I'm shattered this weekend and to top it off after a day of wahsing and getting school uniforms ready my husband decided to tell me cheer up as I look miserable!
Well I am! I'm shattered and miserable.
Cant catch my energy at the moment, its gone. In work today and thought I'd have a rant at my new understanding friends.
Shattered and miserable.. I know the feeling! But chin up, tomorrows another day 
Know exacly how you feel - that is why this site is sooooooo great ! Nobody in the non lupus world understands how we feel. I say when i am so tired i could just lay down (anywhere) and go to sleep !!! Take care and i hope you feel better tomorrow
Rant away!! I'm with you this all the way, it's my poor kids that get the 'mummys tired' thing again and again. I actually took my kids to my last appt in desperation to show how their lives are being affected, they're 5 and 6. I hate not having the energy to interact with them, that gets me down. To be honest I think the lupus contributed to my divorce! At least you got the ironing done, one thing achieved for the day. I try to explain to people that it's like getting through the day with a sack of coal on your back, no one really understands unless they're suffers too. Loving this site though. Loving my new meds for now as well as I actually did some gardening this weekend,, first time in a year. Don't feel guilty about just sitting down and switching off, it's hard being a mum even without an illness. I'm thinking of getting a t-shirt printed saying 'mummy's tired!!!' so I don't have to explain on a bad day.
Stuff the house work!
Alison x
i have just read this and thought it could have been written by me !!! my life is just the same - love the tshirt idea
Omg someone lik ME!!!! My babies are 9 an 5...i've been a single mum most thier lives ...but had this lupus for jus over 2 years but was only told what is was last june when i ended up in hospital....How do you get more enrgy please xxx
Love the t shirt idea may invest in on myself! Yes its true about our children. I am at the moment trying to teach my 6 year old about my condition so that she understands my poorly days, poor love.
I like the t shirt idea but mine would say Don't talk to me and put the knives away, but I must say that my kids have left home so the t shirt is for my husband, poor man has to put up with a lot.
i live alone so have no one to argue with sometimes this is an advantage but sometimes its very hard doing it alone.
You need to get a greyhound to keep you company! My life has completely changed now I HAVE to take him out twice a day - then we spend a lot of time sleeping as they're terribly lazy!
Good idea, I recently got 2 dogs which I have to take out for walks. It's a great achievement and they're great company when the kids are away.
Lupus goes waaaaay past being tired!!!!!! And your right nobody else understands!! And if one more person says "Well you don't look that bad" I might just poke their eye out!
My kids are teenagers now and after 10 years are so used to me being tired, I am normally in bed by 7.30 but they come and sit with me and even their mates come in the bedroom for a chat!!
Rest for 10 - 15 mins between doing jobs, even simple things like washing up, and just keep plodding on!
x
My wife and I were regularly having arguments because I say I'll do things and then either forget, or I'm too tired or I don't hear her...
We talked about it recently and it's not really me she's angry at, but the situation we are BOTH in. She has stuck by me through some hellish times and I'd love to say that those hellish times are over and done with but who knows what Lupus might throw our way in the future yet to come.
After our chat she has managed to catch herself mid-statement, take a deep breath and then reword what she was going to say. It makes me feel slightly less guilty but I do still get frustrated at my limitations.
I think with Lupus we are always going to feel frustrated at our limitations. I see friends of the same age, doing the housework, going out for the day, making dinner then goin out in the evening. I couldnt even do one of those things in the day! There are times it really gets to me, but you just have to pick yourself up and get on with it! Only other Lupus sufferers can totally understand what you are going through. Even after 10yrs of being with my husband, I still have to explain exactly how I feel. He is very good and does as much as he can to help aswell as work full time, which makes me feel guilty. 
its just so nice to hear how other people are feeling i love this site, dont comment on here very often but always read all your comments. Its nice to know how you're all feeling and yes am always tired to, along with all the other aches and pains that come with Lupus. If i had a pound for everytime someone said you look well today i would be a millionaire over and over again. Even at home they don't really understand and i've had Lupus for 12 years now.
Oh I am so with you get called a miserable cow - one good thing of the compliant against the hospital my husband got to see my notes and he saw what the consultant wrote. It is so hard when you are tired and in pain. I dont always want to say that I am having a shit day.
Wow what an exchange I started, its great to know Im not going mad and other people get so tired too.
Thanks for all your comments.
Its hard to explain how tired I am, exhausted really.my husband is very good but as I've only recently been diagnosed people find it hard to understand.I've sent my family a link to a Lupus info site so I don't have to keep explaining.that seems to have helped them understand.my dr told me to have 2 days off,which I hate,as I've been exhausted and aneamic for 3 weeks now.I know I'm sharp with my husband sometimes and find myself apologising to him all the time.trouble is you do look well and it's only because I look like a ghost at the moment and people keep telling me I'm not myself that I took the two days off.it's taken me ages to accept I have limitations and had to stop myself today from cleaning the house!good days and bad days but keep smiling
You do have to keep smiling yes. Im off tomorrow so Im having a bed day!! the cleaning can wait. x
I have only just found this website and am so glad i have. I was diagnosed with SLE and Raynauds 5 years ago and have been taking a cocktail of drugs ever since. Today I am feeling sorry for myself.....just fed up that a day dont go by without thinking about LUPUS and how its a complete pain in my life!! feeling really grumpy, and quite lonely although surrounded by people!! No one seems to understand how I feel...close(so called) friends just seem to get the "hump" with me when i am unwell and dont bother even talking to me! its like they blame me for not being able to do socialble things with them. Does anyone else get that? If you look fine its as though they dont quite believe you are ill...so upsetting. Thanks for listening x
As I read all the responses to your plea for help & understanding - I see my life raising my 2 children and my husband traveled all the time.
It was up to me to get them to school & out the door, homework, outside activities (except Soccer - in the 🌞 SUN- not for me), cooking, cleaning & my part-time job (which I loved & a great diversion for me)
But at 9pm - I was DONE -
If I put in “REST TIME” each day as Sara Gorman indicated in her book, I would have energy to take kids to their after-school activities, cook & do homework; otherwise, it was like dragging a “dead” body to the finish line to get to the end of each day.
I learned to have a “Back-Up” Person that I could call to help with my commitments at school or work for days when I was HIT with a Major FLARE. That helped ease my mind a lot just knowing that someone could FILL-In for me. The Pressure was lowered just having a “Safety Net” so I would not let other people down.
I learned to SAY “No” and not overcommit myself to “family gatherings”, school volunteering, work, etc. I had to set boundaries for myself to live With LUPUS AND raise children.
I learned to tell my Children what times of the night I was available to help, because by 9:00pm my MIND was DEAD😳
I learned to Ask for Help from my Kids & husband when I was slipping into a FLARE.
One Christmas I was in a major Flare and the kids at 8 & 10 years old Put up the CHRISTMAS 🎄 by themselves to surprise ME!!! What a blessing- even though it was not like I would have done it, they WERE SO “Proud” and I was too!!!
I learned to give them more chores -it made them feel like they were contributing and more responsible. It greatly helped me. And once again, my Son at 10 cleaned the Den but “rearranged all the furniture” too!🥴😆 Once again - it was done and CLEANED- so I was happy 😊
I learned I couldn’t go out every time I was invited or be ‘counted on’ to attend all engagements that I had committed to - and if that day I was struggling, my friends had to understand my limitations💜 We learn who our Real Friends are!
I learned that my Perfectionist WAYS were part of my problem- ONCE I learned to just “let go” and just let things get done, I had less STRESS and less Lupus flares.
It is ONE Day at a time, and I learned to LISTEN to my BODY when it was “SHOUTING at ME” to REST😴😴😴 I RESTED; otherwise, I would go down even harder with a Major Flare. And that’s not good for my family..... or Me💜😬😫💜😊
Have had my covid vaccine and all ok so far..
Critical illness cover
My husband just doesnt support me - so I'm getting a divorce
I'm not so smart :(
ALERT on medical records so we get the correct care if admitted via A&E - please ask for this!
