If you have a chronic illness how do you cope day to day?

[Sorrythatnameistaken]

That's it in a nutshell really - I have Lupus which means a lot of fatigue, pain and generally being unwell. I have periods of time that are less intense and then worse flares but im never well. But life can't just stop for me, I work 9-3 5 days a week (we need the money), have two very active (read demanding) children and a house to look after and honestly I'm overwhelmed, exhausted and struggling.

I used to be on top of it all but now my house is a mess which really gets me down, I spend every weekend desperately trying to catch up on all the laundry that's built up during the week so have no time to rest there and in between am doing the usual essentials cooking, cleaning up after, walking the dog, sorting out for kids school and social and health needs etc etc.

Doctors advice is always to rest and pace myself but when? My husband helps when he can but works long hours and I have no family support.

So my question is really how do you all do it? I have cut out everything 'extra', I rarely go out unless it's something I have to do because I know it will add to my exhaustion and all my hobbies are gone, I have nothing left to give up or say no to. And there is certainly no relaxation or calm at home!

I have RA, sjogrens and I'm bipolar.

I always keep easy but nutritious food in. Frozen bags of casserole veg and frozen diced meat. Chuck them in the pressure cooker/slow cooker for an easy meal. Tomato/veg soup anda toastie with pre sliced cheese is a full meal.

House wise I wash one load of washing every single day. I dry that load of washing on the line or airer if possible but I do have a tumble dryer for when I'm not up to it. All dishes go straight into dish washer. Bathroom gets a deep clean every two weeks but the sink/bath gets a quick wipe over with antibacterial for wipes while I'm brushing my teeth with an electric toothbrush in the morning and the loo gets a wipe before I go to bed. Robot hoover downstairs means I have to sweep any debris up /into a corner every single night before bed.

Basically I do the minimum on a daily basis and do more when I am up to it. Some weeks I've got zero washing and my house is lovely and tidy. In a flare up I've got 6+ loads of washing and am on the couch.

I do find that decluttering or having a place for everything really helps.

A mobility scooter to walk your dog with? I couldn't have a dog without mine.

This is a really interesting thread.

I live on my own and I often struggle to cope with the constant tiredness.

I do almost no socialising and spend most of my weekends at home as I feel so tired so quickly and it takes me a couple of days to recover even if I stay out only briefly.

I try to do housework/washing when I have a bit of energy but don't put myself under pressure to get everything 'perfect'.

I have always made sure that I eat well, don't go to sleep to well and I do a weekly Pilates class to help with my muscles/bones/balance.

The biggest issue is usually work because I always found employers to be incredibly ignorant and lack sympathy when it comes to dealing with people who like me have long term physical and mental health issues.

As a part-time worker I have a lot of issues with bullied to ignore occupational health and GP's advice, pressured to do more than what I can reasonably do and managers trying to mess with flexible/remote working. I have also been ignored when it comes to training and career development/pay rises/promotion. And as my conditions get worse with stress and brings even more chronic pain it becomes a vicious circle.

PIP is also a nightmare and mine was cut down (although my condition got worse) in a recent review.

An important step for me was to accept and be vocal about my limitations and advocate for myself, because I am fed up with the fact that society just expects people like us to function like everyone else or be penalised.

Is there nothing you can do in terms of claiming something, and to do less days or hours.
What do you do on the school days because you mentioned working until 3pm, do you use after school club, I just wondered how you make it in time otherwise.

If the Cons get in, I dread to think what life will look like for disabled people reliant on benefits. As a few posters have already highlighted the struggle that it is, to obtain in the first place.

Well exactly you only need to see people's reaction to PIP on here to see how people react to long-term pain .I'm not sure they really believe in it? I'm not sure .

Planning, streamlining and outsourcing whatever is possible. Unfortunately, this carries expense and a fair bit of mental outlay.

Dishwashers, air fryers, combi pressure and slow cookers, food processors are all useful tools - with some further planning, you can prepare and freeze both individual ingredients and entire meal constituents so that an evening meal can consist of walking in, dumping a bag of marinated chicken thighs and one of veg into the cooker and switching it on, then returning in 20 minutes to dish it up with the plates and cutlery going straight into the dishwasher afterwards.

Baskets rather than folding into a pile, then carrying up, then refolding or hanging things. some things drying on hangers on a convenient hook or pole rather than drying, then folding, then carrying, then hanging. Most clothes to be the type that can sit in a basket until needed without extra work to make them wearable.

Easy clean flooring, ergonomic/free moving arrangement of furniture with useful rest points, things to rest stuff on, rails to get up.

Most of all, the planning frees up time to make decisions when you're exhausted and the actions are the least effort possible.

Thank you again everyone for the helpful replies - I do need to get more organised and meal prep/get more useful rotas going I think - I have just become bogged down and haven't been able to see how to get started.

In terms of school pick ups/drop offs I'm lucky that my husband works from home when hes not on business trips and I work 5 minutes from my children's school so we swap them between us depending on who can do what and when if not its breakfast and afterschool clubs.

I don't get any PIP/benefits, I was rejected because I wasn't deemed ill enough so no support there in terms of reducing hours etc.

I am definitely going to buck up my ideas and look into a cleaner 😊

Do everything you can to make your and families life easier , you'll get no thanks trying to save the country money . 💐

Timely thread. I was thinking about this. It’s absolutely crap having no real spare energy, no choice about what you do.

No choice about going to the cinema or whatever. It’s work, cooking or sofa. Oh, some therapies- exercise/massage to keep me moving.

I plan with almost military precision when travelling. I am going away soon, and will be requesting assistance at the airport. I am not struggling if help is available.

Can I join the club? Today my hair is falling out in big clumps due to the immunosupressant drugs. My head knows its better to be alive and bald rather than dead with a fabulous hair do. But some days are harder than others. Today is a hard one.

I have a lovely collection of headscarfs@TheSoundThatIWasHearing . When I cannot manage to do my hair, due to lack of energy, pain, I just put one on. Quick, and easy, and there is always one to go with whatever I am wearing.

I find it really bloody hard. I have two kids and work part time. Am a single mum although their dad is present and a good cop aren’t it’s strictly 50/50.
i use my pip to fund a cleaner and laundry service.
my disability means I can’t drive so have to use taxis or rely on unreliable public transport so often feel like I’m at the mercy of others to help me keep everything together.
i have an enabler once a week who helps me to ‘reset’ sort kitchen, put away laundry etc, have kids with extra needs so we also do their bedrooms.
i had OT assessments via social care and have various adaptations and recommendations to help make life easier and they have made a difference.
there’s more that could be done but I’m so worn out from advocating for myself and my kids for so many years with so many different people .

if i had a partner / reliable partner or family nearby I’d guess that some of these jobs might be absorbed by them.
i also use prepared healthy meal delivery services when im feeeling flush but often resort to takeaway when im knackered, especially after work.
i don’t feel like the best parent if im honest and my needs are really increasing with age.
im very sad about my limitations and it can be hard to pull myself out of the doldrums when im in a flare up or particularly tired or struggling with work, kids’ needs etc.
sending solidarity to all mums in a similar position.
Support network, fellowship and community are really key even if it’s just online

I’m a type 1 diabetic. It was manageable in the first 10 years and before I had children but now I really struggle. The pregnancies took a massive toll on me, I don’t control my sugars as well as I would like because every day is chaos (work FT, 4 and 1 year old who is currently having a horrific sleep regression). I got a letter last week to say I’ve got early stage retinopathy. I’m exhausted.

I don’t manage. My house is getting worse and worse in terms of clutter.

I hire out what I can, but the nature of my disability makes that difficult. Actually letting people into the house is risky so mostly I just get lots of deliveries and try to manage the inside myself. I have hired a whole team of people to take care of the outside.

I have this fantasy of just starting house again with an empty house and planning it perfectly for illness. I can see what it would look like, I just don’t have the energy to get it there.

I have a chronic joint condition. This is what I have in place:

did a massive declutter four years ago, operate one item in then one item out policy now for everything
cleaner once per fortnight
lightweight cordless rechargeable hoover
friend does gardening
dog walker
broom handle rails on both sides of the stairs - much easier going up and down stairs with rails on both sides
seat in shower
no ironing, I gave up ironing years ago and no one has noticed
Towels and bedding goes to laundrette for service wash
supermarket delivery weekly
artificial grass - no mowing, much easier for friend who does garden
ready meals for three out of seven days - ones we like
takeaway one evening per week
Every afternoon lay on sofa for one/two hours
automatic car - easier that a clutch to operate on my body

I work full time but I’m freelance, so I’m in charge of my own time, work from home and nap during the day if I need to. My partner does all the cooking so I never have to worry about that. I walk the dog every day unless I’m really crashing as I find the fresh air helps. We have pretty low cleaning standards (every week is the most frequent, usually less) and share the chores. Oh, and I don’t have kids, I don’t want them but I don’t think I’d have the energy even if I did! I do see friends and socialise but I’m also not afraid to cancel plans if I’m too exhausted.

My husband helps when he can but works long hours ""

I don't have a husband who sees his role in the family as "helping".

It sounds harsh but it's true. Especially true when unfortunately illnesses/disease fuck up lives, and have to be reacted to and adaptions made to lifestyles etc. I hear people who say "I have to work as we need the money. How will we pay the mortgage?". Well unfortunately some people just can't work - what if they were admitted to hospital for months? Or had to have an operation? Sometimes with chronic conditions and illness, choices in life get taken away, it's fucking shit but you have to accept and adapt, not ignore and end up making things worse long term.

I dislike the term men "helping" in the family responsibilities (it's a bit like when men "babysit" their own children!) Even more so though when one parent needs extra support though.

Just a tip if you can't afford a dog walker. I hire an enclosed field, it's a cheaper alternative but means I can just sit on the bench while the dog runs about like an idiot.

I also make lunch for two days each time, so one less thing to do, every other day.

Fellow lupie here…. I work term time (thankfully!!) which gives me regular breaks to rest. I have a friend who comes to help declutter/clean etc… game changer honestly!!!! Try again for PIP. I’ve claimed it since diagnosis and found it really easy in the grand scheme of things!!! Just kedo on pacing and remember you are only one person!! And count your spoons!!! (If you know you know!!!) sending hugs

Ah man, that’s so hard OP. I have what my rheum called ‘pre-lupus’ (UCTD) and that’s bloody bad enough! Looking to this thread for tips.

I have an as yet undiagnosed chronic illness and am on long term sick leave.
I am not coping because the NHS machine is moving so slowly its going backwards. I'm lucky in that I'm on full pay for 6 months and then on half pay but I dread getting to the 6 months and am saving every penny I have.
I cannot afford to give up work for another 5 years, I am single and am only able to do anything for an hour a day. After that my leg refuses to work any more and the pain starts which is excruciating.
I can't stand to cook so just have to eat stuff out of packets like salad and fruit.
My GP doesn't give a shit, it's a major undertaking to wash my hair.
I am not coping.
Today I hoovered half my bedroom and dealt with some rubbish and after that lay in bed for hours trying not to cry with the pain.
In fact I did cry for most of the afternoon because it's another month at least before I can see orthopaedics for an initial assessment and two months before I can get the MRI scan.
I'm NHS staff and the only full timer which means the whole department is struggling to cope with the short staffing and patients are not being seen in a timely manner.
I'm desperate to get back to work but I think it's going to be at least 18 months if not longer and then more waiting for any surgery I need.
Everything is a massive battle, GP doesn't want to give me more pain killers, won't do an xray in the interim, has never even seen me.
I've been incontinent in bed several times because if I'm having a very high level of pain I can't actually move.
I'm absolutely desperate.

@Gettingbysomehow sorry to hear things are so hard right now 😢

@Iloveburgerswaymorethanishould sending some lupie hugs back and yes always counting my spoons 😉

I think I will try for PIP again just need to build up the confidence - it was a bit of an ordeal last time!

@YesItsMeYesItsMe I started at UCTD before differentiating hope you're coping OK

Currently looking at cordless vacuums, airfryers and all the other fab ideas from other posts 😁