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...

Me/cfs cant really be cured or managed. People will often try hard to be ok for something and have to cancel due to exhaustion. Imagine how you feel after flu or being really ill, thesort of exhaustion that makes going upstairs hard. That comes in waves, so sometimes can do a little more.

When i am struggling no a short walk wouldnt help at all. In fatc it wouldnt even be possible as i would need tobe lying down, andmprobably thinking of all the things im mossing out on and life id rather be living/seeing/doing.

Its such a horrible condition. I feel i live a half-life at times.

2 members of my family have this, unfortunately it is extremely hard to diagnose there is no simple test and not nearly enough research into it. But in general no, it cannot be managed through medical card and really the only thing that can make sufferers feel at all better is rest. One of my family members really suffered with lack of support and diagnosis (ME wasn't as well known then, 15-20 years ago) and became suicidal out of desperation. the best thing you can do is listen to and support her - if she does have ME/CFS then she will really need the support - my other family member that has it requires a full time carer. See if a doctor can do a home visit.

*medical care, not card

I had chronic fatigue very bardly a few years ago and couldn't get out of bed having been hugely active and under 30... I was gradually able to recover however am very fortunate and it took a very long time. She may be using alcohol to deal with the frustrations at her limitations I know I got very depressed.

It sounds to me like she could have severe mental health problems exacerbated by the me/chronic fatigue, that are in turn reinforcing the illness. Not leaving the house and not wanting to see people, drinking, lack of self-care all sound like severe depression to me. I kind of doubt that she is using it as an excuse to be lazy. Probably she is just so unused to normal contact with the outside world that she can't face it.

Thanks for the info, she does enjoy seeing people but she just doesn't like going out. She only goes out for special events eg birthdays etc. She's only been to visit us twice ever. The thing I don't get is that if you have this terrible illness surely you seek for support, but she hasn't. Even after her broken/sprained ankle she didn't seek help, just hobbled around everywhere. She repeats a lot and sounds crazy when she talks. I suppose. Don't understand why she hasn't sought support from other sufferers, doctors etc. she doesn't seem to care about herself, it's very hard for us to help and support someone who won't help themselves.

I can understand your frustration OP, but it may well be that your MIL has given up on the medical world as there really is very little that they can do for ME. Of course it may be that she has self diagnosed and is suffering from depression or another mental health issue instead. It certainly doesn't sound like she is very well.

Having had it myself, I'd say it's a very real condition. However, I think it would be unusual for most sufferers to drink alcohol and smoke in the way that's being described here - unless they had a pre-existing dependence on booze and cigarettes. Anything like that would tend to make someone with ME feel about 10 times worse.

There would be a minority of people whose problems are more likely to have a different origin, who might - consciously or otherwise - adopt ME/CFS - as an explanation for why they can't cope with everyday activities.

Maybe the people she looks to for support, like family, have reacted over the years as you are - judging, assuming she could "just go for a walk" and not realising how terribly awful the illness is, and just how debilitating it is.

Not meaning to have a go at you, but just pointing out a real reason why I don't "go on about ME/cfs" or ask friends for support as realistically what can they do? Its a long term condition rather than something that can be sorted in a few weeks recovery time.

Marianne - I think its more likely the otehr way around. I became quite depressed a year into my diagnosis as I had to give up work and realised that my outdoorsy life wasn't going to be the same again. I could no longer hike etc and in my case I put on a lot of weight. I think that is more likely to lead people to smoke/drink/comfort eating as a way of dealing with loss of life.

What do you expect her to do to "help herself"? What could you do to support her without judging? ONe of the really irritating things in my case was that there was very little I could actually do to help myself. I was a high flyer, career driven, enjoyed hiking and the thing I hated most was that I couldn't somehow solve it in a way I would other things.

I take offence that you say in your opening sentence that I am 'judging'! If you reread my original post, I did not 'assume' she could go for a walk, I in fact said that I 'suggested she might feel better after going for a walk'. I care about her and was suggesting ways to help. See my opening post where I ask for information about this condition.
Please explain how you think I am 'judging' ,my mother in law. I am not, my original post stated facts. She does drink and smoke, and yes I do feel sorry for my father in law as it is hard for him too.
I have looked into this illness and I have read newspaper articles stating that some people do describe the term 'chronic fatigue syndrome/me' as an excuse to be lazy. Again, I am not judging, it is simply what I have read.
I placed this post to try and describe what symptoms my mother n law has. I do not know much about this condition, and was simply trying to find ways to help her. See my opening sentence asking for information about ME.
There are some things she could do to help herself. Stop getting drunk, cut down on the fags. I understand that she is prob doing this to help her deal with things but it's damaging her body plus she smokes in front of her grandchildren, including my lo which I disagree with and I have to remove my lo from the room.perhaps she could see a counsellor for emotional support. These things might not help but surely worth a try.
Thanks everyone for your comments, however futureme I suggest you reread my post more carefully. I am not judgemental just trying to unstandardised something, and I don't like your aggressive confrontational tone.
With all due respect you don't know my mother in law so maybe it's you that shouldn't pass judgement.

Also futureme maybe you should talk to your friends about me. If you do they might be able to help you, at least give them a chance to! I've also heard that people can recover, see post by icklekid who recovered after a long battle with it.

ME/CFS sufferers have fought for decades to have condition recognised. It is utterly devastating that the 'lazy' tag continues to be associated with what is a very horrible illness that robs years from peoples lives.

Some people do recover their lives, then relapse again. It's a cyclical condition. It is also an umbrella term covering many many symptoms and sufferers can suffer some of them some of the time to varying degrees, and obviously sufferers can suffer all of them all the time - with everything inbetween.

You do come across as quite judgey in your OP - perhaps you have been using the Daily Mail to do your research into ME/CFS?

Your FiL deserves all the support you can manage being a full-time carer and presumably a full-time employee at the same time. And perhaps some sympathy for somebody who is too ill to seek help for what is presumably a painful injury.

And actually hear what people with ME/CFS say about suffering from it.

Oh yes. The other thing is that after all these years of behaving as I describe above, she has never told us what was wrong. She hadn't even told her own son, which he was very upset about. We've spent the last god knows how many years wondering what the matter was, and she's known all this time and not told her own son. What are we supposed to think is the matter with her if she doesn't communicate with us about it? It's not our fault if we don't understand when she doesn't communicate! I see it as a cop out saying oh we can't talk to people about it because they don't understand. We're family. She should give us a chance and let us in so we can support her.

Action For ME

NHS Choices Chronic Fatigue Syndrome

The ME Association

The National ME Centre

Many more sources of information available online as well.

Does anyone believe it may be linked to candida overload? I'd be interested in hearing opinions on this.

From the outside, the hardest thing is that you can do so little.

From the inside, my friends who have or who have had ME/CFS report that the hardest thing is that you can do so little.

Every single person I have known who has/had it have been extremely clean living and extremely hard working types. They have all at various points had to accept that you cannot work your way out of ME/CFS.

From those I know with it, I would say that the disease or the variant of it they have has either an autoimmune or an absorption element. I also believe that the disease is somehow potentiated by psychological hardship. I don't really believe in illnesses that don't ahve a physical element or that don't have a psychological element, humans consist of both and so do diseases.

Your MIL's condition sounds extremely unlike my experience of ME/CFS, however I am no expert. She sounds extremely unwell. I would try to offer her the help she can accept - send her funny cards? do the shopping? ring her and give her news of the baby?

Can someone tell me how I am being judgy? Can't see how I am. If you see someone for years and they don't tell their closest family what's wrong, how can you blame people for not understanding? Like I said I am not judging I am just trying to understand. Why would I post in the first place if I was judging? And no, I don't read the daily mail. And for the record I had a friend who said she had me at uni. I am not criticising anyone or judging this illness. There are lots of illnesses people have to deal with and lots of people struggle with them. As I keep saying I trying to understand. ME is misunderstood in my opinion and I am in fact trying to support sufferers by trying to understand. So get off my case please.

Thank you Annandale for your post. It is reassuring to know that some people out there are trying to help me rather than trying to make me out to be a judgemental bigot which I am not.
That's what I was wondering, Annandale whether she might have other issues, perhaps pre existing psychological problems. Thanks for your advice i try to FaceTime her so she can see baby but she never answers I also sent flowers last week. I like the funny cards idea I'll do that too!
Thank you those of you who have put useful and helpful posts. Maybe some sufferers should not be on the attack towards non sufferers as everyone's situation is different. I can see why sufferers are defensive as it is not nice being branded lazy but maybe they should consider that other issues could be affecting other people.

The parts of your op that make you sound judgemental are where you say your mil claims to have it, that you weren't sure if she is using it as an excuse to be lazy and that surely if she does have ME it can be managed through medical care.

Those of us that have had ME have had those sorts of comments thrown at us for years and it is horrible feeling like people don't believe you are ill and think you are choosing to let life pass you by because you can't be bothered to do anything about it.

My mum's struggled with depression over the years and I completely understand what it's like trying to support someone who has chronic health condition and doesn't necessarily want help.

Poste too soon. It is really hard watching someone you love suffer. I really hope the links posted will help you to understand what she's going through and that she isn't being lazy.

Okay. In response.
1 My mil does claim to have it. How is that judgy? I don't know if she has it or not as I am no expert. So she does claim to have it! Fact.

1. I'm not sure if she's using it as an excuse to be lazy. Well I'm not sure if she is? Maybe she has Cfs maybe she hasn't . I don't know do I ? And neither do you! She has shown signs of other problems perhaps mental so maybe she doesn't have Cfs maybe the issue is somewhere else? Can you say for 100% certainty that she's not using it as an excuse to be lazy? No? Do you know her? No.

3 if she does have me can she have medical care. Again I didn't know about this so I was in fact just asking!!!! She doesn't go to the docs for any help so I wasn't sure if they could help.

So, again I ask. How am I judging?

I'm not talking about my mother in law when I ask this before some of you jump on me.
In people's opinion are there people out there that don't want to work ie lazy and say they have me? My dad says he knows someone who has admitted they don't want to work and are filling in forms saying they have me in order to claim benefits. In my opinion if people do this they're the ones that need educating!!!!!!

And for the record, again, I don't know if my mil has me or another problem. The candida thing seems like a possibility so thanks for that snooze box she seems to have most of those symptoms.

There really is no need to be so tetchy in your responses. Saying that someone claims to have an illness is a very loaded phrase that implies you don't believe them.

You say you didn't intend your post to be judgy. Sometimes posts read differently to other people than how they sound in your own head. Those of us that have been there are trying to tell you how your comments come across quite negatively about people with ME and the lazy thing and not being believed when we say we are ill are real sore points for most of us.

I'm really glad you aren't judging your MiL. As I said in my previous post it is really hard feeling helpless when people you love are ill and you can't see a way to make them better. You wanted information and there are some really great websites to look at. I hope you find what you want to know.

Purple daisies I don't understand why you are so defensive.

When you say 'Those of us that have had ME have had those sorts of comments thrown at us for years " you make it sound like a club and that you're shutting people out from trying to understand.

You say "it is horrible feeling like people don't believe you are ill and think you are choosing to let life pass you by because you can't be bothered to do anything about it."

I've not said that! I can imagine it is horrible to hear people say that. But I'm actually trying to ascertain whether my mil has me or not!!! You don't know if she does or not!!

Rant over. Don't make me out to be a nasty person because I'm not.

Yes maybe you misinterpreted my post as all the other posters have been very helpful in their comments. Does it sound better if I say that my mil "says" she has me or is that still a "loaded statement"??!!!!! You're funny purple daisies, I think you need to lighten up and not read things into what is said!!!