Existential I don't give a crap syndrome.

I appear to be suffering from this. I think it's all part of the PsA. I feel like my whole brain chemistry has changed. I woke up one morning...a million years ago, and was suddenly struck by the complete futility of human existence. Weirdly, I don't even feel particularly depressed!

I think its that I am totally exhausted. Everything just takes up too much vital energy. I go through the motions of doing stuff, but really, I just can't be arsed.

Projects that used to take me a day to complete now take me a week. And then I start to think...why bother doing it at all?

I always come across as so cheerful too.

Anyone else feel like this?

73 Replies

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  • Absolutely, I spent thirty five years of working with the public and now that I spend so much time alone I realize I like it.

    Someone one said I am comfortable in my hermitage. Great saying .

    We spent the day celebrating mother in laws 🎉 Breakfast went from 8:30 am to 12 noon. I finally had my spouse take me home. Then dinner for two hours and I bought a birthday 🎂. She served it outside on the deck. We are talking her three grandchildren Andrea son. She says next celebration is at your place? Meaning upstairs.😜it seems you just cannot please some people.

    It is my birthday next Friday. It is Sarah's birthday 🎉 on the 30th. (Niece).

    She is thirty so special and will celebrate with her friends. I will have brunch with the kids and am tired of going out for this long dinners. I am so tired I just want to cry. Not depressed just pooped 😂.

  • Love auto correct lol . I find being with people is exhausting and I am simply to tired to care about anything.

    I am no longer interested in pretending.

  • Ditto

  • Ditto me too

  • I'm a farmer. Nearly 40 years of splendid hard outdoor work. I never thought I wouldn't be able to lamb a ewe or help calve a cow or howk tatties with a fork. It makes me so horribly angry inside. When I was diagnosed with RA I was in the middle of building the drystane dyke that I use as my picture here. It reminds me of something I have always loved and enjoyed doing. I finished building it after seeing the rheumatologist because I'm stubborn and won't take advice if it doesn't suit me. It took me absolutely ages! I had to find new, less painful ways to pick up and handle the stone but I did it. It took me days and days to get any energy back afterwards. I think the fatigue side of AI diseases makes everything we do even more difficult. Being low is tiring too. I hardly go anywhere as I'm not a people person. I'm happy enough if I only see and speak to Edward and the dog. I hate the shops. I haven't been able to drive for many years so I'm ( happily ) stuck at home on the farm. I get so upset about the tiredness, it's so invasive, so complete. I can't be bothered with cleaning etc and I completely understand the ' what's the point ' thing, the naysayers will have lots of arguments for making an effort, feeling better for doing it etc.... well, stuff that! I still do bits of cheerfulness but it's false and more pointlessness.

    I don't suppose this helps except that you two are now three......and counting.

    Susie

  • HU Susie. I am actually a people person but I do related to your response that I had to comment. I feel increasingly misanthropic as the AI fatigue hits me over and over. I'm hoping to undertake a PhD on Visualising the Invisible and the main focus would be on AI fatigue I think. But where to summon the energy to undertake a PhD - let alone apply for the full funding if need beforehand?! I think your beautiful dry stone dyke will have to be my metaphor.

  • Thanks for this Twitchytoes. I say that you should start the PhD course, don't even give a thought to where your energy to do it will come from, if you are sure of the course, you've got to, at the very least, begin the journey.

    I'm planning a new dry-stane dyke in the farm yard. It's needed to keep animals in and out and to shore up the Home field which is about 4 foot higher than the yard. I'm gathering stones from here and there at the moment and hoping to get started when the cows come into the sheds for winter......that will be in October where I stay.

    Fancy a challenge kid? Your course started/my dyke started?

    Just the start for now, even if you only buy a textbook, a new pen and a writing pad. I'll send off for a new walling hammer if you're up to it.

    Susie.

  • Yay let's go do it Susie. I have finished my draft proposal to send to the assistant dean and just have the small but essential matter of finding full funding to address now - starting with Arthritis Research UK - deadline in a month! 💃🏻🕺My dry stone dyking days never got started alas and too late now as arthritis in lumbar only allows for a light back pack with somewhere to sit or lay my weary head if need be. I walk the dogs daily and do basic Pilates though.

  • Okay Twitchy you're on. Are you applying in Scotland? I remember a few years ago plenty of things in the press about funding for Visualising the Invisible in Art, or something like that.

    I read some of your other replies. I'm 59. OA and RA. I've got OA in my lumbar vertebrae and it sticks out at the back instead of lordosis. It's been like that for 5 years and I've had to work out how to do jobs. The worst thing is that I can't stand up straight so I'm permanently leaning into the wind, at approximately 15 degrees from the main mast. But I'm not giving in, well not until it snaps or something. Back, not mast

    I'd shake your hand to seal the deal if I could reach!

    Susie

  • I think once you have accepted your diagnosis with all the limitations, all you can do is live the way that suits you. I can't be faffed searching for a life style I've lost .....much as I really enjoyed it.

    Now I get on with what what I can enjoy........regularly cursing the disease that well & truly wrecked my long looked forward to retirement!

    But hey....many are much worse off than me...or so they tell me!

  • Damaged it is my birthday Friday as well i will be 62 then,yesterday we celebrated our 34th wedding anniversary. It is hard being us and the i don't give a damn attitude is great and the older i get the less i care what people think.xxxxx

  • Wait until you get to my age Sylvi...by then you really won't give a damn!

    It's great .......and do you know, people really are a lot nicer after you've told them you have a very competent Rheumy to treat your RA....so you don't need their Input thank you very much! I know I sound like a mad woman...but I honestly just don't care!

    Happy Birthday for Friday.. But no mad dancing !

    I hope your back continues to improve!

    AC🍾🍸🌷

  • Thank you darling that brought a smile to my face. Thank you for the birthday wishes. So tell me are you a recycled teenager then. How old are by the way.xxxxx

  • What's a teenager? I'm far too old to remember!

    Enough to say I don't have to buy a TV Livence any more....so there are some benefits of being an Aged Crone!

  • That makes you over 80 darling thats a lovely age and if you can add answers like you did for me means your very young at heart darling.xxxx

  • No quite Sylvi...you don't pay for a licence at 75! But I'm getting on up there!

    But age is just a number....but looking &'acting younger than your age isn't all it's cracked up to be!

    People expect you can manage to do things that you couldn't do 10 years ago...let alone now!

    I'm off to the sunshine again soon...that really helps the ancient bones....whilst there, I'm hoping to arrange to go back for Christmas! As long as the drugs keep working of course!

  • Good for you girl.xx

  • I can totally relate to this, especially your last sentence. I'm thinking ahead to our next holiday in December. 3 generations away for a week together to the Lake District. Been doing it for about 7 years now and I love it but don't know how I'll cope this year. Can't picture myself walking for hours and helping prepare meals for 12 etc. Usually so active and in control but so tired right now that I'm dreading it already and it's months away!! Yup, I'm pooped but waiting impatiently for improvement.

  • Don't stress over it.....by the time December comes you'll be fine.....you must start thinking things will be OK....but tell the younger members of your group it's time you had a rest.

    Younger people forget we get more tired as we get older...a gentle humerous reminder always gets a smile & the help. you need...my favourite is..." You do the washing up...I'll just watch for now!"

    Happy restful holiday!

  • Thank you for the encouraging words. My family have been great. On our summer holiday together I really was at my worst. Could hardly lift my arms or reach up to things in cupboards. Bending down was just as bad. I felt that I had a band of servants stepping and fetching for me.My poor hubby had to carry my bag ( inside a carrier bag I hasten to add😊) because my shoulders were agony. Not my best holiday but the troops came through. I hope to be in better form next holiday. Fingers crossed

  • So you see you got through it.....& you will next time too.....especially if you try not to worry, I'm sure your family are happy to give a hand when needed. Altho I bet hubby could do without the handbag!

    When I broke my left arm recently & my right shoulder was playing up & the contents of my kitchen cupboards were all over the worktops because I couldn't put them away. Having previously been so controlling about being neat & tidy...I just laughed at myself.....& sorted things when I could. The world didn't end because my house was a tip.. ...& I learned a bit of a mess doesn't matter!

  • I feel as though I don't have the energy to care about anything any more. My friend has said I'm in survival mode - the little energy I have goes in to surviving and after that there is nothing left to be caring about.

    You are not alone xXx

  • I finally decided I was the only one who mattered & when I'm in dire straits I look after me & the rest of the world can go hang. Avoiding as much stress as possible really helps.

    Of course I live alone so it's easier than when you have a partner who worries about you.

    It's very therapeutic to stop cluttering your mind with things you have no control over!

  • I love your attitude!

  • Yes well it's an awful place to be especially when the brain just stops functioning and it takes away your interest in life. It sounds like you are exactly like I was and even though I'm on thyroxine it wasn't working 100% then a trip to the doctors and thet seem to think well your test results are normal so everything should be ok but they don't want to help you so what I did was to do some searching of my own and discovered the herb Ashwagandah ( works like Magic) I noticed a change straight away from day one. I was paying $30 at first then I found piping rock and I get two bottles of it for $12. Please let me know if you try it! I can't promise a miracle fir everyone but you don't know until you try these thing! Best of luck I'll be thinking of you and hoping you have some luck with it! Te

  • Absolutely . I go through the motions doing stuff because somehow I feel life ought to go on as normal but really so much has changed most of the time I can't be arsed. I used to be so energetic and strong. Now I just feel tired most of the time and so mind numbingly exhausted sometimes I can't do anything.

    All the time though I have a smile on my face and people think I'm fine. For some reason this is important to me as I can't stand being weak and pathetic and having people feel sorry for me. They have no idea what's really going on.

  • You sound like my twin Downtime!

  • Make that triplets! So sums up how I feel and act

  • Yes I am a worrier about how I am perceived by others. Its pride I think. And that comes before a fall! Had plenty of those. I hate being a victim. I have a friend who is always telling me I am a cancer victim and it really erks me! She means well though. I am also becoming very introverted because its easier than having to talk when I just don't want to.

  • Strewth! Quads!

  • Wow, yes this is me too! I had no idea others felt like this! I just don't seem to 'feel' anything any more. I feel life is passing me by and I know I should do something about it, but the mere thought of it exhausts me.....

  • We should start a club!

  • When the fog lifts..... haha we can start thinking up names for that club

  • Trouble is we will all plan to meet and then no one will turn up cos too tired!

  • 😂

  • Thanks everyone for thoughtful responses.

    There is definately a good side to not giving a hoot...caring less what people think is freeing.

    The bad side is the not having the energy to live. I don't mean I'm suicidal...though the thought pops up from time to time. No, I mean not having the energy or wherewithal to socialize, or do the things I one once loved doing. For example; I used to be a prolific poet, suddenly the desire has gone.

    I feel I'm not really living. Some of the sparkle and oomph has been bashed out of me. I'm only 55 for goodness sake!

    I think part of the problem has been that I have tried doing all the stuff I used to dolove (like wild camping) only to be thwarted by flair ups, swollen joints, and pain. Now my brain says...don't bother!

  • Yes I do so relate. I dread socialising just now and don't suppose this is going to improve. I'm 54 and am determined so I keep making my artwork very slowly and I keep planning the PhD - because this seems to be the only way to keep engaging with a wider world and I can undertake it slowly through my equally slow art practice. But my concentration seems very selective so I can't read the news, I can't read articles unless they hit the spot 100% now and nothing much does. Anything that challenges my brain too much gets cast aside without hesitation.

    My feeling about this post is that I can relate to it through the rancid taste that dominates my days just now. It spoils everything and anything and this goes well beyond food and drink. Coupled with the fatigue it definitely tarnishes my life significantly.

    But.could this still become a central theme to your poems again perhaps? If you have the energy to write (and you express this lack of enthusiasm for life beautifully) here then perhaps you can hold a bit back to write prose or poems - or use your posts as prose and poem even? Throw it away if it doesn't appeal but I'm still an optimist, rank taste or no.

  • I haven't given up, I do still do stuff. I know sitting at home not exercising would be the worst possible thing I could do. I walk the dog four times a day (though not as far as before) I look after neighbours animals when they're away, I've joined a choir, I look after a disabled chap one day a week. I guess what I'm saying is that I feel as if a piece of me has been burgled!

  • Yes well it has! And perhaps forcing oneself on is the best way? But I've found it necessary to learn new ways and give up on many of my old, tried and tested pleasures now. After all we are in this for the long haul in all likelihood so it is a bereavement we are trying to process.

    I'm married to a lovely man but he has a propensity to forget why visiting an open garden or navigating an art gallery or museum might no longer be a fun experience for me. Several times I've just had to lie down somewhere to make him realise that I've changed fundamentally in what I can do now. No one in my life really "gets" that I'm missing a big chunk of myself these days. But you and I do and others here as well - so perhaps this is enough - for now anyway?

  • Good to know I,m not alone.thought it was just me.I.ve gone from a very smart clothes orientated woman to a miserable throw anything on and can,t be bothered with how I Look anymore.

    I,ve Lost so much weight just a bag of bones,not interested in food.or anything else.

    If it wasn't for my dogs I would stay in bed out of the way.feel like I,ve dug myself a pit and can,t be bothered doing anything about it. Is this the R.A. Or just me!!!!! Miserable old crone !!!!!!

    Sick of well meaning relatives I eat this .I eat that,lost my appetite not my mind.

    Havn,t the energy to care....

  • I think it's partly autoimmune. Unfortunately the exhaustion and low mood is very rarely looked at by docs. Though to be fair, I'm terrified of telling professionals how I feel in case all my physical symptoms are dismissed as neurosis! =-O

    It's kind of hard to get out of the pit once you've fallen into it Ruby. Its a vicious circle of exhaustion and can't be bothered.

    I do try to do somethings, but I end up feeling frustrated.

  • Maybe wild camping is a bit extreme? Maybe writing haikus would be more like it? The frustration of trying to keep up old pleasures is not so good - like head banging?

    Speaking just for myself I need to tantalise and tease myself out of the pit sometimes with tiny tasters - shots of something I find delicious - after dwelling in the pit for a little while until it becomes too rank and smelly? Sorry but I'm a great one for falling back on children's literature and Winnie the Pooh and the Heffalump spring to mind when I think of pits. But these days a pits also take on a Nordic noir feel so aren't great places to hang out for any length of time. I do stay near to the edge though just in case!

  • I think also the drugs can really wipe you out.

  • If you don't tell your Rheumy team how it is.....how can they help you?

    It is hard, but been there...got out from under & it's really worth it!

    AC

  • I used to love clothes but now its leggings and baggy top every day. Thing is I still keep buying clothes....just in case.

  • I just found two summer dresses in my wardrobe ..still got the sales labels on them,...but I've still got nothing to wear!

    Junk the leggings Cathy...get a pair of half way decent trousers & honestly you will feel so much better. I used to put on leggings.....then I'd think, NO. I can't be seen dead out in these. (I'm size 10 so nothing to hide)! I bought a nice soft pair of slim jersey trousers ....made me feel so much smarter........& I think it cheered me up!

    Can't hurt...,try it!

  • OK I will give it a go!

  • Atta girl! Go for It!

  • ;-)

  • Check with your Rheumy....I lost a ton of weight & was so fed up with myself it took ages before I noticed...turned out Leflunomide had stolen my appetite.

    Taken off Leflunomide..had Depo injection then finally agreed to RTX 18 months ago & so far so good!

    Get on it now Ruby!

    AC

  • On benepali.doing okay.rheumys advice see g.p. for prescription supplement drinks. g.p. Prescribed 1 drink a day because they are expensive,go back in a month for weigh in.she agrees my b.m.i. Is too low .back this week I know I havn,t put any weight on. Again it,s all down to cost.......so now I have to weigh in every 4 weeks.if and when I put weight on they will be stopped.....can you believe it...just when hoptital appts. are further apart I have to faff around with g.p.

    Sorry for the moan and thanks for the reply....

  • Well you've got the meal supplement drinks you wanted for a month Ruby, now why not try to eat something as well?

    I know a lot of prescriptions are being rationed because of cost, but I do think your GP is trying to help you by only prescribing one a day. After all you can't live only on these drinks forever can you...no matter how much they cost ? So there is no point getting used to having three a day is there? Why not think of something you like & have small portions.

    It sounds as if you don't really have much faith in your GP? Would it be possible to book an appointment with a different doctor in the practice next month? Often a fresh approach can sort things out.

    Let's hope you can manage to put on a bit of weight this month.

  • I think (possibly!) That there is a grief process that has to be born when diagnosed with something horrible. It's a life changing event...I am not the person I was. Though this is not necessarily a bad thing!

    I can't do the things I once took for granted, and this bugs the hell out if me. One goes through all sorts of transitions in life; some harder to tolerate than others.

    I suspected that other folks may feel/felt the same way. It helps knowing that...though I'm sorry others have to go through it too!

  • I lost both my parents suddenly and prematurely shortly before the onset of RA and my grandparents both died in a car crash when I was a kid. Although I've never had good health since I was a baby - I can equate the onset of the rheumatic aspects of autoimmunity with the sudden bereavements of both my parents.

    On the bad side of things - I have to come to terms with never seeing either of them again and that's very hard. On the plus side - others including - my husband, are going through agonies of watching their parents in slow decline, where I am not.

    There's always lemonade to be had out of lemons - but sometimes even the lemonade makes me grimace a lot and causes reflux and dental decay. It's a work in progress I guess

  • I've been working on the theory that if you pretend to be happy for long enough, eventually you are. This 'happy idiot' act of mine seems to be working well so far but I don't always believe me. Going out to a rock and roll night gives me a break from it all. We don't dance (I have three left feet and Himself has no sense of rhythm) but we're with the band and have good friends there. Paste on a big grin and pay for it later I say.

    J

  • Works for me too gnarli....been doing it for so long now I don't know any different!

    Acceptance may be the key?

  • Tbh I struggle with the whole acceptance thing. I'm not sure if I ever can or will. I just put on what I like to think is an oscar-winning performance of sunny good nature. Proper Pollyanna, me.

    J

  • I'm 18 years along the acceptance route & I honestly think that having stopped hoping the RA will go away I do feel less stressed.......that could end tomorrow of course!

    But for now I'm chilled...just booked my flights to the sun.....now that is acceptance 'I'll be alright on the night!'

    AC

  • I hope you have an amazing (and warm) time.

    J

  • Thank you.....so do I! There will be a major sense of humour failure if it's not hot! It's 30°c there at the moment......according to my friend's thermometer, but how accurate that is I sometimes wonder...must be warmer than here though!

  • Do you know I think you're right Gnarli. If you keep plastering that smile on and chattering aimlessly it eventually become the real you! I'm sure people think I talk too much sometimes , which is quite strange as I was never a chatterbox before.

    Being part of something is really important and getting out of the house doing anything, really matters. Not every day though as sometimes the tiredness takes over and you just can't be .........ed

  • Mostly, I'm quite good natured, and just get on with things. Sometimes, just sometimes, I get sick of the whole glass half full, and the make lemonade quotes (however well meaning!).

    I am perfectly aware that it's not productive, or sensible to fall into a pit of self pity...and stay there! Those who know me well understand it isn't in my make up to stay down for long, or inflict my misery on others.

    However, it's Ok to express ones frustration and anger from time to time. I don't feel like playing stiff upper lip, jolly hockey sticks all day every day. That's all.

  • Sorry for the make lemonade remark Nettac, although I did try to qualify it with a nasty "show-grins" acid touch. And it was just about me of course. Positivity can be nauseating I know and I admit I was attracted by the middle finger title of your post this morning - I rarely come here now so rely on post titles to make me want to read more. Thanks for yours.

  • Not your fault at all. Unfortunately about the fifth time I've heard that in two weeks. Wasn't aimed at you...more in the general direction of the wind!

  • It's basically whatever works for you. We're all different, thank goodness.

    J

  • Absolutely and thank you for talking about it. Sharing thoughts help not only you but all of us. Keep strong 💗

  • It's good to talk! :-)

  • It's hard to talk about the mental health side of autoimmune problems with doctors, they just don't have time. What could they offer anyway...more drugs on top of the stuff we have to take already?

    Discussing negative emotions is healthier. I'm sure many people suffer with depression from time to time, and anger, grief, anxiety and fear. All those emotions go hand in hand with any chronic illness.

    I often feel like I have to hide the depression and negative emotions from friends and family. I don't want to burden them. I also don't want to be seen as a whingeing old goat! I don't want the illness to be all I am to them.

    Still, those feelings and emotions must out!

  • Increasingly!!!

  • OMG you guys do me good! You've all managed to put into words exactly how I'm feeling. Rheumy suggested anti depressants but I know that's not the answer. This kind of forum is!! Thank you all so much and may the little things in life lift you up.

  • Glad this helped Winnie.

    I'm hoing to see my GP Wednesday to talk about the exhaustion an existential madness. I won't be accepting antidepressents ( I think they do more harm than good). I will ask about talking therapy though.

  • Absolutely. That's what my GP suggested & I've opted for that route. It's a long waiting list where I am but I think it'll be worth the wait. I feel it'll be beneficial to talk to someone 'outside' of family & friends and who deals with chronic conditions. I wish you all the best. Keep us posted on how you're doing.

  • Ditto Winnie. :-)

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