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 wondering if anyone knows anything about Multiple Sclerosis? I've looked on the net and there seems to be opinions about whether it is a condition or not. My sister 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 Multiple Sclerosis.
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 Multiple Sclerosis it can be managed through medical care?
I'm just curious as I've always found her very strange..."

Yes she's lazy and just using it as an excuse for benefits. She much rather prefers her rather isolated life not being able to go out much or socialize much. Best thing to do is feel superior, blame her for not pulling her socks up and move on.

People who swear are 'rough dogs'? You sound like a truly horrible, judgemental and smug person OP. And stop calling it me, me is a word that means myself. The condition under discussion is ME, which stands for Myalgic Encephalomyelitis.

I have been diagnosed with ME and Fibromyalgia, on top of arthritis and spinal stenosis; I can't walk more than about 200 yards on a good day, and spend most of my day resting, so I don't overdo things that I do manage.
Exercise makes my ME worse. That's a good way to differentiate depression from ME, actually - regular exercise helps ease depression, but can cause massive deterioration with ME.
The OP has unfortunately posted in a way that comes across very hostile to sufferers, as we are so used to being treated badly by many health providers, general public and family. We are so used to being disbelieved that we have become very defensive. There are no current treatments on offer, apart from some vitamins, minerals, etc that can help a tiny bit. We have to cluster together for mutual understanding and support.
I would have also jumped down the OP's throat except for her mentioning that MIL drinks. I don't know about any of the rest of you, but for me, and the other ME sufferers I know, just a tiny bit of alcohol makes me very drunk, with massive brain fog, sweaty shivers, etc. I don't know anyone with ME who smokes, either, but it's not something that has been discussed.
I'm interested in reading other spoonies' comments on these points.

I'm not sure any of us can shed much light on the mother-in-law. If she has ME than the OP's wish to help may not be that easy to achieve. Because lots of people want to help via practical suggestions, encouragement to try this or that. And ME isn't really the sort of thing that responds to suggestion and encouragement.

I suspect that many ME sufferers do avoid alcohol and cigarettes, because they make the symptoms worse. Obviously if you've got some kind of dependency it won't stop because you're ill. And it maybe that for some people the way booze helps you deal with misery and fags with anxiety, outweighs the fact that physically you might feel loads worse.

However, despite the fact that it's hugely hurtful to people with ME that lots of people don't 'get' it, I think there will be a few people who will want to 'adopt' an illness - and they may pick ME because of the absence of clear cut diagnostic tests that can 'prove' things one way or the other. Plus the fact that GPs aren't helpful and many ME sufferers find the medical profession difficult can provide a cover for not going to the doctor. This of course, would be a kind of illness in itself - Munchausen's. There are people who pretend to have cancer when they don't, though they usually get caught out, because all of the stories about 'remissions' can get a bit implausible.

Given that internet diagnosis is impossible and undesirable all we know is that there's a mother in law who - in one way or another is unhappy and unwell. Her daughter in law feels frustrated by the situation, but there may not be a lot she can do to change things or help. It's probably one of those situations where just visiting from time to time and behaving in a kind, accepting way, is the best she can do.

NB. I had ME - badly - in my mid to late twenties. It continued to affect me in my early thirties, but I went on to make a full recovery.

I am really shocked at your responses OP. You are not coming over well at all on this thread.

Funny how other sufferers didn't take offence.
Maybe every other sufferer here do not have the energy to waste on replying to your comments.

You have come across as incredibly uncaring and defensive. You say that you had seen lots of comments about the negative side of CFS/ME patients on the net, well if you had seen them, I am sure you could have seen lots of real life people with the condition who are barely existing due to CFS/ME.

Overthemill I totally sympathise with you. My DD3 was ill for over 6 years from the age of 14 and had 0% functionality for a long time. Can I encourage you that she is now married and has a lovely son and is coping very well with life. She still has to pace herself, but life is now so much better than we thought would be possible at one time for her. for you and your DD. When our DD was ill we had a really supportive thread on here for mums of teenagers who were going through the same. It was the reason I joined MN and was my sanity saver. Perhaps you could see if there are any others around now to share this journey and all its frustrations with?

Just wondering if anyone knows anything about rheumatoid arthritis? 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 rheumatoid arthritis.
I'm not sure if she's using arthritis 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 arthritis it can be managed through medical care?
I'm just curious as I've always found her very strange?

Kudos to KatyMac. If Op genuinely can't see why this is so offensive, I stand by my initial diagnosis that she has a severe case of Goady Fuckery.

I think the thread raises a genuine issue though.

People who are ill may not always manage their condition well. Sometimes people will make genuinely sensible and helpful suggestions, which the person with the illness may nonetheless reject. Other people will make unhelpful/unsuitable suggestions which the ill person will quite reasonably suggest. This poster might fall into the former category. Or maybe the latter.

I also wish to help an older person in my family

My elderly mother has increasing back pain relating to scoliosis. However, she is very attached to a couple of armchairs my late father bought about fifteen years ago. The chairs are low, with low arm rests and little lumbar support. They have a rounded 'bucket seat' shape They're difficult for an elderly person to get up from, and she's clearly struggling. I have suggested for some time that she replace them, but she is unwilling to do this.

Now the scoliosis is getting more pronounced. I've looked up advice from the Scoliosis Association which says to reduce pain, high backed chairs with proper lumbar support are advisable. I've looked up a company that will do home visits to supply orthopaedic chairs - they'r recommended by Age UK.

But my mother says, no though she might buy a booster cushion. Her perception is that I am just trying to interfere in a way that is unnecessary. My perception is that I am trying to make sensible suggestions which will help her to reduce the back pain, and which will make it easier for her to get up from her chair.

That's sad Marianne especially as there's a sentimental attachment to the chairs.

Is there space for her to keep these chairs and have the orthopaedic one too? Could she be conned into saving the older chairs "for best"?

Overall though I'd say that if you get nowhere you have to respect your mum's ability to make decisions about her own health however very unwise they are. Very frustrating for you I'm sure.

MusicMum18 - I will try to reply to you more when I feel a bit better, I hope the links were useful.

I think most people with ME don't tolerate much alcohol, I know I don't. And exercise generally makes things worse for us. If you have ME, every bit of activity you do, you have to pay for. e.g. when I had it more mildly, I could go to the shops for a couple of hours and walk around, but then I would have to spend the next couple of days in bed paying for it. The batteries take much longer to recharge than they should.

I have ME, I am stuck inside a lot and have missed family events. I can also be forgetful and ask the same question more than once. But for your MIL that could be ME or it could be alcohol.

I'm sorry I can't remember if it has been said, how did she get diagnosed?

"our hypothesis is that the immune system somehow disturbs the fine-tune regulation of blood flow and tissues including in the brain." interview with the Norway cancer doctors who are doing the drug trials for ME.

May I join late?

I had post viral fatigue in my late teens, back in the mid 80s. I spent almost 2 years in bed. Then I worked for a decade or so. I got up for work on Monday morning, clung on until Friday afternoon and went to bed. DH would wake me up for Sunday lunch and a bath and I'd start the cycle again.

Then I went to University, sports science. Became a fitness instructor for a decade or so. I could exercise but not drink, a g+t could put me in bed for a week!

Then I started falling asleep, everywhere, anywhen. Pernicious aneamia. Now I can't move, I literally fall apart at anything above a walk. But I can now drink, almost as though my body relented a little to compensate.

In all of that I have been pleasant chatty and polite, rude, obnoxious and belligerent. In work, out of work, asleep or awake. I will be 50 shortly and DH has arranged a night away. The change in the weather has floored me, my glands are up and I know that I will be sleep around the clock today or tomorrow. I daren't move or drink, I am hoping not to ruin his plans.

DH understands, but even he can be floored by it. His shitty family think it is funny (have spiked my lemonade, made it impossible for me to sneak away for a little time out, etc), my family are bemused. Many colleagues and friends have no idea I have it at all, I am sick to death of the knowing looks I get, stupid questions, 'helpful' suggestions and daft accusations.

I have had this for 30 years. It has been much worse, it has been much better. There is no medical cure, I have B12 regularly and it has not been a miracle cure. In short, it is unreliable, intermittent and utterly shit.

Which is why this makes sense to me:
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.

I couldn't bring myself to explain, and when I did BIL/SIL took the piss (see above). I am usually too knackered to give shit about your pain. My own is often all encompassing - physically and mentally.

And my answer to this:
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.

I couldn't care less what you think, I don't have the brain space for you. I am tired, too tired to make my life more understandable for you. I am not copping out, I am sick of talking about it. That you are family should mean that you react pleasantly even if you don't understand, I don't want to let you in, I don't want your support - it is too exhausting to manage your emotions as well as my own.

I hope that gives you some understanding about how those of us 'in the club' manage from day to day. We aren't trying to be secretive or rude. We are often just about clinging on to the daily round, usually by our fingertips and with a lot of mental begging and pleading "please, just let me get to the end of this and then I will rest/sleep/smoke/get drunk/whatever the hell works this week".

We often lack the wherewithall to give an actual fuck how we come across to those we love the most, we do what we can to keep earning a living (if we have to), getting the job done. Family can get its own grip, don't expect us to notice if it gets dropped.

Maybe your MIL lives with the same desperation. Hopefully she hasn't really processed how selfish you and her DS are, poor you! Imagine how all this makes you feel! Well, no, she won't think that at all. She might be living in that little bubble inside her head that allows her to cling on for another day or so, waiting for the next bright day, when she can move, think, do something without feeling as though her body and brain are lead filled and trying to drown her!

I am bitter, much of my life has been ruled by this. I have regularly ruined my DHs life. I have regularly been absolutely fine, and then ruined it by collapsing and sleeping.

Maybe others 'in the club' have responded to your OP because they have lived this too and your chirpy unthinkingness is just another one of those barbs that sinks in.

It really, really stinks having CFS/ME. Every day. It makes us grumpy, we can lose our patience, we often don't give a shit. Live with it, we do!

Sorry, I meant to end on a lighter note than that. But today is turning out to be a bit more blech than I thought.

I'd agree that communicating was often difficult. But I did usually try because some family members and friends were helpful and supportive and that did diminish the prevailing sense of isolation. Yes, one or two or five people did lecture me as to what I should do - but if I wouldn't take their advice they tended to abandon me as a lost cause. So the problem sort of sorted itself out in the end...

That's sort of how I meant to end, with a 'it's different for everybody, it is even different for any one person, changes on a daily/weekly/monthly/yearly basis. Sometimes I can listen and try out new ideas, other times I just can't get enthused. People wanting to help should listen carefully and gauge what kind of day today is before offering help."

But it all came out miserable and grumpy

This thread popped up in most active and I thought 'Great, a CFS thread' as it is such a little discussed topic. But my god I wish I hadn't read it. Jeez OP, your opening post was obnoxious, highly judgy and downright unpleasant about your poor mil.

Every single person posting on here has tried to explain how offensive your comments are and yet all you have done is moan and bitch about them.

I was going to post a nice long list of CFS websites to help educate you but, to be honest, the best thing you can do for your mil is leave her the hell alone.

CFS is a horrible condition, it has plagued my dd for about half of her life. She is 14. I'm glad my dd is surrounded by people who love and support her. I would only wish the same could be said about your mil.

weirdcat maybe we should start a supportive and interesting thread like you were hoping to see. I have found reading other people's views on here really interesting (when not too wound up )

For anyone with a young person suffering from ME/CFS I highly recommend AYME, it's the Association for Young People with ME and they cover up to age 24 (I think). Their website and chat rooms are invaluable.

To be honest, just reading the OP's attitude has made me cry. I'm very bitter about the crap my dd had to go through to get a diagnosis and her quality of life is very poor despite our best efforts. I think I'll be hiding this thread now.

Sorry to be a wimp, but you just get tired of fighting, y'know?

Yes of course. And you sound very far from being a wimp

Blanche (and others), I nodded along to a lot of your posts (I don't have ME but a different condition which causes chronic pain and fatigue). One of the hardest things is "putting a brave face" on for everyone else (bar DH and maybe 2 very good friends). Especially my family, I don't want them to worry about me, a lot of them have enough going on, and my parents are elderly. I won't even start talking about the effect it has on my DC.

It takes so much energy, both physical and mental, to even try to live anything regarding a normal life. I think a lot of people like the OP genuinely just understand what it's like even to try to hold a normal conversation when (for example) your back is on fire and feels like it's going to break in two.

Over the last few years, I have lost my health, my hobbies, my career, a lot of friends etc and my life, and my DH's, has changed immeasurably. I just don't have the patience or strength to expend what remains of my limited energy interacting with people who don't make the effort to even understand. I don't expect people to understand (I don't think you can unless you live it) but I expect people to try to understand.

People who post like the OP - well you can tell what camp they fall into. It's no surprise people don't want to "confide" in her, but instead of realising why this is, again she makes it ^all about her".

Good post OurBlanche. I completely second that feeling of not wanting to explain myself to people. It's exhausting.

I've had ME for over 30 years and during that time I've had 'remissions' that have lasted years (not completely cured as I would get ME symptoms when I was very busy, or after catching viruses etc) and other periods when I've been too ill to leave the house for months on end. I consider myself very lucky that most of the time I have been able to lead a fairly active life.

Currenlty I am able to work part time and manage my illness by only doing very limited activites outside of the necessities. During the crash periods, when I am barely able to get out of bed, I get extremely unsociable and even the thought of talking to people on the phone, never mind face to face, is more than I can cope with.

Hi musicmum.
I supported a person with CFS and whilst often a hidden illness, I certainly saw first hand how debilitating it can be. And the person I supported also had a baby to look after on her own during the day. She was very determined though and when she felt ok compared to when she had to rest all day, she wanted to improve her life and try and be as normal as possible.

She also finds it hard explaining the condition to others. It can prevent you driving, Ealing even short distances, sleeping properly, carrying things and many other problems that we take for granted.

If your MIL has got CFS, there are local support groups that she could ask about going to with someone to help her there and stay with her. My friend tried to do things little and often so that she did something a couple of times a week but only which were short in duration and effort.....eg. Being driven to a cafe for lunch and then going home. Or sitting in the garden while a friend came for a cuppa etc.

The things you describe though could also be depression. Or it could be led be that if she does have CFS, she also has depression. If she has self diagnosed, it would be good to encourage her to visit her GP. There are clinics she could attend where they might help her with ideas and support,

Afternoon all
Just a quick plea for peace and love and a reminder that if there's one thing we could all do with, it's some moral support.
Thanks ever so

I think oliviamumsnet that we were hoping for a bit more peace love and understanding from the OP. Not the judgypants that we got