to be exhausted with my friend's Chronic Fatigue Syndrome?

[LemonDifficult]

My friend has been diagnosed with CFS. Over the past 6 months or so she's been struggling with tiredness. She's had blood tests which found nothing, she's looked into herbal medicine and so on. A couple of weeks ago the GP said it's CFS.

During the past few months she has become more and more self absorbed. She is single, she wants to meet someone and have a family and is feeling the pressure as she's in her late 30s. Along with this taking up much of our conversations, she talks constantly about her tiredness, or just other aspects of her life. Almost nothing about me, except on a couple of occasions some bitter digs about how parents are so rude/thoughtless/whatever. I'm sympathetic but beginning to get sick of it. I'm also sad about it because we have been great mates. I try, I really do, but my frustration with her is getting the better of me.

If she was to ask me I'd say I think it's depression or stress by another name with sleepy side-effects, but if I so much as hint at that I get the brush off. In my view, she needs a serious amount of counselling to deal with the trauma of losing both her parents when she was young and various other issues that have come up along the way. She has barely had a proper relationship - the last one was 12 years ago. That the CFS might be in anyway be a MH issue is a non-starter with her.

So AIBU? Is this CFS absolutely out of my friend's hands? And at what point am I allowed to say, 'I've done my duty as a mate and listened to how hard it is not being able to get up until noon. Now I'm fed up with your jellyfish comments about the evils of 'screaming babies' or whatever'?

Whatever - as I see quite clearly that you are completely unwilling to accept that YABU I shall leave you to it. I would ask that you educate yourself a bit about the realities of this illness though...negativity is a pretty obvious side effect of having your life change completely and I also think that you are being overly sensitive when your friend makes comments about noisy babies.

Toby - have you read the thread? It's like saying "Oh I don't believe in depression actually"

Right - back to the actual topic

I don't think you are being a bad friend. I think you are supporting someone who is going through a tough time and doesn't appear to you to want to help themselves.

This can turn in to ever decreasing circles, if someone does not want to try and deal with an illness, be that physical or mental.

An example, my df has severe chronic depression. It is hard for my mum, hard for all of us, to help him deal with it on a daily basis. He has good days and bad days. He is a hypocondriac, and has huge anxiety issues.

He is a wonderful man who does all he can to help others, and does his best to help himself. Therefore it is much easier to cope when the bad days are outnumbering the good. My mum of course bears the brunt of this and needs to offload, which she does mainly to me. There is no question we wouldn't support him.

I had a friend who was diagnosed with depression. She has done nothing but moan since. She blames the doctor for not giving her the right ad's, or the right strength of ad. She has had 3 lots of counselling through the doctor but moans that the counsellors are rubbish/inexperienced/don't listen. She blames her dh for not caring about her, telling her she is beautiful, thinking about how she felt when he was diagnosed with a serious illness.

But for her the depression is in no way her control and so she refuses to try and help herself. Others should adjust their behaviour for her to get better. I'm sorry it doesn't work like that. You do need to take responsibility for yourself and at least try and see if you can do something that will make you better.

I think the OP is frustrated that her friend is unwilling to do that. If she did I am sure when she did complain she would be listened to with more sympathy.

Yes, I've read the thread, Shirley. Well, most of it, at least.

I actually fit the profile of CFS to a tee (depression aside). I am completely unable to go down the "Oh, I've got CFS. I can't possibly work/go up the stairs/exercise/look after the children" route, as I've seen done by so many people, because I don't have a choice in doing those things.

Yes, I'm tired. Yes, I am in pain every day. But I'm buggered if I'll go and get a diagnosis so that I can use it as an excuse not to do anything.

Of course depression exists, but that too is something which doesn't exist in as many people as claim to suffer from it.

As far as your question goes, Lemon, I don't know. I have a very good friend who was diagnosed with CFS a very long time ago. He went from being a very well-respected, published author in his field (he was a scientist) to being someone who rarely sees his children for long periods of time (he is now divorced from his wife) and is completely housebound. He has definitely given up, and it's really sad.

Lemon, it may also be though, that you have got into a pattern where she says something like 'I don't think I'll ever meet anyone' and you tell her 10 reasons why that's not true, or she says 'I feel so exhausted, what's the point in trying to get a new job when I couldn't do it' and you tell her 10 things she could do to improve this. This is not always a helpful response. It devalues what the person has just said and is extremely irritating to be on the end of (if I want advice from friends, I would ask for it, otherwise we phone to share stories and don't want advice inserted in every five minutes).

I don't suggest you indulge her negativity, there has been some great advice on here about a) learing about CFS and b) doing practical things to help her and c) going out/doing activities for distraction and so on. But, if you become the Polyanna to her Miss Misery, it just becomes frustrating for everyone. I would try to break that pattern- try asking her advice on something, doing something different, and if you find yourself giving advice, stop! She is processing this right now (hence endlessly talking about it) but most likely will find coping mechanisms and move on.

See, it sounds to me that you're saying that people with CFS are actually just lazy.

Which is just awful.

I'm sorry that you are struggling Toby, but really, to completely dismiss an illness which causes such suffering in such a way is really..well, I'm shocked.

No, Shirley, definitely not lazy. My friend is/was very active. Almost crazily so.

I'm not struggling. I'm continuing with my life without feeling sorry for myself, because I don't have the option to decide not to.

Sorry OP, I was actually talking to Toby.

But that's interesting what you're saying isn't it? That your friend went from a really active person to a lifeless sad person. Poor her - honestly that must just be devastating for her. I know it can be frustrating dealing with someone who is suffering (believe me I know) but she probably can't help it as she is the one in pain.

DYKWIM?

So you're NOT struggling? Being in pain and tired all the time would certainly be a struggle for me..

No need to be so offensive BTW. There are people on this thread who have talked in a heartfelt way about living with CFS, dismissing them all as lazy is pretty off actually.

Toby, I can't believe you are essentially saying can't = won't.

As someone who witnessed can't first hand I find it incredibly upsetting that others might have just assumed she wouldn't rather than couldn't.

I have never once called anyone 'lazy'. That was you, Shirley.

I have chosen not to allow myself to struggle.

The implication is there in your posts Toby. You can't "choose" not to have CFS

Lemon, I have also noticed in my family members with CFS that they can be crazily active (when not ill)- I think that crash and burn cycle (and often accompanying depression in the burn phase) is something that most people agree on trying to avoid in the management of any fatigue disorder. It's about pacing and managing energy, not doing 10 million things as soon as you feel a bit better.

Your friend also sounds troubled in other ways, with not having relationships, perhaps anxiety.

I think the best you can do is continue to be there, but put limits on how much it gets you down too. I don't think you can change her though, or get her to go into therapy if she doesn't want to, or find her a boyfriend. I feel you are doing a lot of running around trying to help her. You probably need to stop doing some of this (why are you sorting out her Christmas, her next date?) and allow her to find her own way, otherwise her negativity and resistance to your plans will constantly frustrate you.

But you can "choose" how you let your diagnosis affect you, Shirley. Much like with any illness.

Where is this concept of choice Toby? If I had an arm amputated could I 'choose' to still lift a cup of tea or carry some boxes?

Just because you can't SEE what's going on doesn't mean that someone has the power to dust themselves off and get on with it. Illness doesn't work like that.
I was unfortunate enough to have a serious infection earlier in the year. Sometimes I had to have a bedpan because I couldn't get out of my hospital bed to go to the loo. Not because my legs had stopped working but because I was absolutely too ill to move, and I am definitely one of those 'get on with it' type of people. Was I being lazy?

Nope. I'm done with this thread I think.

A diagnosis of CFS doesn't equal feeling bone tired and unable to get out of bed.

CFS does that.

It's the same as saying to a depressed person "oh, snap out of it, I felt sad once and I just cheered up!" It doesn't work.

Yes, dickie. You could choose to lift the tea or carry things with the other arm.

Hardgoing, thanks for all the practical advice.

And I do take you're point that I may be over-trying with her. Partly there's a bit of how this thread has unfolded, so maybe I appear interferring. Her Christmas plans are because she doesn't have much family and said after last year that she didn't want to travel to see them but wanted to stay closer to home. We are close, so I offered (not weird IYKWIM).

And she asks to be introduced to men I know. Definitely have to oblige on this one, surely?

Yes, if she's initiating the asking for advice and help, then why not? I was just pointing out that there may be a bit of a dynamic there with you having lots of the answers (and the things she wants like a family and a partner and organizing Christmas) and her moaning at you.

I meant the same arm Toby as well you know. What about the rest of my post or doesn't that quite fit your argument so you've chosen to ignore it?

And I am also done with this thread. I genuinely hope that the few (thankfully) posters who are determined that unless your head has fallen off there's nowt wrong with you, never have to suffer a serious illness.

Your analogy doesn't stand up, dickie. That's why I responded as I did. You can choose to lift things with your other arm. It actually fits my point perfectly.

OP, if you weren't concerned about your friend, you wouldn't be here asking for coping strategies. I think some of the responses have been vicious and clearly CFS is a triggering issue. There's nothing wrong with questioning whether there are psychological aids to deal with chronic illness, and whether there are things you can do to help your friend out of a mental state which is harming her.

Years ago a friend had what was probably a breakdown after her marriage disintegrated (physical and mental symptoms) and spiraled into chronic despair. For months she would call me daily day and night, at work, at home, in meetings, and literally howl and scream for hours from the second I picked up. It was all she could talk about. If she suggested meeting up, it turned out to be places she had a chance of running into the OW etc And yes, there were the little passive aggressive digs and resentment at people who weren't going through similar. Completely understandable in her state, but incredibly draining after months and months and months and months. She lost a lot of friends, and nearly lost her job. I hung in there (just), but eventually would feel physically ill and drained by every encounter, more like her dustbin than a human being. My life wasn't great at the time, and occasionally I needed a friend too.

Although a breakdown is very different from CFS, I think there are parallels when you are in the 'caring' role towards someone with complete and total negativity and monomania. Even worse if they're being a passive aggressive bitch as well. If all they do is vent at you, well it's not surprising that you've needed to vent here. I don't actually agree with some of the responses here which appear to be 'of course CFS makes you negative, be more sympathetic!", when by all accounts you've been sympathetic for a long period, are continuing to be so (Christmas lunch etc), she's not getting any better and is alienating those around her - which will make things worse for her in the long run as she'll get more negative and isolated.

Sorry, this is more of a 'I feel your pain, I've been there' response than a practical one, but yes you either need to step back for your own sanity (not because as some have claimed she's better off without you) or tackle her for her own good. She can't do anything about the physical symptoms by the sound of it, but she can attempt to tackle the psychological elements through support groups, counselling etc. You may be able to get things across more sympathetically in a letter than in conversation.

I think you come across as a good friend, albeit frustrated. This may have been better in relationships than AIBU.

Your friend probably is relieved to finally have a diagnosis to explain why she feels so bad. I am sure she is as sick of being sick as you are of hearing about it.
When people live with a chronic, life changing illness, it is common for their friends to drop off, and spouses to leave them, loose their job, have to go on disability. They usually understand that they are often no longer fun or available to do things with others, and others will stop calling. They often turn to support groups on line, and often the internet is their only friend.
Your friend could do with a support group, a real life or internet one. She can learn some strategies to help deal with having CFS. She probably is feeling pretty useless, and bitter. People who are diagnosed with things go through the 5 steps of grief, (for their old life and the person they were), sounds like she may be. This link is one of many if you Google CFS

www.cfidsselfhelp.org/library/26-grieving-your-losses

The Five Stages of Grief

1. Denial ? This is the ?It can?t be happening to me? phase. Your reflexive response is shock, ?not me? and ?you must be wrong?.

1. Anger ? Once the shock wears off, you realize you are stuck with your situation. You get angry, irritable, possibly resentful. You ask ?Why me?, ?It?s not fair?, ?Is there someone to blame for how I feel??

1. Bargaining ? This stage involves the hope that by making a pact, usually with a higher or spiritual power, you can be cured or at the very least, decrease your symptoms.

1. Depression ? During this stage you may feel hopeless, sad, or easily brought to tears. This is an important stage in the process because you start to understand the certainty of your situation. It is necessary to go through this stage so you can finally transition and reach the ultimate last stage;

1. ACCEPTANCE

The word acceptance does not mean giving up or giving in. It is a realization of a fact in your life to be dealt with by adapting and working with what you?ve been given. You understand the changes which have occurred and are ready to do what you can to make your life better. It is the time you decide to take back control of your life.

Going through these stages are very difficult. You may find you bounce back and forth between them, repeat them or may even skip some, but you will always strive to reach acceptance. Why? Because it is in acceptance we find the peace to not only understand and accept our situation, but more importantly to accept and love one?s self again, no matter how damaged we feel we are. Through this new love and understanding of one?s self, we find the strength to move forward with hope, motivation, and determination to find the ways, the paths, to make our life better, happier and more satisfying.

There is no way to know how long it will take you to reach acceptance. The process is different for everyone, and should not be rushed. It must be allowed to occur in its own time, for acceptance is the stage that must be reached to move forward.

Through this re-learning to love yourself unconditionally, you are ready to take your first step to become a person again.

www.feelingbetteryet.com/?p=150
webspace.webring.com/people/lv/vitamvas/why.html

Crikey what a thread!

OP I think you are both being a bit unreasonable and maybe a break from each other would do you both good.

16 years ago I was diagnosed with ME. I lost my job, many of my friends disappeared and it put a strain on my family and fiance. I was really really lucky that I had a very supportive fiance, who saw me change from a lively, very active outgoing person to someone who had to be carried to the loo. I cried a lot at first, was probably a very difficult person to know and be with but he didn't give up on me. I tried antidepressants, exercise (which made me very ill again) alternative therapies etc etc. Very very gradually, and I mean after years, I began to have some good days. I found that if I paced myself I actually managed to do more than if I did the very common 'boom and bust' type of stuff.

I have had so many negative test results, scratching of heads etc that I thought I was going mad. Then finally as a result of watching a tv programme where dizziness was mentioned I've been diagnosed with a severe balance problem. All those years of not being believed

I will never get back to full health, but I have found a life I can manage. I have also found out who my true friends are! Believe me, being ill is not a choice. It can take time to come to terms with, but support is vital to stay positive.

I feel really sorry for your friend and hope that she can find the support she needs www.actionforme.org.uk are great!