If you're chronically ill how do you keep your spirits up on days you've had enough?

[AbsentmindedWoman]

Fatigue is kicking my arse, and so frustrated. I'm light headed, slightly nauseous and reading anything longer than a few lines is tough because the words swim round the page Lying down feels far better than sitting up in a chair, from a queasy point of view, but I AM BORED of lying fucking down.

Just having a moan really as I'm fed up of fatigue/ pain/ random unpleasant symptoms.

I know there are loads of us on Mumsnet who are chronically ill with various conditions. How do you deal with your frustration and irritability on difficult days?

Audiobooks?

It’s tough I know OP, I was having a grottier than usual day today too. Pain and fatigue are my worse symptoms.

Really important to try to not overdo it on ok ish days, otherwise I know I pay for it.

People don’t really understand it, especially when it’s an invisible illness and you “look” fine. Very frustrating at times.

It’s constantly having to adapt to try to make life easier. Totally draining at times.

I tend to hide away from friends and more distant relatives, as I always say I am Ok, because I don’t want to worry them, but my close family know the true picture and put up with my irritation, that your right stems from frustration.

I never dreamed I would be in this position, but I am and have to make the best of things.

I never look to far into the future, and try to live for today, and keep a sense of humour.

Make a list of things that you enjoy, food you like to eat, films you like to watch, and when you’re feeling low pick something off the list to do/eat/watch. I think of it as my happy list, and it really has saved me on days when I’ve been unable to leave my bed.

Podcasts.

I remind myself that today, I only have to get through today.
If that seems too much, I just focus on the next hour, minute or second.
I try not to berate myself but speak encouragingly to myself - be proud of myself for small achievements even if it's a very little thing.
I do something comforting like wrapping myself in a blanket.
Music sometimes helps.

Sometimes I have a rant about how unfair it feels, too.

So sorry for you, OP.

My daughter is chronically ill (she's 15).

Our dog sometimes is the only thing that lifts her spirits on really bad days.

I don't know for all of us but for me the weather just compounds things.
I have struggled all month to get my pain under control, my eating is rubbish even if I'm not vomiting. I am constantly sweating so drinking all the time. All the blinds in the house are closed to keep our the bright and to top it off the bloody cats are all ill.
I too would love a few hours off, just from being such a miserable arse.

I just watch crap on the tv, surf YouTube, read the news and sleep. I do try and do this around people though (so on the sofa) so I don’t get too bored.

It’s shit though and nothing you can really do but rest until it passes

Music does it for me. Loud and spirit lifting. Usually classic disco so I can wriggle and sing loudly out of tune!

I've just started a CBT course for chronic pain. Only done one so far so the court is out

I find listening to audiobooks helpful on a bad day. Don't be hard on yourself. I know that is tough as I start thinking negative thoughts about myself on bad days. When fatigue really moves in I have to constantly remind myself that it is not just laziness. I'm sorry you have to put up with this.

Audiobooks, trashy tv and simple games on my tablet on my worst days, knitting and crafts on my not so bad days.
There are always half price codes for audible to be found which helps.

I have a chronic illness, thankfully (and I am very grateful, I am in a better position than others) it has been managed by medication for several years.

But prior it was always chocolate, a good boxset or a barista made coffee.

DH cooking me a decent t meal also went down well!

I just try to think tomorrow is another day and I might feel less emotional then. I know my physical symptoms aren't going anywhere, but I try to distract myself from the anxiety, frustration, loneliness, isolation and generally crappy feelings by watching telly.

Music, tv, chocolate. Distraction basically. Too much time to think is a bad thing for me.

I'm always worse in hot weather. Last week was not fun.

Take an hour at a time.
Read a book which I love and will either cheer me up or remind me of all the many positives in my life.
Watch a film.
Do charity work online so feel I've achieved something.
Cuddle my dogs.
Watch my big dog being cuddled/used as a bed/duvet by the little dog.
Know things will get better.
🌻💗🎇🐈🌸🐕💖🐕

Sometimes its even too tiring and irritating to watch a movie or listen to something. On those days i just tell myself its just a small timeframe to get through and like other times i will bounce back. On other days i try to save netflicks series or movies to watch and tell myself im treating myself to a day off.. or a duvet day and try and look at it as a positive. U r giving your body the rest it needs. Dont beat yourself up. Realise this is the path you need to take to get well again and treat it as a well deserved break in bed. Its hard to stay positive and i will admit to just bawling at times but i dont panick now that i wont get better and ive stopped strressing about letting family down by taking time out. Everybody else "gets it" now and i feel happier about letting them get on with it. I now realise they can actually manage without me. Hope u feel better soon. Why dont you ask mumsnet for some good movies/book/ series ideas to get you through!? X

I try to grade my days, knowing if I'm kind to myself they usually improve (until I do too much)
Saturday did too much
Sunday, lay in bed, tv too much.
Monday, went to gp, back to bed but could watch reruns.
Tuesday, will be easy day and hope to watch new programs.

Today... i am drinking cold cans of lager in a bikini top and wide leg trousers - cant wear a bra cos it hurts hence the bikini top, cant take any more pain killers right now hence the lager to top up my pain relief (cant do wine or spirits) wide leg trousers because they were easily pulled on when my dd brought her friend home. Other days my approach is more holistic but today i dont even have the energy or motivation required for that ... gentle hugs cx

Thanks, everybody. It sucks the big one to be in this situation so I'm sorry to hear what you are all dealing with. At the same time, it's definitely comforting to not feel like the only one who gets hacked off with it.

Do any of you have any tips to manage feeling like this with a child too? I'm feeling so guilty.

@SheStoodInTheStorm I haven’t found anything to deal with the guilt of it whilst having a child. I missed out on 2 years of my 3y/o life because I was so ill from pain which caused depression and anxiety. I really couldn’t do anything with her.
She was the reason I finally pushed myself to go onto medication I didn’t want and now I’m wondering why I didn’t do it sooner (well I know why, it was fear).
I think you just need to do what you can. On good days be with your child and ignore the cleaning/jobs round the house

MS sufferer here with fatigue. I give myself over to it and sleep. I don't think about how shit it makes me feel and how I can't do anything when it strikes. I just let it do it's worst and sleep it away. If I feel it coming, I stop what I am doing and try and rest it away.
I then claw my way back to the surface with little things.
I've had some dark times. I don't want them back.

I have RA, sjogrens, PTSD, bipolar and recurrent MRSA infections. I could deal with any one of those issues but what pisses me off is when the physical ailments die down and then I go manic as I'm so excited I can move and end up needing tranquillisers! It's barely ever perfectly balanced. Always like a wonky seesaw.

So I make lists. Lists of what food I need to get delivered to see me and my kids through it. Lists of good memories, lists of things I'm grateful for. The most important for me is a list of things I need to achieve that day/week and then I prioritise them and do my best to do at least one. So today it's

1-Feed the kids
2-Put kitchen stuff back into units ( new adapted kitchen currently being fitted)
3-Buy tiles
4-Research microwaves
5-Sort washing ready for machine being plumbed in.

I have ordered just eat pizza to be delivered at 6 and an Iceland delivery of food for the fridge freezer to come for the morning . It's a treat but we have lived on microwave meals for 8 days due to building works. As it's a treat, I can get my 3 kids to earn it and take a box each off the table ( tins/plates/ under sink items etc) and sort them in the cupboards I have pointed to. The tiles can wait, it's hardly a big deal in the grand scene of things. I've told the guys just to paint the fresh plaster white in the mean time. Microwaves I can look at on my tablet and narrow down my choice and the washing can wait for another day. We have clean clothes so it's really not urgent.... il just leave it on the landing.

On the plus side our occasional pizza night is followed by a movie so I can get time with my kids without being active as such. We also play digital games like words with friends and proper games like scrabble .

I’m in EXACTLY the same situation. Could have written this. Just got out of hospital with aseptic meningitis again (third time; caused by a medication I really need so they keep trying it different ways but we have to give up now because it causes this every time). I’m in bed because I just can’t do anything else. So... what do I do?

For me, there are levels. So first level of what I can handle is instrumental music. Maybe not even classical music (might be too loud with clanging symbols and big climaxes). I’ll listen to yoga style relaxation music or American Indian flute music and it can help me relax when I’m in pain.

Next step, regular music. Stuff I like that still doesn’t hurt my head or rile up nausea or anything. Just the songs that lift my mood.

Next level is audiobooks and podcasts when you can stand to listen to people talk. If you’re well enough to laugh (no breathing difficulties) funny podcasts or books can be SO good for you because laughing will raise the chemicals you desperately need whilst down.

Next level is TV I’ve already seen, books I’ve already read. If I’m feeling well enough to look at books and TV, at this stage I’ll often watch or read old favorites. They cause you to feel different things than watching something new - more comfort than distraction.

Next level, watching and reading new things. This is when I’m ready to be distracted and I’m well enough to focus on a screen or a book. If you have an e-reader, look into online library lending which can open up a world of new books without leaving home.

Also, I try to go outside even if I can only walk a very, VERY short distance. I tell myself not to compare myself to the people doing 10,000 steps which is a mountain away from me at the moment, and just focus on the fact that five steps outside my door and back to get the mail is a HUGE accomplishment.

Also, this is different for everyone, but sometimes the only thing that helps is focusing on the fact that is is NOT the worst it’s ever been. Last Wednesday I was so SO ill in hospital, and every day since Wednesday has been better, so I’ve been constantly reminding myself of that.

Let me know if you’d like music or podcast recommendations, and I do hope you find something that works.