Chronic fatigue syndrome/ME

[MusicMum18]

Hi
Just wondering if anyone knows anything about this? I've looked on the net and there seems to be opinions about whether it is a condition or not. My mother in law claims to have it.
She hasn't worked for about 40 years, often cancels attending family dos saying she's too ill. She never leaves the house and spends her time sitting in, staying in her dressing gown all day, smoking and drinking.
I have suggested she might feel better after going for a walk, but she just says it won't help. She doesn't do the grocery shop, and I feel sorry for my father in law who still can't retire, does all the shopping etc.
last time I saw her she seemed very forgetful and asked me the same questions over and over again. I didn't trust her to hold my lo.
I wasn't sure if she was drunk, or if it was to do with her illness.
I'm not sure if she's using this illness as an excuse to be lazy? I have always found her to be very conscious of keeping up appearances of being a close family but my poor dh has been upset by her lack of contact, and of the fact that she doesn't seem to take care of herself. She recently hurt her ankle and didn't bother seeing the doc. She couldn't be bothered.
I find it all very strange.
Surely if she has ME it can be managed through medical care?
I'm just curious as I've always found her very strange...

just so you know OP the highlighted parts of your post are what made me angry. And my DD has very severe CFS/ME with 0% functionality ie cannot eveneat or sit up or clean her teeth, she also has POTs and EDS (hypermobility) - and we have been told and research into other countries' diagnostic criteria back this up that POTS and EDS are symptoms of CFS not the other way round

Hi
Just wondering if anyone knows anything about this? I've looked on the net and there seems to be opinions about whether it is a condition or not. My mother in law claims to have it.
She hasn't worked for about 40 years, often cancels attending family dos saying she's too ill. She never leaves the house and spends her time sitting in, staying in her dressing gown all day, smoking and drinking.
I have suggested she might feel better after going for a walk, but she just says it won't help. She doesn't do the grocery shop, and I feel sorry for my father in law who still can't retire, does all the shopping etc.
last time I saw her she seemed very forgetful and asked me the same questions over and over again. I didn't trust her to hold my lo.
I wasn't sure if she was drunk, or if it was to do with her illness.
I'm not sure if she's using this illness as an excuse to be lazy? I have always found her to be very conscious of keeping up appearances of being a close family but my poor dh has been upset by her lack of contact, and of the fact that she doesn't seem to take care of herself. She recently hurt her ankle and didn't bother seeing the doc. She couldn't be bothered.
I find it all very strange.
Surely if she has ME it can be managed through medical care?
I'm just curious as I've always found her very strange...

people with CFS spend years having 'helpful' suggestions made to them like 'get some exercise, you'll feel better', 'surely you can't be so ill you can't even visit granny',
my dd hasn't changed her pjs for 3 weeks because she can't gather the energy to lift her arms up so I can do it for her. If she sits up she faints. Sometimes she can't open her mouth enough for me to clean her teeth.

people never ever doubt the diagnosis if you say you have cancer - why do people feel they can doubt when its an illness that gets so little research? i hope your MIL is getting sufficient support from her GP and community team, CCG and hospital specialists. there is no treatment only help to manage the symptoms

In response, again. Let's talk about each one separately.
Highlighted bit 1
There are opinions on the net about whether it is a condition or not.

If you search online about me there are different opinions about me. I didn't say what my opinion was in the sentence.

So why angry about that? Maybe you are angry at the people who are putting these opinions on the net, rather than at me for simply pointing it out?

To find those "arguments" did you by any chance Google "is ME a real illness?" Or read the comments under a DM article?

Personally I will take the NICE guidance as a pretty good source.

You are not going to convince me that you weren't rude and as you've pointed out, you don't care what I think anyway. So what point are you trying to make? You've upset people and you're still at it.

You've been given good links to read and I'm sure under it all you do care about your MiL so read those and stop arguing with people on MN.

Highlighted bit 2. Use of the word 'claim'

As rockin clearly understood it to mean "Claims to have it, doesn't mean that she does have it - it doesn't mean that she's making it up either, sadly for many of us it can be a lazy arsed doctor misdiagnosis, or "waste basket diagnosis" . Don't understand how 'claims' makes you angry. Just another word for 'says'.

Please don't say I'm implying anything. My mil claims to have me, yesterday I 'claimed' to know little if anything about hence, hence trying to learn about it.

for the record, "says" would be rude too.

As in: "I saw Sarah in town she says she has cancer". People will look at you a bit

Anyway I don't know why you're bothering. You don't think you've done anything wrong and you've got the answers you wanted.

Says would be rude but claims is a whole lot worse as like it or not it suggests disbelief on the part of the person relaying the message.

I think you've probably just come across badly and didn't mean to be rude. I hope you found the links useful and can support your MiL.

Still don't get it. Sara says she has cancer. She has it and I understand what it is. I fnd out meow from doctors and help Sara.

My mil says she has me, I don't know what it is and she has diagnosed herself and has no medical diagnosis. I therefore want to find out more so I can help and support. She might not even have me as people have suggested on this thread!

If I said or claimed a reason for being ill that my famy didn't know anything about I'd like to think people would try to find out about it rather than say things like 'non sufferers don't understand".

I've just been reading about me but I'm stopping now. For information fast day I typed in "what is me?" Into google. Who's judging who?

In fact, thanks to those who have offered help but I'm going to stop finding out about this now and I won't be making suggestions to my mil to help her. I'm obviously not part of the 'club' and am being criticised for trying to find out what is the matter with my mil. I feel very hurt and bewildered I don't know what the matter is whether it is me or something else.

I'll just fuel the fire for people to look at me and say"there's someone else who doesn't understand me". Like so many other people who are ignorant about me.

So sorry for trying to learn about this condition I'll just leave it now for those in the club.

Why should I bother trying to understand if I'm being attacked about my questions. The questions in my original post ALL refer to my mil and not to me sufferers.

I'll just leave her to suffer then shall I? I can't do anything about it after all. I just won't mention it for fear of saying the wrong thing and I don't now feel I can talk to her about poss options and solutions in case she throws back the "nobody will ever understand" thing like some of you have done!!!!!

That all sounds like a great way of helping non me sufferers understand what I believe is a terrible condition, not that anyone will hear that so I'll say it again....I believe me is a terrible condition. There. Happy??? Sorry I won't be able to ever understand this I'm not going to bother trying anymore. Thanks again to those of you who made suggestions.

Were going round in circles, I am aware that it is a condition, yes, saying it again! My friend at school had it. I'll just say for the zillion th time....I'm not sure if my mil has me or not!!!!! None of you can tell me she has me because you don't know. The assumptions you all make about my mil and me are ridiculous. Some people do use me as an excuse!!! Fact!!!! It's horrible that they do but they do, and I hate that they do.

In my opinion education and learning are what helps people understand, not being shouted down of pernickety things that are relating to an individual person, and NOT all sufferers!!!!!!!!

Really not sure I can be any clearer. I am not attacking anyone. Therefore stop attacking me please.

she says she has it so why dont you take it at face value? and you dont say you are trying to help her you sound like you are trying to disprove your lazy good for nothing MIL

What by trying to find out more about what she has? Sorry but I have some intelligence and don't just accept unquestioningly what people tell me. The way human beings learn and develop is through questioning, that's how people find cures for illnesses. People at cancer research, should they just take things at face value? Or should they look at what people have, symptoms etc if they don't understand what is wrong with them?

Some people have posted that there might be some other issue my mil has wrong with her health. Maybe you shouldn't just assume that she has me?

Some people don't actually even know what is wrong with them, the other day I 'claimed' to have a runny nose. In fact I had a cold. So I was wrong! Maybe my mil is wrong in her self diagnosis. Maybe she is right!!! I don't know, as it am not a doctor. I'm not assuming either way, just trying to find out.

What's the point of research if people just accept things at face value?

Like I said I'm not bothered about what me is any more, as people have told me it's none of my business as I'm not in the club. I understand that pete with me suffer a great deal and there is nothing that can be done to cure this condition. But at least have the decency to credit non sufferers that they may just be able to understand if they are given a chance to. You're not giving me a chance to understand.

So there you go, call me what you will, but it's due to comments by people that are judging my motives and asusumung that I am a nasty piece of work. Which I am not.

For the record, I am a carer and a volunteer helping less fortunate people, and only wanted to help my mil. But I feel like what's the point in caring for people when they are so ungrateful towards someone who is only trying to understand something to provide appropriate help and support.

In my view, sufferers of me need to be listening to, and I have listened to people's opinions, which is why, because of people's suggestions I am questioning what my mil has. Surely the support she needs should be linked to the condition she has, whether it be me or something else. Therefore, surely if she eliminates other possibilities, we will then know it's me!!

Some people have posted that there might be some other issue my mil has wrong with her

Perhaps she has taken against you [can't for the life of me why she should of because you are so lovely and thoughtful] and is 'saying' just anything to keep you out of her life.

good point Katharine! OP if MiL claims to have bubonic plague then I'd be suspicious!

OP, I'm another person saying your OP comes across as judgy and ignorant. If so many different people are saying this, maybe you should listen and perhaps take it on board?

Your subsequent posts also come across as back tracking, defensive and just plain rude, quite frankly. You have managed to upset quite a few people who have shared personal experiences.

I hope you take this on board and take your goady fuckery elsewhere if you can't

Also, you keep saying that you just want to help your MIL. So why don't you just ask her?

Yes, there are a variety of opinions on the Internet. But there are also a variety of opinions as to whether Neil Armstrong really walked on the moon. Do you give those credence? I would suggest your critical analysis skills could do with more development.

Katherine Clifton, stop with the personal attack. I'm not attacking you personally. Who are you to comment on my relationship with my mil?? It's actually none of your business but I love her very much. Personal attacks on me, why? I'm not commenting on your personal life.

For the record all the family are trying to help and we are currently all trying to find out about me. We have asked my MIL what we can do, and all she says is that she doesn't need any help, however she has said that she would like to get better. So we are trying to help.
Purple thread, if you read the other posts you will see that a lot of people have in fact been very helpful and have suggested that there might be something other than me that my mil is struggling with.

Some people seem to be taking my questions and queries as a personal attack on them.

I am NOT saying that me sufferers are lazy liars. I have never said this AS I DO NOT THINK IT.

Of course I do not believe everything I read on the internet.

Nor do I believe everything people say on MUmsnet, and that includes the little club of people that seem to think I am attacking all me sufferers.

I am extremely offended that you think that of me. You don't me at all and I don't know you, thank goodness. I wouldn't ever want to. Judgemental of all non me sufferers who don't understand the condition.

It would be wonderful to resolve this issue but I can't see it happening, clearly nothing I say is right, even though I have tried to explain my good intentions but no one believes me, so there's not a lot more I can say.

I have not attacked anyone personally, and object to the fact that so many of the comments a minority of people are responding with are personal towards me. That is bullying and it is victimisation. I believe you can report that on mumsnet and indeed the police. I feel as if I'm being bullied for my opinions, and I'm not sure why as there's nothing wrong with them.

I am now seriously asking you to leave me alone now. Like I said I am not going to bother finding or asking about me now, because I am sick of being condemned for it.

Please leave me alone. I am sick of there personal remarks. I am not judging any individuals. Some of my family members are Ill too with other conditions, it is an upsetting time for me at the moment and I'm not interested in anyone else's comments anymore. I was just trying to help my mil. So stop making the snide comments. Whoever because I'm not reading or listening to them any more.

Sticks2 how do you know my mil is desperate to lead a normal life? You don't know her!!!
......................
Read my post properly. I was talking about my friend's daughter. SHE would do anything for a normal life.

You just take care of your mil and as I said, educate yourself.

CFS is living hell for sufferers (and their loved ones)

You said 'is she just using this illness as an excuse to be lazy'. That is JUDGEMENTAL sweetheart. That is why we are being mean and horrid to you. Now you've rocked the pram bugger off

Overthemill I am not judging her I am just wondering if she is using it as an excuse. I am also wondering if she has something more serious. I don't know for goodness sake!!!!

Do people pull sickies and skive off work saying they are ill? Yes they do. It happens. Now I'm not saying my mil is using it as an excuse I don't know!!!!!!!! Those with me are not lazy I know that, but you don't know my mil so how can you assume she's not using it as an excuse.

If she told me now that she has been using it as an excuse all these years because she didn't want to work, would I get an apology?? Just wondering as my dh just told me now that his dad said she told him she hates the thought of working because she'd rather stop at home. She said she's worried that she wouldn't be allowed to smoke in the work place and she said she can't work as she can't drive. My fil also said that he sees her every day and she is very mobile round the house and he thinks she would be able to get out more if she chose to.

Like I've said you don't know the whole situation. I don't know what the issue is, and Neither do you so stop just assuming she has me. She might not have.

By the way I shouldn't have to explain the whole situation there's a lot more I could say about what my mil had been saying to family members. But I'm not because it's private. Maybe you should just believe me when I say she could be using it as an excuse. If it is, she won't be doing it out of spite, there might be an underlying psychological issue.

Now leave me alone.

Stop posting and we'll stop replying!

What a childish thing to say.

Not at all! You are wondering why people keep having a go but it's because you keep coming back and saying more and more! You won't make people change their minds so if replies are upsetting you it might make sense to stop posting.

Now leave me alone

It would be more effective to stop posting than to keep posting but tell people to leave you alone?

Musicmum18 I believe your ( perhaps inadvertently cynical) tone in your op upset those of us who suffer from conditions in this field.

Unfortunately, your further responses have been peppered with many exclamation marks which can come across as aggressive. As can phrases written in capital letters.... It all starts to feel inflammatory. Posters are then offended and react accordingly. Thus the conversation has spiralled downwards with sufferers sometimes feeling as though their condition is made little of....whether this is the case or not.

Sufferers would know how your MIL is feeling, if she does indeed have ME, and would be defensive on her behalf.

There is no doubt that your op came across as cynical and you are now trying to back track.

An old saying..... when you're in a hole, stop digging.

If you got it wrong with the tone in your original post and did not mean to appear cynical, just say so.
Much gets lost in the written word.

I hope your MIL and your family are able to work through this.
for your MIL

Funny how other sufferers didn't take offence. Maybe they didn't just assume she had me straight off and jump to her defence. Maybe those people should consider that the situation might not be as straightforward as they think . They don't know the big picture.

Don't pretend to care about my mil or indeed the family, you have no idea about what she is suffering from and how I have seem other family members suffer over the years.

I understand people might not like exc marks and caps but I am upset and would rather use those than swear like a rough dog.

You are right about me keeping posting perhaps I have a stupid hope someone our there will understand. Oh well. Keep trying for that last word.