Difficulty coping with housework and family's needs

[ThreeColoursGreen]

My house is a tip and I am barely coping. I have limited energy and I am letting down everyone around me. I could go on, but that's about the sum of it. Just wanted to rant, really - I will probably feel better tomorrow

[Ashleyac]

You’re feelings are 100% valid I am unfortunately in the same boat. It is impossible being a woman with invisible diseases doing invisible work. You are not alone. I hope you feel better tomorrow 😊 (trust me I get it my grandmother was dying of stage 4 renal cancer and she was still walking to the other side of the apartment to pick a piece of lint off the floor haha she was the best. I’m just like her it took a long time to make all the adaptions around the house to help in anyway possible to get me through each second of each day hang in there! Nervous breakdowns help.

If I may rant, I am currently in the hospital, was admitted Sunday, and my husband is complaining about groceries. I’m lying here with a MS flare (couldn’t move hands and legs while driving had to pull over call emergency services) and possible sepsis from chronic kidney disease. It makes me want to scream beyond frustrating.

I am also ANA positive for limited cutaneous systemic sclerosis, but I also have Ehlers Danlos and they do the opposite (elasticity vs sclerosis). Everyone’s focused on the neurological stuff, but the scleroderma symptoms were so awful for years. I feel the skin/rheumatic stuff is more frequent than the neurological stuff usually, idk. Thank you for your time.

[OldTed60 in reply to Ashleyac]

Wow what a combination of conditions you have - poor you. I have similar in systemic sclerosis (type now unspecified but likely diffuse as my antibody is more associated), neuro Sjogren’s (seronegative) with EDS/ HSD. I have felt lucky on the latter as I assume it’s slowed down the skin tightening of systemic sclerosis and was told that, apart from the MSK pain, this is a good thing when I was finally fully diagnosed with both last year. But it has also considerably slowed down the diagnoses of my systemic scleroderma and I had several years untreated where things really progressed. They blamed my Sjogren’s for everything that went wrong in my gut and for pain and muscle weakness for 4 years until this antibody showed - and even then insisted I didn’t have it as my main autoimmune due to the lack of obvious skin tightening. Now it’s destroyed my entire gut and I have a stoma and live on a fortified liquid diet - Systemic Sclerosis is finally acknowledged as the main beastie. I do hope you don’t have sepsis of course but you’re in the best place and I hope you can focus all your energy on getting out of there as well as possible,

Getting back to the post - I’m so sorry you both feel inadequate as cleaner/ providers. However I hope you also both know that this thinking that you must keep home nice for your husbands and families as women is from the dark ages?

My husband is a proper domestic god and I’d clone him and give you bits to mix in your partners’ food if I could. But I wonder, from my friendship circle, if many women of my generation (I’m 61) are still perhaps preconditioned to expect husbands to be the money providers/ hunter gatherers? Mine retired early from a poorly paid job to look after me. So we live on very little although we co-run an art practice and sometimes make some funds from this - but it’s too erratic to rely on. But we are well into the 21st century and I feel it’s time to tell your partners and families that they must pull their weight on the domestic front and generally man-up - as my sons would say when they were kids - now all very much their partners’ equals on the shopping, cooking and housework front as well. Wishing you both all the very best but also hoping you will either be able to transform your loved ones into decent partners who care or compromise by finding the funds to pay someone to come in and clean and cook sometimes so that you can focus on your health and on living as full lives as you possibly can xx

Ps I never knew my grandmothers as both died too young, one of sepsis shortly prior to arrival penicillin, the other in a car crash in her early 60s. But from what I gather both were creative people. My mother was a force of nature and did everything from working and housework, but it killed her suddenly and prematurely and I think, with hindsight, she had neuro psychiatric Lupus. So I don’t have older generation of women to hold myself up against and find myself wanting. But in those days they didn’t have the choice we have now.

[ThreeColoursGreen in reply to OldTed60]

Thank you, you're an inspiration, with regard to the art practice as well as the gender dynamics. That's fantastic that your sons have grown up to be such decent partners. Also I am intrigued at the sci-fi possibilities of extracting your husband's DNA

[OldTed60 in reply to ThreeColoursGreen]

Thanks for your lovely reply - the last sentence made me chuckle - always a welcome way to start my day 😄xx

[ThreeColoursGreen in reply to Ashleyac]

Thank you so much for taking time to write such a great reply. I found it very comforting and it was very generous of you to respond when you're going through all of this. I really hope it's not sepsis and that you're getting the best treatment. Oh my goodness. Must have been incredibly scary having to pull over like that when driving. It's heartening to read that you have managed to make some adaptations at home but I'm sorry it was such a massive struggle to get there and that you're still not supported properly and that you're experiencing all these major health issues. I think you somehow read between the lines of my post - I have similar dynamics with my family members. I'm feeling sluggish with diffuse systemic sclerosis with some mild lung involvement and worrying about a large kidney cyst that showed up at an MRI scan. I've never found it easy to keep on top of my partner's and (now teenage and tweenage) children's needs but I'm struggling more now and can't explain things effectively to them or to friends. I find it hard to assert my own needs without reverting to what I call toxic femininity. I find it frustrating when people around me don't listen and don't take me seriously. I'm listening to podcasts and trying to educate myself about power dynamics and radical inclusion and action for a fairer world for everyone but then someone comes into the room and I turn off the podcast and have a whingey argument about the washing up Your grandmother sounds like mine - she also did that thing with lint on the carpet. She worked from the age of 12 and didn't ever stop even when she was staggering on her feet. She was an incredible strong woman and I wish I had cultivated a more mutually respectful relationship with her.

[Clangerscat]

Rant away you are absolutely entitled! I hate that you feel you are letting people down I’m sure they don’t feel like that. What you are is strong and brave and doing the best you can. Put yourself first for a while, get someone else to clear up. Take care🤗

[ThreeColoursGreen in reply to Clangerscat]

Thank you so much for your kind and sensible advice! I'll speak to my crew about helping with the mess today. You take care too

[positivedaybyday]

Hi,Firstly you're not letting anyone down! This disease is horrible & can change our mood day to day.

Give yourself a break & focus on what you've achieved rather than what you can't do. It does help!

I've had Acute Diffuse Systemic Sclerosis for 7 years now & I agree it can be hard at times.

As you say tomorrow you may have more energy. Let your body tell you what you can & can't do each day.

You know if you push yourself too much you'll feel worse for a few days.

You'll either get frustrated or maybe burst into tears. Both are fine as you need to let those emotions out.

Perhaps have a chat to close family members & explain how you're feeling. Maybe they can help a little.

I must admit being very independent I found it extremely difficult to ask for help. After a few times I excepted I sometimes need help, especially with hoovering & opening jars etc with my hands due to Secondary Raynaulds.

I hope tomorrow is a better day for you. We're all here to support each other through the trials of this disease. Xx

[ThreeColoursGreen in reply to positivedaybyday]

Thank you so much for your kind and wise advice x

[Choughwatcher]

Thank you for your honesty and sharing this, now I know I'm not alone!!Hope you have a good today.

[ThreeColoursGreen in reply to Choughwatcher]

I felt so much better after reading everyone's replies here, and then I had a couple of constructive conversations with friends and relatives. Thanks, and I hope you are having a good day too.

[IlovePorridge in reply to ThreeColoursGreen]

Hi, it's so interesting, and very helpful to read all the comments. I have many symptoms of scleroderma, but my consultant has diagnosed Sjorgen's Syndrome, osteoarthritis, and pulmonary fibrosis. I have several painful joints and had a shoulder replacement in April. My main concerns are the pulmonary fibrosis and terrible acid reflux. For the last few months my scalp has itched so much, that at times I've thought I would go mad. I have appointments soon with respiratory consultant and rheumatologist so I'm hoping to get a few more answers, and medication to help slow down the disease (whatever name it is eventually given!)Hope you also get the answers you seek.