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!

Yes it's the reality of lives with chronic illness. Yet so many people I know with fluctuating/chronic conditions can't get pip even though they spend big chunks of their life bedbound or very limited. I am lucky I have a reasonably well paid job that is very sedentary (and supportive), although I did have to drop down from a more senior role due to my health.

I also find that many people get little sympathy from the outside world generally, partly due to ignorance about the conditions. Even though they can be very devastating or debilitating friends and family don't have the same visceral reaction to a diagnosis that they do if someone is diagnosed with (say) cancer.
DH is often essentially my carer for chunks of time , but noone in his family seem to understand what that means for him (my family are mainly medics so have been much better, but most live overseas

The pain sounds horribly tough , I am glad you have found a strategy that works to make it manageable at least

I don't know how so many of you keep working - that must be so difficult. You must also have fantastic employers - I'm self employed so don't need the endless hospital trips signed off and on bad days I can stay in bed. I'm torn between thinking how lucky I am to have that flexibility and feeling pissed off that I do not have any sick pay. Every appointment and any time off impacts on me financially.

Yes, I agree about the difficulty in claiming PIP, when a condition fluctuates, from some of what I have read on MN. That is why there is specialist help available to guide when filling in those horrid forms. I hope that if there is a change of Government, they will make the process less daunting to engage with. People who are struggling so much, do not have that extra energy to deal with the stress of the application, in so many cases.

So sorry to hear everyone’s struggles.

CFS is one of my symptoms. I honestly don’t know how anyone with kids and a job manages, hats off to you all. I had to “retire” early last year luckily for me with financial support from my DH. I just couldn’t continue working, it was depriving me of any energy for non-work stuff and I was struggling with it mentally too. Recognised that anxiety was another symptom and I got help from my GP.

Pacing of course helps, although that must be tricky with a young family. Gentle dog walks as you do. I watch an hour of mindless Netflix to zone out too because I do find it hard to pace in its purest form. Remember if you’re feeling v tired doing something, you’ve gone too far so just stop.

Definitely echo previous foodie suggestions - I batch cook on a “good” day, and cook around forecasting for bad days. So, if I am doing something on a Sunday I know the fatigue will kick in on Tuesday - I’ll make a chilli for Monday, and enough for a quick reheat on the Tuesday. My slow cooker has come into its own - the relief of knowing dinner is sorted really helps. My air fryer is used a lot, chicken breast with some dry seasoning and a quick salad. I get Ocado deliveries because they bag up the food. I also get meds delivered on repeat.

If you can afford a cleaner, that would be a great help. I can’t, but now I’m not working it’s not so bad as I can do things bit by bit. I make sure I keep our spare room clean and tidy, so if my DC want to come home for a weekend there’s no last minute cleaning rush. DH does all his own laundry and I don’t iron anything of mine - jersey material is my friend. Washing basket helps me move stuff up and down easily and I set myself small household targets - today I’ll do one load of washing/or tidy the dining room/or clean one bathroom..

I never do anything socially during evenings and anything I do during the day has to be planned with rest either side. So I am v selective! Luckily my closest friends are very understanding and know I need advance notice.

I let my DH do all the driving where that’s possible and I quite often use that time as a passenger to zone out with my eyes closed and some deep breathing.

I can’t compromise on personal cleanliness. Have to shower and wash my hair every day, but I’m lucky in that I can rest for a bit afterwards before I crack on with going downstairs. Again, I’m lucky, but I’ll often have a late afternoon bath as well with Epsom salts for my aches and lavender or something relaxing.

Talking of stairs, we have one of those stair baskets. So I just load that up with whatever needs to go up, rather than trotting up and down. I use the downstairs loo during the day. Try to avoid going up and down when I can.

No PIP or financial support here, but when I was working I did consider access to work for a taxi to the office when I thought they were going to stop my wfh option.

I was on steroids and mycophenelate for years and my hair fell out in great clumps as well (and the steroids basically turned me into the moon). It grew back when the cellcept dose was dropped but it’s now really curly! Unfortunately the mooniness hasn’t quite gone away but at least my kidneys hate me less!

Mine will work around my hospital appointments and have increased my sickness triggers
I don't have much choice as there's only me paying the bills

I feel very lucky. I have a public sector employer so they are very switched on about disabilities and I have very good sick pay. I can also mainly work from home. My old job was too much talking (which makes my speech slur /swallow to) but my current one is largely research so works well with my condition.