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 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.

And this is what is so very wrong with the PIP process, it makes me so mad. I would say maybe get some help with completing the forms if you haven’t before , CAB, have a look online and be very honest, like you have on this thread, you’re struggling with a serious, long term chronic illness and really could do with the extra financial help.

It's so hard isn't it. I have Myasthenia and my friend has lupus.

My top tips

• look for a home help not a cleaner. Explain you are ill and the house might be messy when they arrive and you need someone who can tidy and clean. Mine also does the laundry.

Give the children bits of extra pocket money to help with jobs. Mine do quite well out of this, but it feels fair to reward them

Plan activities for the children where they can get nicely worn out and you can rest -climbing lessons have done this nicely for mine.

Be kind to yourself. You aren't the person you would be if you were well. Most people won't understand what you are coping with so if they judge you that's on them. Just stop judging yourself, you are doing your best.

Take sick leave when you need to. I used to power through when I was sick but I have realised it is important to take those rests.

Find a gentle hobby you can do when resting, so you have something that is yours. I love adrenaline sports and running but they are totally out as an option now so I have taken up sewing

Find family things to do which work at your pace but are fun for the children. Good things we have done recently - boat trips, train rides, punting

Build a network of people who do "get it". I have internet friends on Facebook/insta now who live with lupus/myasthenia/ME etc and it makes me feel so understood and less alone.

Minimalism and batch cooking are helpful plus hiring a cleaner. I get full PIP and will be aiming to work from home in the next couple of years. It's shit OP and I hope life gets easier.

Definitely look into lifestyle changes you can make around diet, exercise, meditation etc.

Also losing my hair due to immune suppressants. Really crap. It's gone a vile texture too.

Although before that I was on steroids which made me huge, and I hated the amount I was judged and even mocked by random people.

Oh where did you find them? Any tips?

My hair is thick so although it is falling out it is ok for now. I've been making lots of big silky scrunchies so it is easy to tie back/disguise the mess (my arms are very weak so I have to rely on DH or my daughter to untangle it /style it)

Oh gosh mine too. Which medication are you on? Mine starts falling out about 6 weeks after each treatment.

Mycophenolate, how about you?
I find hair everywhere! Huge clumps when I brush it
I am going to the hairdresser once a month for a deep condition and blow dry, not sure if it helps much but for a few days at least I feel more civilised!

I've claimed 'Access to Work' & I get 5 hours assistance to help me run my self employed business

I have a super supportive husband and DD despite living elsewhere helps with house admin/organisation

Awaiting a PIP decision

@CassandraWebb I got some head scarfs from Amazon, and others from the market stall. I also got some from the link below. I just put those ones on, without having to tie them, good for those days when needing ease of movement.
https://www.amazon.co.uk/osvyo-Bamboo-Chemo-Headscarf-Women/dp/B09DG666XR/ref=sr_1_3_sspa?crid=1UZ2D2E62BZRY&dib=eyJ2IjoiMSJ9.bKLugaTyvg2nhtHZhhs9ey-JEY4LTJvCUy7tk-Fv-yDVJx4lZ8t3fBzS-YYx_NdNHkXhfh7YHVS1RbwMhhPHsqvjtYybz4Qaw89TmjhF6NMuTZHywyJNfBLlxprCeVJMIMqZGDssY_L4tKxfh595HPFmZX3MtT8Qb36dNatTcTKyCynUC5wqHDG2TBli9wdbSAgtDKxhIHbG3bVgy57OtopUE9aL96_vjOPn4B-Av6LaWIfXTxruF9IwZDMNW5iqaNe0AppQACa5VuBN1w_Ff-CK7WAvElsZlaomaikrBZE.MpEU2tl59J93mSROdHtS02JyjFgGyPbtUmuOwm-rBSY&dib_tag=se&keywords=headscarf%2Bfor%2Bwomen%27s%2Bhair&qid=1717103051&sprefix=headsca%2Caps%2C176&sr=8-3-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&th=1&psc=1

Thank you @LadyKenya

That's a brilliant link for the head scarves. Can I ask people if the hair loss is permanent? Will it grow back between treatments?

If you have trauma of any kind, especially childhood trauma do some emdr therapy or something. You’ll be amazed at how much extra mental energy you have once some of these emotional burdens are lifted

I have endo/Adeno - I can't remember the last day I was pain free. Some days it's debilitating and I have to get admitted to hospital for IV pain meds.
I work in a senior corporate role, I work long hours - how I still have it is beyond me.
Take 12 Panadols daily without fail, take opioids when needed, micro dose them at work. Drink loads of water, fuel my body with good home cooked food, avoid junk as much as possible but listen to my body and give into cravings.
Get outside in the sunshine daily (I live in OZ), gym 5-6 days a week - listen to my body and rest if needed.
Keep our house clutter free, tidy as you go, when it gets too much throw money at it. Get a cleaner, gardener. Have a DH who pulls his weight, we both cook clean - if I cant physically do it, he does.
Spend as much time in water as possible, hot showers x2 day, baths swimming as much as I can and when weather allows. Infrared saunas every couple of weeks, massages monthly.
The minute I get home, get into PJ's and bed no later than 9pm, generally I'm asleep on the sofa by 8:30.
I'm constantly shattered.

I am not coping 😭 Don't want to think too hard about it before I go to bed - the bed that I've been spraying with 'freshening' product rather than changing it - but am feeling for you all

To those who are still doing push/crash ... I know it feels like the only way, I really do. But stop pushing or you'll end up like me!

With difficulty! Work FT 40hrs as single and not been able to claim PIP. Wish i could drop to 32hrs as it would make a difference but...

Hashimotos, stage 4 endo (waiting for operation), autoimmune neutropenia and chronic urticaria. I'm on a bone marrow stimulant and a biologic (Xolair)

I do my weekly meds on a Friday so I'm not sick for work but it does mean Saturday is usually a write off

My priority is work because I need to pay the bills and everything else comes after that

I batch cook when I can so the freezer is full of homemade ready meals and keep easy stuff in like soup. For cleaning I use a timer for 20-30 mins and only clean for that long. Changing bedding sometimes is exhausting so I'll change the bottom sheet and pillowcases one day and the duvet cover the next, or use a top sheet so you can change the duvet less often

One evening a week I play netball so I nap after work then go to that and then fit in whatever other exercise I can at home (I do spin and weights)
Permanently exhausted

You poor thing, I'm sorry 💖

Ditto on the hair loss and horrible texture! (Two immunosuppressants currently) I also have permanent scarring Alopecia patches now due to the Lupus. My last hairdresser stopped working after covid and I haven't been able to face going to someone new since and having to explain so mine stays in a ponytail permanently 🙄

After years of pushing myself and only getting worse (both in myself and in terms of what was building up round me) I stopped.

Prioritised resting and looking after myself.

Some stuff went to hell and there were some temporary measures I used to get me through that time. (From things like only using paper plates for a while, to having a budget for takeaway/ready cooked foods so I could take a week off cooking at the start and then having times I would not cook for say a long weekend to give myself a break).

And some energy started to come back. So when I have some energy, I hop on it and do a burst of stuff. But I always stop as soon as I feel tired.

And as I started to regain energy, I really invested some time and money in redesigning how I do things. There’s an element of just stopping doing some stuff in that.

But there’s also things like buying lighter pans and crockery, using a mop with disposable heads, making sure I organise things in cupboards so I can slide things not lift them, making sure things are stored as close as possible to where they will be used.

I also stopped doing things like batch cooking where you spend a long time doing a lot of something at once. Committing that amount of time to doing something in a block ended up really draining me. Partly because doing it encourages you to push past your tiredness so you don’t rest when you need too and partly because things like repetitive chopping or setting up/cleaning “labour saving” gadgets is really draining too.

I instead focussed on how to change my cooking style to a combination of quick, minimal effort and maximum nutrition.

And it’s been pretty miraculous in terms of my health, energy and the amount I can get done.

I also bought a mattress topper and put the sheet on that rather than the mattress (well, I put a sheet in the mattress too but that gets changed twice a year). Much lighter and easier.

I’ve been looking at this just this week, my friend recommended it. I’m in the ‘my trauma isn’t actual trauma’ phase. But also heard that when you’re 4 years old, the worst thing that’s happened to you is still the worst thing that’s happened to you. So that’s something. But not sure how tapping would help.
And also been struggling to see the connection between trauma and actual physical disease - wouldn’t rheum have mentioned this if an actual thing?

I have EDS and I had some nasty cancer treatment last year. I work full time in a busy job. No kids though.
Things that help me....
Wfh on a Wednesday to give me a break from the hustle and bustle.
Keep at least one day of the weekend free for a pj day.
Grocery deliveries and careful meal planning.
I can only exercise in mornings due to crap energy levels so I bought an exercise bike and start work a little later those mornings.

Oh I am sorry, that's so tough. It feels like an extra blow on top of everything else doesn't it. But from talking to my hairdresser she helps quite a lot of people whose medication or illness has affected there hair so please remember they will be used to it and any nice hairdressers won't judge

@CassandraWebb definitely not fun and sorry you have similar issues. You're absolutely right though if I found a decent hairdresser they would have experience and it would probably be something relaxing to do!

And thank you again to everyone who has posted with all your helpful replies and personal experiences. It's not nice to hear that so many people are struggling so big hugs to you all 🤗

This thread is full of posters really being honest about how hard it is living with a disability. The everyday struggles that they encounter, just trying to do everyday things. The difficulty for some accessing help, like PIP, which is so difficult to obtain, and would go some way to easing some of the strain.🌻

Reapply for PIP. Get a professional to complete the form. Appeal. Most only get it on appeal.