Hi There - I've been diagnosed with lupus, fibromyalgia, rheumatoid arthritis and a few more which I won't bore you with, for 15 years now.
I know the answer to bad days is to sleep but I always feel so guilty spending most of my days in bed. Then I get frustrated that I've not done, or not able to do, simple tasks like cooking dinner, household chores, or just enjoying the day with my family, etc..
Please tell me how you guys cope - I'd love some words of wisdom from others who really understand please.
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BetsieBoo
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I would also like coping tips lol i have been told i have autoimmune disease but yet to discover what type..i am in constant chronic pain and swelling in joints so much so i am limited to what i can do..even the simplest of tasks are a painful chore xx
1 I always rest and ask for help when I have arthritis or swelling of the joints (good advice I read somewhere). I also rest and ask for help when I have bad muscle weakness and exhaustion (usually lasts 2-3 days for me).
2 If I have fatigue and joint pain that isn't swollen (arthralgia) and I am 'normal-tired' but not exhausted, I will make sure I do something each day, as doing a little exercise is good for me. So on those days I will do a little and rest in between -and make sure I've cooked dinner as part of my activities.
I don't often have the energy to do cleaning or hoovering, so my husband catches up with it on the weekend if it's got bad! He'd rather do that than pay a cleaner!
It can be so frustrating to not get some of the things done that I'd like, however I think over time you get used to lowering your expectations about what is achievable and appreciating the small things!
My husband who's retired does most of the household chores. But i do try to aim at doing one or two small things every day. Sometimes i can do a bit of hoovering, if i can't i'll do a bit of dusting. Any small thing thats achievable. Don't know whether this helps.
I've been diagnosed with sle for 5 yrs n work full time as a teacher. When I'm feeling ok, I cook dinner, housework, gardening, etc. when I'm beginning to feel 'lupus tired' I tend to take it easy n let my husband do more of the household stuff. This wk I'm totally fatigued, n been off work for 4 days with total rest- this is where the guilt comes in!!
Dont think the guilt will ever go away... Just try to do things when u can.
I work 20hrs/week & am a single mum. Im having a flare up right now & riddled with guilt - dont spend enough time with my child, house is grim as Ive no energy. I pay for the school bus in a morning cos I can't function til 11ish even on a good day so I dont even shower & dress til 2.45-3pm!! (I work from home). On good days I choose time as a family over cleaning & Thursdays are 'pizza & DVD night' - pizza delivered for a night off frm cooking!
The outside world think I'm lazy - not cooking & have no pride cos the house is a mess & 95% of the time I dont care what they think & have given up explaining lupus over & over, reccomending they read Christine Miserandino (?) 'spoon theory' instead!!
I never feel guilty going back or staying in bed, because my body needs it. I was admitted to hospital once and the consultant and Rhuemy nurse told me I looked exhausted and I should rest more.
My husband always take time out to go fishing and he does not feel guilty, he encourages me to rest and not to worry if things doesn't get done. On a good day I always cook a really nice meal for my family and I might even invite friends to share our meal.
Friends know that there are times when they call I will be in bed and they have even helped when my children were younger by having them while I go back to bed. I now find time once a week to go out with or visit at lease one friend.
I am now retired and I receive DLA so I use some of the money to pay for help to do my house work and a gardener.
When I am in bed I am usually in a lot of pain but once I am up and moving about the pain goes away so I go to a toning suite for gently exercise three times a week and I choose appointments for later in the day so I can have a lie in.
Hope this helps
xx
I try not to sweat tha small stuff. i used to feel guilty about not working but i cant manage it so have learned to love myself a little biut more and know it ok to be frail and weak. our society say we have to be strong independent and do everyhing ourselves. we were made to live in community just in our society its not so eveident. and just realising its ok to ask for help. we will all need help sooner or later most people just dont realise this.
Its great to hear people not feeling guilty,I always do when I wake up,feel exhausted & have to go back to bed always feel I could be doing something more productive,keeping a tidy house makes me feel less guilty & I do it whenever I can,just wish I had enough energy to do more with my life but hey,that's lupus for you.
Even though I've had it 15 years still dont feel that I've completely accepted its limitations..it makes me feel inadequate & I tend to compare myself to other people who are so organised & together..not a healthy outlook.
I hope I can learn to love myself,any advice would be appreciated
I never book appointments two days running and always book anything very late morning or early afternoon. I find some days I have to go back to sleep again after breakfast (more days than less) and when I have put the washing in as I feel exhausted. I don't feel guilty any-more as I know this is what my body needs and could not function otherwise. I am better as a rule after 11 am. On my better days I try to cook a double meal at once to freeze one for a bad day. I try to do little bits around the house as I go, however small. I am a single parent so there is no one else I can rely on. Luckily my son is now college age so I don't have school runs. I also don't answer my phone unless I have some energy as I can feel drained after a phone call - crazy, but I know you will all understand! My frustration lies with my mother who is nearly 80 can do so much more than me! I am also fed up in a guilty way hearing my teenage son saying you are always tired - the joys of lupus!
Guys, thank you so much with your honesty. I feel better that there are more people out there who do feel the same as I do.
I'm a single mum with 2 grown up kids and a teenage girl. I just don't like putting on the kids as I feel I should be the one helping them not vice versa.
The emotional side of a long term illness never seems to get addressed - its not all quite what you see on the telly is it!
I wish you all a pain free day tomorrow and if not a long lie in without the guilt!!
Hi there BetsieBoo - I do sympathise with you, and agree wholeheartedly with your comment about the emotional side of this illness. We are conditioned to look for improvement..and with SLE it is so unpredictable! I find myself weeping - when I'm not even sad......
My husband is very logical, and always tries to look for reasons why I get so low and exhausted - there often are'nt any obvious ones.
Have you managed to obtain the excellent DVD that Lupus UK have made? Those who care about you will have the patience to look at this, and (hopefully) understand better.
I feel guilt (and sometimes envy) when I hear about folks much older than me who manage to pack so much into their lives. At least this is not like dementia/cancer - we do have a certain amount of control (or is this delusion?) of how we manage our energy output/conservation...
Have you asked your teenage daughter if she would share your time on this site sometimes?
Just a little straggler at the end ! Guilt has been a BIG issue for me ! Despite 4 admissions , so far, this year I still think I need to 'get a grip ' .
At first when I saw Lupus sites I thought 'oh no how negative ' sorry , just being honest and think I was angry at first with Dx.
NOW however , I completely eat the entire humble pie ! I realise how wonderful it is to get help and reassurance ! I realise it is fine to feel tired, to pace myself and get so many handy hints . Think I have farmer's daughter's guilt !! My dad never had time to be ill and always kept going !!! We were taught the same. I remember when I was younger and worked on the farm I kept saying I felt really ill for days until I collapsed and was rushed into hospital with pneumonia and collapsed lungs ! He kept saying I was fine ! I admire his work ethic to this day but it does still leave me with a guilt legacy lol !
I have SLE and fibromyalgia (plus a few others) I think the former combo can make you exhausted so I would say rest when you need to but do a little light exercise when you can to as it's so important and does help.
I also have this guilty complex ,I have been ill since my first child was born in 1979when she was about 2 I was taken in hospital with what they thought was a uti that wouldn't clear even after two weeks of rest and antibiotics . It turned out to be sepacemia and pancritities !!! Both my parent had arthritis so I always tried to help them as much as I could and always took my mum shopping but as I got worse this was no longer possible the guilt I felt about that was so hard to bear and I really beat myself up !!!butAs time goes on I can't even help myself !!!! I forgot to say at the begging I have sle fibromyalgia arthritis and damage to my neck and spine !!! I am having a really bad day today and have only just got on too this site . I am not too good with a computer just leaning , I feel for all people with a chronic illness and know how hard it is to cope !!!! Bless you all !!!!!! Xxx
Hi there Olibop.....stay with us, and have a moan when you need to!
Like you, I have SLE, Fibromyalgia, Spondylosis of the spine, with injury damage to 4th & 5th vertebra in my neck, causing sciatic pain down left arm and leg !!! Sleep (when it comes) is a blissful relief - but waking takes courage, because the pain is so overwhelming some days....
I hope you see your computer as a friend - and perhaps manage to go to a drop-in class (no set time) so that you know your way about the Internet without getting too frustrated (!) It can be such a useful tool...I do most of my shopping online now, because I find shopping SO exhausting.....
Do you see a Consultant on a regular basis? It may be that you need a review to see if a change of meds will improve things for you. There are some new treatments available now, so may be worth a try.....
I'm lucky in having a partner who takes me out when I feel "cooped up" - even if just for an hour or so. He also makes me laugh - which is the best medicine.....
I space out my appointments over the week and never more than one a day. by appointments, i'm including doing the shopping or meeting a friend -- anything that takes me out of the house.
also i feel no guilt in taking a nap. i always set the alarm though or else i'd prob sleep through till the night and that wouldn't help overall.
On a moderately bad day, when i can do something but not leave the house, then i'll stick a load of laundry in the washer. that makes me feel like i've accomplished something and hey who doesn't like the smell of clean clothes?! but then again, i like doing laundry (!!). hoovering can always wait so not much guilt there.
Jsue I really love your attitude with the last comment.
Again thanks to everyone who has replied.
I have bad days when the lupus takes over and I just have to let it but i dont find that easy at all, i'm always beating myself up over it. I only work one day a week so I aim to be well on that day. Doesn't always work though! It's a case of no work, no money so not always got a choice.
I just dunno if it's my nature or the way I view life but something makes me feel so guilty and shouts out lazy. Guess its time I tried to be a bit kinder to me?!
the huge change this illness brings is like a shock to our whole world, not just physically. especially if we were brought up to be givers (and i haven't met many yet who don't fall into this category).
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