Unsympathetic husband...

[LittleDaisy67]

Well, here I am again having had the same discussion with the husband about what I can and can't do etc and still he just doesn't get it. Anyone else have this ? I feel like I'm banging my head on a wall!! He says he understands yet complains when I am sitting while he jobs about. I feel so useless as it is without the added pressure of him thinking I'm just lazy....whats a girl to do? Miserable again 😪

[Braveheart1]

it’s really difficult and ill health changing the dynamic of relationships you have in your life, whether it be your romantic partner, other family members, friends and colleagues! Especially with invisible illnesses - it’s not like you are wearing a bandage/cast. I’ve experienced it too and I’m sure we all have at various points from different people we come into contact with. It used be to frustrate the hell out of me if I’m trying to clean and people are sitting down around me before I was ill I’m far more tolerant these days …. If it’s taught me anything it’s that being patient!

Apologies back to you and your husband; I’m sorry you are experiencing this, there are many ways my partner is compassionate and understanding along with doing most of the heavy lifting however when it comes to housework he also grumbles at me or makes comments and it hurts - he knows my limitations and I need to rest however it’s his way of expressing his frustration - so I always say it’s about time hr caught up for all the years I did most of the housework and roll my eyes at him! It does shut him up. That doesn’t mean it doesn’t hurt my feelings or that I don’t internalise it and beat myself up too ….

I do hope you are ok

Regards

Braveheart x

[Onceabiker]

Hay, we believe you! I think most of us suffer this to one degree or other. My wife often says “Can you just do this later” which might be mowing the lawn or hoovering the house. I batch cook so we can put things in the freezer but even doing that for an hour puts me in agony later in the day.

X

[LittleDaisy67 in reply to Onceabiker]

It's very frustrating. He says he wants to hire a cleaner but I feel that's a step too far. I can do housework, admittedly small steps at a time, in between working but it's obviously not good enough that way. I feel a little inadequate sometimes 😒

[MrsMouseSJ in reply to LittleDaisy67]

A cleaner seems a good suggestion to try, if you can afford one. There will still be smaller amounts of light housework required on a daily basis which you can see to. And hopefully it will ease things between you and your husband and you will feel happier.

[Deeb1764 in reply to LittleDaisy67]

Oh I would go with that personally let them do the big stuff and then it means saves the frustrations from hubby and you the rolling eyes. Some battles worth fighting over, getting a cleaner is not worth the battle if he is happy to pay. Even if every 2 weeks. Think of the jobs he hates having to do the ones you can do and write a list!

[Sroot in reply to LittleDaisy67]

Get the cleaner! I used to have one and it was wonderful. Can't afford one now as I've had to reduce my work hours. It just frees up your time to spend with each other, Instead of always feeling you should be keeping the house clean.

[Elaine200756 in reply to LittleDaisy67]

Hi LittleDaisy, I think that getting a cleaner is a really good idea, especially if you work. I know that some people on here have cleaners to help them cope their illness. I wish my husband would agree to my having a cleaner!

He's really good now and has taken over the shopping and cooking. But when I was first diagnosed he was the same. But I think that once he retired and was seeing more of how I was he changed and became more supportive. He doesn't do housework though, so I, like many of us, have a messy house.

Hence, my desire for a cleaner. It could be that he is thinking of helping you to cope with fibro by suggesting a cleaner. It's worth thinking about it. Take care, love Elaine xx 😘

[Smilesalot in reply to Onceabiker]

Hi sweetie 🤗🤗🤗😊,I do nothing except physio exercises a couple of times a day and doze. My carer Mr Wonderful Jon😉 does the batch cooking especially when he goes on holiday for a couple of weeks.

I'm grateful thankful and eat up😆😂🤗.

Please don't let anyone out you down when ur doing ur best!!!! It's not fair of ur Mrs. Don't be hard on yourself we love you and support you🤗🤗😍

LittleDaisy67 mentions a cleaner. My carer has too much to do so I offered to pay for a cleaner for him once a week. But I don't really want strangers in the house but if do it for him.

Explain to your wife once again we work when we have energy then then drop. Fog I'm rambling I'm so sorry completely knackered hugs 🤗Dawn

[Patdoyle]

my husband is the same and although he says he will do more to help he really does minimal. I don’t think it helps that some days I feel reasonably ok and other days I can’t do anything. It’s very frustrating. When I talk to him he always says he understands but actions speak louder than words

[LittleDaisy67 in reply to Patdoyle]

Totally agree! He says he's now an expert on fibromyalgia (as I never stop reminding him apparently), but if he sees me doing stuff, it goes out of his head about the "pacing." I feel like he thinks like a lot of people. it's in my head?! It's very frustrating, I told him it would be different if it was something he could relate to like heart disease or cancer but this, its so difficult to understand. 😒 thanks for confirming I'm not the only one x

[simonsgirlie]

Hi littleDaisy67

I have exactly the same situation as you and it’s been like it for over 20 years. My husband says he understands which annoys me more as he has no idea how much pain I’m in and is constantly on my case to do more. His family never give me a break they are constantly on at me too. Unfortunately they will never understand unless they walk a mile in your shoes. I wish I could say it gets easier with time but they either get it or they don’t. No one seems to understand how upsetting and frustrating it is for us not to be able to do the things we used to do. I tried giving my husband a copy of the spoons theory to show what a day in my shoes is like he tossed it on the chair and said he would read it later and it stayed there until I cleaned it up. Unfortunately If the medical world doesn’t understand us how can anyone else. Just keep your chin up and remember you’re not alone. This is his problem to work out not yours. Sending hugs

[Hel52]

Hi LittleDasiy 67

I totally understand what your going through it’s very unfair to be treated the way we do it’s been 8 years with my husband being after my fibromyalgia diagnosis he doesn’t get it it changes relationships we are not who we use too be we try and push too far trying do cleaning washing etc it has consequences on our health I had another diagnosis heart issues I kept it to myself it’s easier he’s in a sling for the next 7 weeks so I’ve run ragged it’s all bout him I can’t leave as I have no savings of my own if we did sell up we both end up potless I stuck he knows it and he’s loving the bulling I call the called the doctors for an appointment I was told they had none for 10 weeks I am sleeping on a recliner as he has the bed due to his shoulder surgery my hips and lower back are hurting I feel we are stuck with it 42 years together means nothing .

Big hugs Hel52

[Positiveminds5]

Aw I know how you feel, just stay strong and only do what you can. Men just don’t seem to insert the condition. It’s taken me a while to understand it but when it’s not happening to them they have no idea.

[Onceabiker in reply to Positiveminds5]

Sorry but there are many male sufferers here on this forum.

[LittleDaisy67 in reply to Onceabiker]

Sorry Onceabiker, I'm sure you have similar issues but I feel that on the whole, women are more sympathetic than men in general. Could be wrong, but in my own experience. Apologies for the almost existing remarks 🙏

[AgedCrone in reply to LittleDaisy67]

Maybe spare a thought for those who live alone & have to do everything or it doesn’t get done.?

[RandomSean84 in reply to Positiveminds5]

I second what Onceabiker said. I do understand that there are more women sufferers but I can assure you that there are also men that suffer with this too. I get a lot of jeers and snide remarks about ‘just maning up’ or ‘stop being a pansy’. It makes any sufferer feel like a big bag of sh*t to have partners and family members disparage or put you down for not pulling your weight or whatever. It hurts to not be believed when really all you want to do is be able to be normal again and get back on with living the way you used to. These things will always be a problem until enough people who are famous get it and come out about having it as that seems to be the way that most of the general public learn about things and become sensitive to it. I defo feel LitteDaisy67’s pain and wish her well

[LittleDaisy67 in reply to RandomSean84]

I wholeheartedly agree and apologise for the assumption. Its the illness not the sufferers, we just need a little understanding sometimes, and thanks for the good wishes. I must admit I feel a lot better after being on here and hearing others stories, good wishes to you too x

[Debsdelight72]

Morgan Freeman is said to also have Fibro and the lady garden too, We need more so called celebs to own up to having it?????????🤔 There might be a bit more information and awareness then ?who knows

[Lovecavatese]

hi , my family don’t understand it, tbh how can they, I couldn’t believe just how much my body is affected at once, I can recall the luxury of just having one isolated pain myself, gone are those days. Every morning I am amazed still 4.5 years since it started. My husband was awful for the first 2 years, shouting in frustration thinking I was fine really until he asked me to wear his Garmin watch. His and my readings were incredibly different! He was amazed and I was elated! Really! There it was the evidence staring him in the face. He has been much better since. He still moans, but I get it, he and I are anticipating a recovery, we are both disappointed when after 2 good days I crash. We’re both now accepting it’s not going away. That’s where we’re at. Hope this helps. My sister just thinks I am a lady of leisure, I don’t see her much tho so she will. I don’t care about that so much tho. Take care x

[kellerfly]

I am so sorry you are dealing with a partner who can not empathize with what you are dealing with. I also had a partner like that for 25 years. And. I had to leave him over 3 years ago. It was not easy. It still isn’t easy. I have to hire help to clean my house once a month. I have to ask my friends to help me with doctors appts and such. It is not easy. However. No longer living with eye rolls and the fighting and the mental load of someone constantly judging me for my health — something I have no control over? I am free. I know this is not something every person can do. But my mental health has improved. My physical health? It will likely be a life long battle.

Hang in as best as you can. Adjust what you can in your home as you can — control what you can control. Radically accept the rest.

[dJolinar]

Fibromyalgia invites invalidation from family and spouse per Ghavidel-Parsa, a researcher in Iran - supposedly not from doctors in iran, but the iceberg nature of fibromyalgia and many other peer-reviewed medical research articles out of America show that for some reason people with fibromyalgia don't get the same respect, validation, and get instead discounting, from doctors as well. Why doctors in Iran are different, do they invalidate everyone equally or do they not invalidate at all, is this merely that one particular location? I don't know. Here's the link and citation:Ghavidel-Parsa B, Bidari A, Tohidi S, Shenavar I, Kazemnezhad Leyli E, Hosseini K, Khosousi MJ. Implication of invalidation concept in fibromyalgia diagnosis. Clin Rheumatol. 2021 Jun;40(6):2369-2376. doi: 10.1007/s10067-020-05515-4. Epub 2021 Jan 7. PMID: 33411140.

pubmed.ncbi.nlm.nih.gov/334...

Below is a link to another of her articles, that you also might find validating and useful, and let you know that someone out there knows what's going on and what you're going through. Not just us, but this amazing researcher.

europepmc.org/article/med/3...

Two sides on the fibromyalgia coin: physical pain and social pain (invalidation).

Trigger warning, mention of suicide, only because it goes with a medical link proving what stress does to us.

You'll have to look at it yourself for details, but it is so worth it. Invalidation means conflicts or disagreements about legitimacy, although I like to define it as, "Those are not your symptoms," because a doctor once told me those words; I am too mentally deficient to realize that my perception of my own senses is wrong. Doctors. Sorry to use a cuss word. It causes social pain or emotional pain.

Normally people treat that as separate from physical pain, despite an awful lot of proof that otherwise, but maybe those people have subclinical fibromyalgia and get invalidation as well.

I mean, they talk about a broken heart and emotional anguish, and people seem to feel it physically as well. there's even an article about narcissists with the words the pain is in the brain in it, so it's not just us.

However, this article focuses on the fact that they are interconnected it especially in people with fibromyalgia, so when if someone tells you that what turns out on the electrocardiogram to say that you had myocardial infarct finding now present as compared to the previous day's electrocardiogram, instead, you are a healthy person, yes another quote, the pain is physical, as well as emotional.

And increases the risk of cardiac problems from stress: pubmed.ncbi.nlm.nih.gov/201...

Provider engagement reduces the risk of even suicidal ideation:

pubmed.ncbi.nlm.nih.gov/301...

. . . supposedly to zero, which is lower than the average public. However, we have an over 10 times the average suicide rate, so we aren't getting that provider engagement; the reason being described above by Ghavidel-Parsa and in the iceberg nature of fibromyalgia, because fibromyalgia seems to simply invite invalidation, to the point that her article says it is a diagnostic tool. Full body pain? Invalidation in Iran by family and spouse? Fibromyalgia first choice diagnosis.

They don't want to feel what we're feeling, perhaps.

Please also read:

Irwin JB, Baldwin AL, Stenberg VI. General theory of inflammation: patient self-administration of hydrocortisone safely achieves superior control of hydrocortisone-responding disorders by matching dosage with symptom intensity. J Inflamm Res. 2019 Jun 13;12:161-166. doi: 10.2147/JIR.S195165. Erratum in: J Inflamm Res. 2020 May 21;13:207. PMID: 31354330; PMCID: PMC6581742.

ncbi.nlm.nih.gov/pmc/articl... 👈

Average benefit over 70% in 601 fibromyalgia patients. Contact Dr Stenberg the corresponding author at the email given in the article. He's a saint - he will treat you gently.

[nonmarothonpain]

dont have a husband anymore went off the younger uglier model . years ago but i do find that everone around me does not get it they say they do but it boils down to they dont want you to become depended on them i had this said to me . and that answered my thoughts . . so i just struggle on ..