free.

What does your husband earn?
Lots of people are saying the OP should get PIP, but presumably she knows that she doesn't qualify.

I work full time.

I have chronic pain, fatigue and a severe mental illness. Medication keeps the mental health mostly stable but leaves me foggy and with pins and needles. I go through pain killers like smarties, which cause their own side effects (can't take anything NSAID anymore since they gave me gastritis, twice).

I work, I go to bed. I live on premade sandwiches and salads because I'm too exhausted to cook. Today, I couldn't even face standing by the microwave for 3 minutes to make a ready meal, so I had a yoghurt instead of tea. I rarely manage housework. I'm doing well if I shower twice a week.

I can't work less because we need my income. DH picks up my slack in other areas.

It's shit and I would love to be able to afford to work less and have a little energy to actually have a life.

(But there are people much worse off and at least we can pay the bills)

@Xrays I'm in a group for my condition and even with doing the correct way everyone has been refused. Doesn't help it's such a little known condition

I'm basically physically capable and mentally capable, and if I HAD to walk somewhere on a bad day and cook, then I could. But the fatigue is so that I usually finish work, sleep for 2hrs and then do evening stuff. The condition is neutropenia (so also immunocompromised) if anyone else has it, also hidradenitis supprativa and hashimotos

PIP is not means tested so this is not the reason anyone is turned down.

I hate these benefit bashing threads. 'I know someone who can afford and has the energy to go on holiday once a year AND eat AND she bought a new skirt last week AND I'm sure I saw her smile about 2 weeks ago'. Ridiculous

your mother in law probably gets attendance allowance rather than PIP>

Previously you used to get DLA as an adult or a child, now only children get it. Its about how the condition affects you and what condition stops you being able to do, compared to a healthy person. Attendance allowance is quite similar, but having filled out DLA and AA , the later is far simpler.

PIP replaces DLA at age 16.
That is about what help you need from someone else to do things. You could find for example, with a condition like, say, cystic fibrosis, you may have been on high rate DLA, but come a PIP assesment, if you manage your medications and treatments yourself, you get nothing for PIP

It's always tricky when your assessed as a family so I'm assuming with yours and your husbands full time wage you'll be deemed to have enough to live on. If you own your house you won't get help towards your mortgage and I feel that's right really.
You say you can't afford to drop hours but if you did or even stopped all together, would you be eligible for any kind of help such as tax credits or Universal Credit?
I don't think it's worth putting your physical and I'm guessing MH at risk. Crohns isn't gonna go away so at dome stage you're going in to have to look at adjusting your lifestyle, so cheaper home, less treats etc.
I'm sorry your treatments not working bout for you

get help filling in the pip novel form,our local carers centre knows the right words to put,try again think about your worst days,you can work and still get pip.try again you deserve it good luck

Please ask your local Citizen’s Advice for a benefits check and help with the PIP form filling.

PIP is not means tested so this is not the reason anyone is turned down.
I'm fully aware of that and I didn't suggest that was the reason she doesn't qualify for PIP. The OP mentions both things.
The OP has said that they cannot manage on just her husbands wages, but presumably he earns too much for them to qualify for any means tested benefits if she stopped working.
She also says that she cannot get PIP, but lots of people were saying she should get it, so I was responding to them because presumably she knows better than them whether she would qualify.

Agree OP, you should be entitled to help. The benefit system is not fit for purpose. So many people just left to fend for themselves. People come on threads like these claiming they know someone who milks the system, drives a range rover etc but people like that are few and far between nowadays and tbh if i met someone like that I'd think bloody good for you. Far too many people, yourself included, slip through the cracks and are forced to get on with it, damaging their health further.

In Scotland we now have something called Adult Disability Payment and it’s for people with long term health conditions, my GP told me to apply for it as I have fibromyalgia, have had to go part time as full time
was too much at work and take a bunch of medication. One of the criteria was if you are on long term medication and also your conditions requires you to pay for extra support (in my case I pay for a chiropractor)

Sympathies from a fellow Crohn's sufferer who has had absolutely no success with any of the new biologic treatments.

I'm so lucky that I have a work from home job. I'm too ill to leave the house before 11 and I need to rest for an hour each day. I can manage 22.5 hours spread over 5 days.

I'm so lucky to have husband who props me us financially... the state needs to support people like you better.

Have you asked your GP to sign you off while you recover?

PS: I know it is a chronic illness, I mean from this flare-up.

Rebel I have the same condition as you. I claimed for PIP last year and was awarded it. PM me.

My niece has/had u/colitis and after years of suffering, hospital admissions and a very restricted life, she had a flare up that they couldnt get under control, she had an emergency illeostomy and a stoma bag fitted around 3 years ago. It has changed her life, she no longer suffers pain, has the energy to work FT, walks the dogs for miles, can plan full days out, and is now off on maternity leave.

I know noone wants to be pooing into a bag on their tummy, but it is something to consider or discuss with with ibd nurse if you havent already. She wishes she had it done years before.

The irony is she also now gets PIP because she has a stoma.

Oh no, hang on. It's not what I thought. Sorry Rebel

Appeal your pip assessment and when filling it in you need to fill it in as if it’s the worst day scenario.

My son has ASD and ADHD, When he was 4 I had help from someone at our local independent living organisation (charity?) and they explained what to put on the forms etc to maximise the chance of being awarded DLA. I don't know if this body exists outside my county, but I agree with @Nicky that there are people out there who can help people fill out the incredibly long and complicated forms, and hopefully help people navigate the minefields to get the help they need.

Really sorry to hear this. It does seem like it’s very much a lottery as to whose desk the form lands on.

I have all sorts of autoimmune issues and am in several health related groups where everyone has been lucky enough to get PIP- some like me have got it first time applying without any assessment at all (based on the form and on a phone call to my rheumatologist) and some admittedly have had to appeal decisions. I always try and help people to get it where I can. I do think a lot of the time it is down to people not understanding either the wording they’re looking for or the forms themselves but unfortunately there are times it will end up on someone’s desk who just doesn’t “get it” and it results in no award given. Very frustrating.