Having a bad day my friends. Feel alone and just plain tired. Getting mean to my family because I cannot be the mother they all want me to be anymore. Making breakfast, lunch and dinner. Just cant do it anymore.....unmotivated...want to move to the country. Cant! 3 more years of high school for my girls. Dont know if i can stand 3 more years in crowded, busy noisy suburbia. I want to go now...always sacrificing for others. Tired of it all.

12 Replies

  • Hi Natura,

    Social expectations are harsh on people with a chronic disease. I cannot relate to you on the role of mother but certainly can on the role of employee, wife, friend and daughter.

    I feel your fatigue and know how are bodies can react to loud noises and busy places.

    I will now get a bit practical with assumptions and presumptions. If I'm totally wrong let me know.

    I don't know how old your daughters are but because they are in high school I presume they are between 12-18 y/o. I feel sorry that they don't understand how superwoman you are and that even superwomen need to get rest or doing it more slowly now and then. I say this because I presume you do everything at home as preparing all meals.

    Children of those ages can prepare their breakfast and lunch and can help you with dinner. Because many children, especially teens, are preoccupied with themselves someone should tell them that they need to help you. Maybe you take them next time to your rheumy appointment and than they will listen to the doctor (still an authority for young ones ;-).

    Is their a Mister Natura? He could do lot of tasks and bring the girls to school (I assume you take/pickup them to school). If there is no Mister Natura is their a good neighbour or friend who can take/pickup the girls to school?

    Please know every Lupie and everyone with a chronic disease is a superman/superwoman. It is not your fault this happened to you. You fight it everyday but you need to recharge now and then.

    Please know you are not a bad mom if you cannot do some parenting tasks. What makes a good mother is caring and listening to their children, always. To take care and listen to them doesn't take a healthy mom although it makes it easier ;-).

    Wish you strength and hopefully good times will come soon.


  • Hi Natura

    I'm sorry to hear how you are feeling but I totally understand - I have been there myself. Is there anyone you can talk to about how you are feeling? A partner or friend? Being chronically ill is such a hard thing to live with and it wears us down. I have found support from my GP and by talking to my partner, friend and a counsellor too. I also find that I need to take low dose drugs to keep my mood stable, and I am now in a much better place in myself. I resisted taking them for such a long time, preferring natural remedies, but the LDN in the morning (just 0.5mg) and the Nortriptyline in the evenings (just 10mg) is enough to keep me in a good place. I feel much happier and I am coping better. I know this might not be the path you would chose but please have faith that you WILL find the things that help you. You will get through this.


  • Am so glad you posted telling us how you're feeling natura...these beautiful replies from Patricia & dryad are so deeply thoughful...I hope they're helping you...

    these pressures of family life are extra extra tough to bear alongside chronic health issues...I know this well, even though I haven't even been able to have children...lately i've been thinking a lot about my mother & how much she gave to us all those years, especially when we were struggling with our teenage problems and she was feeling severely worn out & generally not well, both emotionally & physically...I think you mothers are wonderful...and I now v much wish I'd been able to understand & help my mother more than I could when I was a teen...maybe if a respected outsider had helped us to talk these things over, we could've helped & supported each other more during that difficult time. So Patricia's suggestions are ringing a bell in me...

    as are dryad's suggestions: I benefitted a lot from prescription mood stablilizers during one of the vvv hardest passages in my life...

    You've been through so much, and shared a lot of that with us over the years...I sense you really do have what it takes to find your way through this too ...and we're here for you as you feel your way forward...I'm so glad you're here

    🍀🍀🍀🍀 coco

  • I totally get what you are feeling Natura. Unlike many others you are having to do it all the natural way. When our bodies are up against themselves and we have no medical ammunition to throw at the autoimmune process it can feel impossible. Add into the mix cynical doctors, adolescent children, partners who can't entirely relate and there will be very low days. I have them too. It's important to get your children to pull their weight of course but sometimes it all needs spelling out for the sake of our sanity. They can't help if they don't know. Twitchy x

  • Sorry you are in THAT place right now.

    Totally understand your mood .Struggling with the chronic fatigue side of these illnesses seems to be the most never-ending mountain climb even more so with the expectations others and yes we put on ourselves.

    I still have "streuth I'm rubbish" days but only occasionally now.Ive also gone through the guilt thing ,despite rationally knowing full well its not my fault, due to my kids having been born with disabling conditions.

    I have replied to others before of the need to get family ,especially kids,to listen,understand and yep muck in and help not only for our / your quality of life but for their futures as well.If we bring kids up to or let others expect us to be superheroes not needing help it is teaching them that that is ok ,right and prooer which is no good for any of them .What happens if they struggle physicallly,mentally or emotionally in their lives if we've taught them toughing it out and not asking /receiving help is expected.They need to understand life isn't perfect and we will all need help at some point whether a shoulder to cry on ,rebudgeting if in debt or cleaning and cooking.

    The world is full of " perfect "examples of houses,lives ,partners,kids and holidays but in my many years of meeting , helping and listening to others I've never really met the so called perfect everything and quite frankly think it would be pretty darn boring to live like that.

    Stop knocking yourself for being less able and be kinder to yourself and family .This is life now and that is actually ok.You can spend quality time talking your kids through daily tasks which is in fact teaching them how to cope with household stuff.We have a lot of fun even when things don't go according to plan lkke preparing the whole meal and forgetting to turn oven on but that's ok .Being tired and in pain is no fun but being around family learning stuff together can be fun as well as distraction.

    Take care of you and enjoy those around you xx

  • Sending you hope, love hugs and many hands of help 👋👋👋.

    I am so so sorry you are experiencing such exhaustion, tiredness and helplessness at your current situation.

    Dealing with day to day life, as well as an illness that it relentless in its persuit of making ones life hell, is like swimming in treacle whilst being asked to juggle 15 balls............

    It cannot be tackled without support from those around you, both professional and family and yet asking for that help can feel like failure to cope.

    This all results in the darkness that engulfs you and seems to have no end.

    Here you will always find love, support, advise and many, many words of encouragement to help you through each minute of each day, until you have the strength to soar once more.

    May your troubles be less and your blessings be more with nothing but happiness flowing through your door.

    Huge hugs from across the water



  • Hi Natura,

    Can't really add much more to all the great replies you have had.

    Trouble is when I can't cope any more I tend to blame myself which is crazy but I guess we all do.

    Remember you are a hero, always!!

    You have had to suffer this awful disease yet you have kept going and brought up your family the best you can, despite it all. Maybe on your bad days just go to bed and let the girls see you can't go on.

    Teenagers are essentially very selfish, I was myself, they have have little life experience and don't realise when their Mum is just done and needs help. Maybe actually going to bed and asking them to help and telling them how tough it is might make them wake up to your needs too.

    Do ask your doctor for a little help to get you through, could make a big difference. And be kind to yourself , you have helped so many on here with your wise advice , you are the one needing a hug now. Xx

  • Feel for you, Natura, if I didn't live by the sea, I know I would die. Meals for the family are a problem for me, too, as I need to eat when hungry and of certain foods only.

    Is there a park nearby? Can you do things of a holistic nature with like minded people between your family duties and fatigue bouts. We all need to be motivated - do you have a garden. I nip in and out my garden several times a day and pull a few weeds, water some plants or just sit and read. I couldn't do without my garden and we need to be outside some of the time for our vit. D levels, though I cover up to avoid burning or avoid very hot sunny times of the day - I'm often out at full moon and I talk to the moon - no I'm not mad, but I don't feel so alone at this time. I hope you can find some way of helping yourself.

  • I know how you feel. With lupus we look ok on the outside, but hurting bad on the inside. Most people think you should keep going because we look ok and that is not the case.

    I hope you get to feeling better. We will support you in our thoughts and prayers!


    "The Barefoot Gardener"

  • I'm sorry to read your post and hear how you are feeling at the moment. You are a much loved and respected member of this on line family. You've had some great replies and I'm not going to add much more. Just to say, I have 3 children, aged 8, 11 and 12. So probably a bit younger than your girls. But I do know how children can be totally selfish and self absorbed. But I make mine do jobs. They get their own breakfast before school - unless it's the weekend and I'm doing something special. One does his own packed lunch. The others school dinners. They lay the table and clear their plates away etc. If necessary I ask them to help out in the kitchen. You must tell them how you are feeling. From my experience of marriage and family life, you mustn't keep these feelings to yourself. They will fester and get worse. Maybe resulting in a big argument - which won't help your health either. Share. Sending you a big, but gentle hug. Please keep us posted, otherwise we will worry about how you are doing. Take care of yourself.

  • Thank you for all the kind and loving support. You have all helped me more than you know. I am feeling better today. Saw the band The Cure last night with my daughters and my cousin. It lifted my spirits to a time when i was much younger, healthier and able to dance all daughters are both sensitive, and partially in the spectrum. They do help with chores, but only when i ask. They dont take a chore on everyday. My husband is wonderful. Although he doesnt fully understand lupus, he sees how worn out I am, and helps. But he has a very rough job (carpenter for 30 yrs) and he is tired too. I am trying to communicate better the days i just cant make dinner. I dont know why i am unable to get up and do it. Almost like my brain just wont work my body. Thank you all again!

  • Hi Natura,

    What lovely replies from everyone :) There are definitely days when I can't face cooking. The brain fog makes it feel like I can't think through the steps of how to prepare something and those days are a pizza in the oven days or take-away because we deserve to give ourselves a break on those days. I buy easy snacks for the kids too like cereal bars and sausage rolls so there's always something for them to grab if i'm not up to it. Don't beat yourself up over it and compare yourself to people who are healthy. As parents, we are always putting other people first buy it's ok to put yourself first when you can. My logic being that I am better parent emotionally when I am not completely exhausted and that's what kids need.

    Friars xx

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