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How do chronically ill people do it?

(22 Posts)
FairytalesAreBullshit Mon 27-Mar-17 09:43:20

The one time I had stuff to do, last week I had it all planned out, then was really ill, so nothing got done. So hoped by Monday my body would be behaving itself, this morning I have a whole new set of problems.

It's like my body is playing the wheel of fortune with me. Laughing that I can't reasonably be expected to make plans, is it going to be third time lucky? Not that I really have time with deadlines.

Just taken every medicine I have for these new problems, hoping a few hours sleep, ill at least be able to get one thing done today.

Finally bit the bullet and started this ESA malarkey, they said about this PIP thing too. I'm just going to check the letter to see if the deadlines tomorrow, or if tomorrow is another option.

The reason it's been put back and put back is I've been feeling so unwell, ironically when claiming for a sickness benefit for the first time. My body isn't wanting to play ball. DH has a unique filing system, so to get medical letters, plus other stuff they want, I need try and get everything sorted, it's going to be a nightmare.

I might need a sicknote for my sicknote to say I can't get it all in on time.

Has anyone got experience of being too ill to get stuff sorted? I'm lay down in so much pain trying to take my mind off how unwell I feel thus being on MN. If I could venture from my supine state I would have got it all done / be sorting it out now.

Ideally I'd have help, but I know what I'm looking for, it's not really a task any one could help with, even if they could I've got no help. DH cheerily announced when I said I was applying, that it had fuck all to do with him.

I despair, on so many levels.

Sorry for whining.

Hope everyone has a fantastic day, plus a fantastic start to the week. 

I honestly wonder how the actually ill people jump through these hoops. I've just left the starting line, the finish line isn't even visible. Hoping the sleep fairy waves her wand.

MissisBoote Mon 27-Mar-17 09:52:39

In all honesty - they don't - not when they try to do it all themselves.

You need to get a team on your side.

I'm shocked that your dh doesn't think he should help you - but that's probably another thread.

Re:Esa and pip - call the cab for help, or your local welfare advice service, or your gp surgery - they may have a welfare advisor in house. Most charities also have a welfare phone line that can give advice to people claiming that's to do with their condition.

Another website is benefits and work. Lots of Facebook groups too.

For both pip and Esa you can extend the deadline for return once.

flowers flowers and a rocket to stick up your husband to get him to pull his finger out and support you. Has he forgotten the 'in sickness and health' part of his wedding vows?

joangray38 Mon 27-Mar-17 10:06:44

You need to keep all tour letters etc filed in a way that suits you- i keep all my letters etc in a multi file file 15 files in one so I can prop myself on my bed and everything in need is to hand. Keep photocopies of every form / letter you send in and send in by recorded delivery.
Space yourself - with pip i found a website that gave advice about how to fill it in and filled in one question a day. I gave myself a deadline of a week before it was due in to finish it off so I had leeway.
Remember that DWP are just looking for a a way not to help you so write clearly, stick to deadlines and keep copies of everything/ notes of telephone calls.

Teabagtits Mon 27-Mar-17 10:11:26

I'm afraid the system is designed so that sick people are deterred from applying because it's so bloody complex. Many people can't do it without additional support and places like CAB are good for this. You'll have to learn to keep copies of everything and request copies of consultants letters etc to be sent to you as well as you gp. Eventually it becomes easier but applying for esa and pip are a nightmare designed to stop you. Good luck

Madhairday Mon 27-Mar-17 11:03:48

It is really, really hard OP. So sorry your dh is less than useless hmm do you have a relative or friend who might be able to come over to help you unearth all the paperwork? I know well how it feels to struggle to do the simplest things. It's incredibly frustrating and most people don't get it and don't understand why you can't manage something like getting a form done. The dwp don't make it easy for ill people at all.

Like pp said try cab and various sites for different conditions have great tips on filling it all in.

I'm so sorry you're facing this. Is dh usually like that? sad

FairytalesAreBullshit Mon 27-Mar-17 11:45:49

Ive been lucky to have had private healthcare, they're the ones that send the in depth reports. Then letters for work and HR detailing everything, including prognosis, reviews every so often, letters stating new things.

My DH has a unique filing system which involves a pile, when about to topple it gets decanted all over the bloody place.

My GP is on holiday this week, so she's looking to write a new report. But I was really ill last week, before that I'd say barely aware of anything, then today when I hoped things would pick up, other things have flared, I have multiple health issues. Spent most of this morning trying not to be sick or pass out from pain.

There's no way around it, I acknowledge that it's going to delay things, but today is pretty much a write off, which will undoubtedly piss off DH.

Yesterday I was really unwell and in emotional turmoil. Thankfully my DB came and talked to me. He knows how unwell I am and how my family either ignore me because I had the amazing career, amazing house, if I'd worked DH likes to remind me that we'd be even higher up the social scale. Those that don't ignore me, are very stiff upper lip, my parents are quite old, so in there Day there wasn't these handouts you got on with it. But in truth from a 70's/80's childhood, I was forever running things round to neighbours in need. The street would get together to get meals to those who couldn't do such things, they'd help with housework, they'd hand down clothes and stuff needed when it wasn't needed. You didn't have appliances on driveways, as the neighbour in need got an upgrade.

I cried on the front yesterday, thinking an irate car driver was a neighbour, it wasn't. But we barely talk to our neighbours, an example there's no milk, I wouldn't ask for a drop, that would be social suicide for DH. Plus the lifestyle he and the children have, they'd pretty much think I was a cheeky cow. New cars, children always smart etc.

I have a pound to get some milk, or I could split it and get less milk plus a paper that's 50p. I can't move though.

We sought help from various services when we moved, so they have a few adaptations here and there that aren't that obvious. I think I mentioned before, I didn't even get a SW assess me for DP it was an admin assistant who thought a lot of herself. Everything asked for help wise, was pretty much negated, like say cleaning, well you have a dishwasher, your son can do vacuuming. In a few years your daughter can do more. Firstly they're children not slaves and it's not their fault I'm unwell, secondly, DS would empty the DW or Hoover if he could do it via his phone or tablet. Both help as much as I want them too, but they shouldn't have too.

The latest council tax bill that said oh 'x' is going towards social care. The bloody irony, when I've seen on forums people who get DP and it's purely for leisure not existence. But I wasn't even granted it for leisure purposes. Tried and failed badly as the one thing I could enjoy if things weren't so crap, it was suggested I look for a volunteer. Why should someone do it for free if they could get paid.

Carers Allowance is a joke, my one sister who could help a bit, already gets CA for her DC. So she doesn't need too, if I'm that bad maybe I should go in a home. I'd happily go into a workhouse to alleviate the burden from everyone round me.

I think you're right, I did some phone thing, the PIP forms came 10 days later, giving you 2 weeks to gather evidence as they said they won't ask your GP or Consultant, that's my job. Plus this form is crazy. Part of me knows filling it in will be me admitting how bad things have got, which is upsetting it itself.

I'm so sorry to sound so moany and whiney. Hand on heart I get nothing much from DP. He's moaning that I have to have washes in my w/c by the sink, it's been 6 months since I got in the bath. But whilst he can lift me, he can't hold me and help me manoeuvre my legs. It's always a big thing because he has to brace himself if I collapse. A wetroom would be a luxury but DH is looking towards his next house.

How can anyone fill in a form like that in such a crazy short time? I can't get my head around it. I can't get my head round the supposed millions on ESA & PIP. I do know how how, I used to go on FB groups years back, they sung about this website where you could get second hand aids like crutches, so it looks like you use them. My W/C looks like it's being held together with a prayer grin The same website has generic phrases guaranteed to get you points and stuff like that. That's a rant for another time.

Butterfliesarefragile Mon 27-Mar-17 12:32:56

I made a decision based on self preservation to marry a quite wealthy man he pays for care, cleaners, therapy etc. Mine is a MH issue.

He gets his trophy wife I get security its the sort of transaction that will horrify some but I'm safe with him.

Notanotherpawpatrol Mon 27-Mar-17 12:52:05

Fairytales, it's crap. I'm so sorry you are too ill to fill in the stupid forms. I had to do them for DD and it was emotionally draining admitting what was really going on (I'm very good at minimising and burying my head in the sand!) I can't imagine how hard it must be to be doing it all yourself.
Going forward I agree with the advice to file away your letters in a way that you understand and that suits you. Everything is hard enough without having to spend half a day hunting out all the evidence!

FairytalesAreBullshit Mon 27-Mar-17 13:00:50

I shouldn't moan about DH, he does an amazing job working and doing cooking, cleaning, organising the children. No one really expected things to get this bad, it must be hard watching someone suffer, which I guess is why he's the way he is. We've been together a long time, I was ill when I met him but no one expected this. I think it's awful to say, but being pregnant and having 2 children upset my body even more.

The simplest of tasks is a nightmare, as the pain is bad, even on strong meds. I'm reluctant to take more as, at best it makes the pain a bit more bearable.

I don't know if everything my children do is inaccessible, but I think there's a fear that I'd get in the way, or maybe I'd worsen in condition and need taking home. So I do understand. I've embarrassed him lots by having to abandon him whilst in a restaurant with the children. He really hates that.

dancingdaffs Mon 27-Mar-17 13:03:17

Part of coming to terms with a chronic illness, as a sufferer, is being able to admit it to yourself. You want to carry on as usual, you fight so hard not to 'give in' and feel a failure when you do. It's a blow to your pride, at least that's how I felt, especially as I'd always been so independent and it is hard. The psychological side of suffering from a debilitating physical illness is often underestimated.

Try not to structure things in terms of letting everyone and yourself down or of being a burden, or think of yourself as being moany or whiny. Your circumstances have changed and you and your family need to find coping strategies to deal with that. You can't do this all by yourself, no-one can, you do need help. It's bad enough feeling like this when you have a really good support network around you as I did, it must be even worse without that. Having said that, sometimes families find it difficult to come to terms with such changes too.

As a previous poster said, do things in small chunks, piece by piece; that way you will feel less overwhelmed. And stop when it gets too much. Can you manage an online shop for food? But why can't your DH get some milk on the way home from work, regardless of whether you are ill or not?

As for home care assessment, can you ask to have this done again on the basis that circumstances have changed, ie, your health has worsened? It's not right that your DH is having to help give you strip washes because you can't access the bath. What do you mean, he's looking towards his next house? You need help now.

Renaissance2017 Mon 27-Mar-17 13:03:53

I'm not sure where to start with all this! I'm chronically/terminally ill (I suppose terminal is quite chronic!) and have found the whole process of getting help a nightmare.

When I initially fell ill I had no clue but I have found that government departments are actually quite good at helping you out and giving advice. Your biggest problem is getting someone who can pick up the batten when for you when you're not well enough. It seems as though your husband is unwilling to do it.

It's unacceptable for him to say it's your problem or to blame you for being ill. He married you in sickness and in health. I'm sorry, but that's part of the contract. You need to be looking at getting the house you have work for you, not moving unless it's to a house that's better suited to you.

Dealing with the emotional upheaval in suddenly becoming chronically ill is hard. I cried a lot. I was a snivelling snotty mess for ages. I still have days when I am. It's almost like a grieving process for your former self. You will find your new self soon and then it all becomes a little easier.

It may be worth looking on Facebook for support groups, but be careful. With my illness people die often. It got. Bit morbid for me and I felt like I was just waiting to be next on the list!!

You also need to look frankly at what you want from life now. Do you want to stay with your husband? Will he stay with you? Plus many , many more!!

Birdsgottaf1y Mon 27-Mar-17 13:16:12

I've been chronically ill for over a year.

I had to get the CAB to handle my benefits (this is from being a SW).

I thre a lot of stuff out, so my house was easier to manage.

My house and gardens are in a terrible state. I'm getting better, so I'm just starting to sort that.

I could have approached Charities. but I didn't have the energy levels and was too embarrassed to let people in.

I was lucky in that I got referred quickly to a psychologist for those that are newly ill and/or disabled.

As for the form, you'll get to go to appeal, to provide your medical evidence. Personally, i think this is to put people off, or they hope that they die/get better, so benefit doesn't have to be paid.

I dont agree with you that your children shouldn't have tasks around the house, with your DH picking up the slack.

FairytalesAreBullshit Mon 27-Mar-17 13:25:49

Thank you for your support.

To be honest dying has been on my mind for about 5/6 years. My conditions are also degenerative, because a lot of it is rare you'll get consultants saying, oh it's too risky, oh just see how you get on. I feel like saying you honestly having a laugh.

DH I think is looking to a life without me which isn't the end of the world. Half the reason I love MN is it's seldom I really get to speak to anyone. I hope I help when I give advice/opinions.

I am truly grateful to you all. I know sometimes I say things that are a bit out there, but I have so much time on my hands lay down, my brain wanders all over.

I've got wetwipes, anti bac wipes, the thought of washing my hair fills me with dread. I guess being tube fed is an easy fix. I hate the perception that you don't try hard enough to get better, with some remedy from medieval times grin

Babyroobs Mon 27-Mar-17 13:32:39

The Esa forms are a bit overwhelming and you need to know whether you are applying for the contributions based one or the income based one. have you already got the PIP 2 booklet/ application ? if you don't feel up to filling it out then you could ring and ask for an extension. You might also get some help from someone at CAB to help you fill it out. Part of my job is assisting people to fill them out but only for people with cancer. My experience is that people who are chronically ill just can't face a 60 page booklet and need help to word it. PIP s becoming increasingly hard to claim, it breaks my heart to see what hurdles ill people have to jump through.

Babyroobs Mon 27-Mar-17 13:41:11

There is also a facebook group called ESA/ PIP support or something like that which has loads of chronically ill people giving advice to each other. It seems quite supportive. I did join briefly a few weeks ago but came off it as someone took a comment I made completely out of context and got hugely defensive . Anyway there s lots of support on there and people can explain the procedures for applying for ESA/ PIP, how to prepare for appeals etc as well as general support.

Babyroobs Mon 27-Mar-17 13:45:43

I see you have already sent off for the PIP2 form. Yu can ring and ask for an extension. I spoke to them the other day to arrange an extension for a client and they have a massive backlog anyway. try to fill out the form with a s much detail as possible. It might be helpful to keep a diary of the struggles you have and the care you need. Send as much evidence - referral letters/ hospital discharge letters / psychiatrists reports etc / photocopies of prescription lists/ details of any therapy / physio anything like that. When you have sent that in they will call you for a face to face assessment.

Birdsgottaf1y Mon 27-Mar-17 13:52:05

OP, if your condition is going to worsen, once you have your benefits sorted, then you need to consider your home life and marriage.

Babyroobs Mon 27-Mar-17 13:58:19

Op , I'm not sure you will get ESA if your husband has works unless you can claim the contributions based one which will look at your NI contributions over the past 2 years. It is worth applying anyway though.

dancingdaffs Mon 27-Mar-17 14:01:51

Nothing you are saying is 'out there'.

Please get help with the form filling, it's not reasonable to expect you to be able to do this. GP, CAB or charities dealing with your specific condition(s) are good places to start. The forms are meant to be overwhelming, they're designed to put you off. Don't be put off, you need this support. It will help both you and your family, the impact on your family should also be taken into account.

On a practical note, you may already know about them but I found these www.amazon.co.uk/No-Rinse-Waterless-Shampoo-Caps/dp/B008ATC75E?tag=mumsnetforum-21 helpful when caring for my mum and she couldn't stand or bend over a bath or sink to wash her hair.

Babyroobs Mon 27-Mar-17 17:20:55

Another option is to seek help from a disability charity to see if anyone could come to your home and help you fill out the forms.

FairytalesAreBullshit Mon 27-Mar-17 21:33:34

I worry about not being eligible for the income one, the annoying thing is, you've have to have worked in the last 2 years. But I worked for over 25 years and paid loads of NI. So that's rather annoying.

DH got the milk, but got woke up with rowing as I'd not locked a door. Not on purpose, just simply forgot, the way I got spoken to I thought we'd been burgled.

Will speak tomorrow about extensions, definitely need one for PIP form. Thank you so much for your help.

I know some on a group get their SW to do it/them, but I don't have one. But hopefully they'll be ok with an extension, I can do as you said and pace it all, getting stuff done.

Got one thing done, as soon as all meds kicked in, I thought act quick, get at least this done.

One thing that is hmm for me, if you are tube fed, you can still have the odd bit to taste. No matter what everything contains stuff I'm really allergic too, or super spicy food. I went in the kitchen and looked at left overs, was told not to touch it as it's way to spicey for him. I buy the odd bits, like I can have lollies to freshen my mouth, they get eaten so quick.

Hushabyelullaby Mon 27-Mar-17 21:53:20

Not sure if you're aware OP, but the Welfare Rights department of your local council are there to help people apply for benefits to which they are entitled. I had a Welfare Rights officer visit me at home, talk me through everything, and ask me questions. She took notes, went away and completed the DLA forms (what PIP is now), posted them off, and I was awarded high rate for both elements first time. I really hope you can get some help.

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