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. I usually push myself until I can't anymore and end up in bed unable to move for days.

The only thing I do that I find helps is a load of washing on before I go to bed, and hang it out in the morning before i do anything else.

I take each day, as it comes. I do not push myself, at all, and rest when I need to. I have no pets, as I see no reason to make life harder for myself. I eat as well as possible, because the body needs nutritious food, that will provide energy, and help healing. My home could be cleaner, and I am thinking that I may need to employ help in that department.

I retired early, I’m lucky I could and my condition didn’t start till I was 50. I have learned to say no to stuff that I do not want to do. I really feel for people that have small children and have a chronic condition. I would try and buy a cleaner. I had one and she did very few hours but it really helped.

I would concentrate on getting rid of as much stuff as possible, be utterly brutal. As soon as the kids are old enough they help, do not replace the dog when it’s slips off this mortal coil. Use rock solid contraception. How old are your children?

I work full time with an energy-depleting lifelong disability with a family so I can sympathise (and no thanks given to the stupid PIP system). I have tried resting and taking it really easy but found it didn't make me feel better and my house and I just became a mess. My approach now is to try and exercise daily even if it's just something small, and to get outside. Fresh air makes me feel more awake and I feel better mentally. I break housework into chunks and do a couple of little things on top of laundry etc daily - like dust a room or change a bed. If your kids are old enough get them involved - housework is everyone's responsibility in my home. The kids have 'helped' since they were walking and now are old enough to run the hoover round and dust or help garden. They also put on their own washing with supervision. I don't want them becoming carers, but the point is they are learning to looks after themselves and take responsibility. They often miss crumbs or do a job badly (because they are kids) but it's steps in the right direction! I have also learned to accept I will have bad periods but just pick myself up again afterwards.

The only way I have got out of a cycle of constant burnout and crashes is routine and pacing. We have a lot of family help, for which we are very fortunate, and are also able to afford to have a cleaner once a week. My husband picks up a lot of the slack.

My advice would be to look at what you can cut back on. Are there things that you could do to a 'good enough' level instead of the level that you currently do. If you currently shop in a supermarket could you do an online delivery instead. If you have a partner is there anything they could take responsibility for that you currently do. Could your work do anything (reasonable adjustments) to make your time at work less draining.

If fatigue is one of your main symptoms, could you see if your GP could refer you to a fatigue clinic? I requested this after my CFS diagnosis (I have other conditions too but it's the fatigue that really gets to me) and I found it really helpful with learning how to pace appropriately, including challenging myself and learning to read my body's responses.

It might be that you can just make a few small changes that overtime make a noticeable difference.

This sounds really tough for you OP. Wishing you all the best.

I pace myself and take a lot of supplements. I try to do things on the days I feel able to and just accept when I can't.

Thank you all for replying lots of good suggestions 😊

Kids are DD13 so teenage and rebelling (but is a lovely girl underneath the hormones) and DS9 who is currently under assessment for ASD so getting them to do anything to help is a nightmare and involves a lot of battling alongside DS's already challenging behaviour.

Getting a cleaner is definitely a good idea I think honestly I've felt ashamed but know it's something that would help.

Having a dog does bring its challenges but gets me out of the house and gives me my heads pace time which I desperately need - I honestly call him my therapy dog.

And my god yes a clear out - I just need to find the energy!!!

Sorry to hear you are all struggling too xxx

Lower my standards, pay for help where I can, do what I can in the way that I can (think sitting on the floor to hoover, only using the oven when DD is in so she can get the food out) and accepting help when it’s available. I consider myself very lucky to be able to wfh almost full time as that saves me so much time and energy compared to five years ago…

I employ the use of my slow cooker, and airfryer constantly. I make meals, and then freeze. There is always something precooked that I can take from the freezer in the morning, and just have to steam rice, pasta, and vegetables to go with it. All meals are low effort, and nutritious.

Sorry @Winglessvulture missed your comment - I have had sessions with the 'wellbeing service' on pacing etc I just honestly feel that my life out paces me all the time if that makes sense!

I am using online shopping etc too

Xxx

My kids are grown up now.

I had a cleaner and an ironing lady.

When ExH got fed up with doing the garden we got someone to come in and do the garden as well.

Can't recommend a cleaner enough to be honest. We had to stop during Covid and the house turned into a shit tip so fast.

I also used a slow cooker, especially in the winter - dump stuff in dinner is ready when you get home. Meal plan with two ready meals/packet pizza a week on days you know you will be tired.

Also - laundry - your kids are old enough to be taught to do their own.

I bought four indoor airers one for each person. Everyone got their own laundry bin in their room.

Made and laminated instructions on how to use the washing machine. Gave them two ikea bags each.

ExH cooed quite well, the kids needed some reminders how to use the machine but honestly it worked really well and took a major chore off me.
Also meant they stopped asking whalere's my PE kit?

I left my job and went freelance because my line manager was always on my case and occupational health couldn’t put enough in place to support me. I manage my hours so that they are less than term time - I work 30 weeks of the year and that has been a game changer as I know that even if I’m very tired it’s not long until I can stop.
I don’t really go out socially any more - there’s not enough in the battery to sustain that and work and family and everything else. Luckily my friends are very understanding and are quite happy to come to me.
I sleep. A lot. 9.30 is bedtime and 6.30 is morning. I have to stick to it religiously as otherwise the wheels come off.
I mainly live a quiet life and have come to accept that there are many many things totally out of the question. But there are also many many things that I am able to do and enjoy so I focus on them.

Get really good at resting. I did a fatigue management course. They advocate actively "zoning out" several times a day. Mindfulness apps were recommended but I put on a rainforest sounds playlist instead, put phone down and set a timer for 10 mins. Very important to get the first one in early, within an hour of breakfast, and I'm meant to aim for 5 a day. Teens are just used to this. My little rest before cooking dinner is also vital.

The whole objective with fatigue management is not to push yourself too far so if you are crashing out, you're doing it wrong. It's impossible to avoid sometimes but schedule in your rests MORE when you have a lot on.

Another thing that helps is an utterly non judgemental, supportive husband. I achieve a lot more in the long run because I have the grace to rest when I need to.

I actually don't like having a cleaner. I struggled with the pressure to tidy back every Wednesday. I'd rather be able to work at my own pace even if it means I have more to do. But this probably depends on your pain levels.

I try to push through. I crash a lot. Lots of time spent in bed.

@Colombie how / where did you access the fatigue management course?

@Sorrythatnameistaken

I have Rumertoid and OestoAthritis

I am lucky going past my house every so often i obviously take advantage of that
to go into town,

I regularly participate in arts and crafts mediation creative writing and listen to interesting talks on all kinds of subjects online too
Eventbrite.com website is really good

London feminst drawing group is good
Its a website online and Facebook page,

Last Tuesday society based in London but often do fascinating talks on the Internet too,

My mental health well being is everything to me

Participating anything creative is essential for me for the therapeutic effect bonus benefit..

I also have cortisol injections in my knee every so often at my local hospital what a difference its made
I really think i would have ended up in a wheel 🛞 chair otherwise
and with the kind of of family ive got ,
I would be screwed on my own
😱 frightening thought...

@Sorrythatnameistaken

I have Rumertoid and OestoAthritis

I am lucky going past my house every so often a small community bus goes often past,
i obviously take advantage of that
to go into my local town centre place..

I take shortcuts where I can - I pay cleaners to come in once every two weeks to blitz my house. I pay a dog walker to come and tire my dog out with pack walks. If washing is getting you down why don't you do a trip to the launderette once a week - washing machines are huge so you could wash everything and dry everything in a few hours. I also have Gousto boxes to take all the thinking time out of cooking.

One of the best tips that I got was to avoid the stairs. Never just nip up or down for the odd thing. Make the beds and get dressed before you first go down, I had a basket top and bottom which get filled with odds and ends, taught the family to carry it up if they were going. Surprisingly few of my journeys were really necessary. If you find yourself forgetting then put something accross the bottom of the stairs to remind you.

That is a good tip about the stairs.

I do wonder this as some people seem to be under the impression we are entitled to live pain free for the rest of our lives and it just doesn't happen . There are some people who do the pain killers for years and I don't know how they cope 💐.

I have a few chronic diseases and I deal with it by having the world’s most wonderful husband . I ‘retired’ at 48 , I walk the dog , do the washing , shopping and cooking and he does all the house cleaning , gardening , DIY etc as well as working ft ( from home) to keep us in the style to which we have become accustomed.

I have Crohn's and fatigue comes and goes depending on how well I am. Lots of good suggestions already around cooking and cleaning. I would echo to buy in any help you have the budget for, e.g. gardener/cleaner/dog walker/ironing etc. We have a dog walker some days.

A couple of things we did - bought a small, rechargeable hoover that is really light and so very easy to just get out and use. Child can also use it. Some people have robot vacuums/lawnmowers too. Cash incentive for child to take on tasks and help.

We have a separated laundry basket so when it's time for a load, it can be thrown in straight away.

We get our supermarket shopping delivered, Amazon Prime might also make things easier though we don't have that anymore.

I work full time but usually from home, so I can sometimes have a lie down if I'm feeling awful.

You've probably had all this checked, but I've found that sometimes the fatigue isn't due to the illness itself. The meds I was on made me really anaemic, so I would suggest having that tested. Some autoimmune meds/conditions can also deplete B-vitamins. Vit D deficiency is really common and also thyroid problems (I've had all these!).

@OliveK through my GP. It wasn't a big thing, just 6 phone calls from a nurse with very little content in a sense, but mentally I found it very helpful.

It was very refreshing not to be told I just need to do more exercise etc.