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'?

Hi Wretched, thanks for the judgement about how many paragraphs I've managed to write, much appreciated. I am housebound, I can only walk a few steps, the rest i have to be lying flat in bed or on my sofa. I have been too ill to leave my flat for 20 months. A few years ago i was bedridden for nearly two years, unable to watch tv, read, type, use the pc and could only talk for a few minutes for a few times during the day.

I have improved but as said i am still housebound. The one thing I can do as long as i pace it is go online and write a few paragraphs. Writing a few paragraphs is my limit, I then lay quite and can write a bit more. Today I have written a bit more, tomorrow i will have to write a bit less.

I am sorry you have a chronic illness. I am glad you are able to have fun with your friends and not have to talk about it. I agree soley talking about one's illness all the time would be boring. However, if you have an illness that has changed your life so dramatically that you can no longer work, participate in social activities, do all the little things that make life the joy it can be, as well as the sorrow, then if friends want to still be in your life, they have to acknowledge you have this condition and it can't be ignored or be said to be it is something else, such as depression when it's not that. That is all I am trying to share. As i am unable to leave my house, I cannot go out and have fun with my friends. Two have stuck by me, come and visit me even though I had to move back to my parent's town as I was too ill to manage on my own.

The two friends that have stuck by me visit twice a year and write me long chatty letters a few times in the year, keeping me in contact with their lives and the outside world, which I love. We don't talk about my illness endlessly, boring for all, but I know that they know i have not chosen this life and i value so much that they still keep me involved in their lives, even though there is little I can do with them. THey have lost out too as i| am no longer the friend i was, no more travelling together, going out dinner together, going to the theatre, but they still value me as I do them. The friend who bailed, someone who had been a very close friend for years and who I had given a lot of support over the years as well as having fun just didn't want to know. It was easier for her to believe my problems were due to depression not physical illness and as I wouldn't deal with the depression (which I didn't even have, although suddenly having to use a a wheelchair and not being able to leave the house was emotionally difficult, as it would be). I'm not looking for pity. I am just trying to share that true CFS isn't depression, it can be hugely life changing and to acknowledge it for what it is is vital should the friendship continue.

IF we are talking about close friendships here, then a bit of reading about a life changing illness that a friend is unlucky to get surely is not too much to ask. Interesting that you think it is.

I don't think it's too much to ask. It wouldnt occur to me that my friends need educating about something inherently personal to ME. My husband and parents research my illness because they will have to care for me in later life. My friends are for socialising and having fun with. If they ask, I will tell, but I would never expect anything more.

Margoandjerry, I do take on board what you are saying that if the friend is only talking about herself, her problems and showing no interest in Lemondifficult's life then that is not on either. I just wonder whether Lemondifficult's friend continues to talk about her illness more than is respectful because she picks up that her friend doesn't believe her symptoms and is trying to convince her friend she is really ill. Obviously this is not helping either as her friend just feels she goes on and on showing no interest in her life.

I wonder if you do so much research about your friends problems. When you have a break from talking about your own that is.

Wretched, I hear what you are saying. However, if the illness actually prevents normal socialising as the person is too ill to do it then friend's need to know why you can't do what you used to do. Before my illness got even more severe, I wouldn't have enough energy to travel across town and then sit up for dinner in a noisy environment, but i might be able to enjoy a girly night in with a take away, with a few rests. Some friends are willing to make the compromise and come over to your house, some aren't. Some friends don't want to make the compromise because they just want easy, social friendships and to not have to give up their night at a restaurant. Then others don't want to make a compromise because they don't actually believe you are unable to travel across the restaurant and think you are being some kind of princess or being awkward for not going to the restaurant. For the person who is ill and misses going out to the restaurant, it is very hard to know that your friend doesn't believe you can't do it and will not try and accommodate your needs.

It's horrible losing your independence and having to ask people to help you by not going out together but coming over and then staying only for a couple of hours because you will be too exhausted after that amount of time. You know you are asking for help and it's painful when some aren't willing to give it.

THe hard part is some friends that you thought were close, you realise really were just with you for socialising and when you can no longer play, they bail. Low expectations do help, but it still can be very sad.....I will say I am talking about close friends here, not people you socialised a bit with.

Bit unnecessary wretched imo.

But I do think friendship is a 2 way street, even when people are seriously ill. The OP has been around for 6 months listening to her friend talking virtually only about herself and her illness.

I think most people are happy for friendships to be unbalanced when a friend is having a hard time. But the other person still needs to show an interest. I have known people dying of cancer who still ask after dcs of people visiting and show a bit of interest in other people visiting. I have also visited people in psychiatric hospitals who ask questions about the people visiting.

I think its fine to show no or little interest for a while. But 6 months is too long.

Lemon
I had CFS when I was 23, looking back on it, yes I was self absorbed (most 23yr olds are). But it was also hugely debilitating and it is a horrid illness to go through and like any illness of that scale, sometimes, the sufferer needs to go through a grieving process to come to terms with it, hence the talking it through.

I found CBT really useful for me, my CFS was a crescendo of shit, that had built up since my parents divorced when I was a kid and my dad being an allround dick, when I needed him the most. I personally feel it was my keeping it all in, that manifested itself physically and I always say that it was a mental and physical illness. CBT is very effective for it.

However, following my recovery (12-18 months), I was diagnosed with OVarian CAncer (27yrs old). Both are different yet equally challenging illnesses. Counselling helped me through this also. I also went through a phase of needing to talk this out, to come to terms with it

CFS can make you very depressed, through sheer exhaustion and AD's can help alleviate this.
Sometimes, just having a diagnosis is a relief and that relief can result in the need to talk it it out.

Just walk in her shoes for half an hour.. she may have reached a moment in her life where the past has caught up with her and she finally needs to acknowledge and deal with it... and sometimes her friends are just what she needs..

Ok wretched, I think you obviously view me as self absorbed and I view it I am trying to explain how debilitating and life changing m.E can be and yet it is often not recognised or wrongly viewed as depression. Depression is awful but it's a different condition and what will help for depression will not help for CFS/M.E.

I hope I am a good friend, I try to be. I am interested in my well friend's lives, their struggles with raising young children, balancing work etc.. I love being a listening ear and i hope I am a good friend. I am happy that they can get out and about and have busy lives as it's not their fault I am ill. i am crap that I can't actually go and see them as i'm too ill and that's why I hugely appreciate my friends that have tried to stay in contact with me despite effectively being imprisoned in my home.

sleepyowl, you have written more than I can possibley read, so you might have answered this already, but how can you be sure CFS isn't a sympton of depression, ever?

I think you are magnificently demonstrating exactly what the op was moaning about. Carry on. Every single one of your replies involves YOU and things you CANT do. It wouldn't make for scintillating conversation for a social gathering. That may come as a shock to you, as clearly these issues weigh heavily on your mind, as they would,neith you being housebound and unable to work and carry out your normal activities etc. But I promise you, it will not loom as large for everyone you know. That is a fact whether you like it or not. And not everyone will put your needs first all the time. So friendships will develop by natural progression. There are those who will and those who won't be the kind of friend you need/want whatever.

And I never mentioned depression. You brought that up.

sleepyowl, in my experience, friends with a diagnosis of ME HAVE been helped with anti depressants

Thanks Lesley for the support. I do agree that Lemondifficult's friend may have become too self absorbed and just talking about her for six months is not healthy or respectful. I just picked up that Lemondifficult might not be acknowledging what is actually wrong with her friend. I don't know either of them and I might be wrong.

Flipperty, I am sorry for your many troubles when you were younger and I am glad that anti d's helped you with the exhaustion. I am also sorry that you then have to deal with ovarian cancer.

I would say that under the term CFS, some people have fatigue and that can be helped by anti d's and CBT; however neurological M.E is not just fatigue but effects many bodily systems with myriad symptoms and for most is a life time illness. For these patients CBT and anti d's will not improve the physical illness. Like any physical illness, counselling can help with dealing with it. I don't know perhaps lemondifficult's friend has got chronic fatigue and not M.E. Until we have a diagnostic test, it's hard to say unless one has a thorough consultation....Right, will stop now. Have reached my limit. I know some will be pleased to hear that.... :-)

Ah, I know i said i will stop but just saw asiatic question about how I can be sure CFS is not depression and I can't not answer even though i should as pain kicking in.

As I said above with depression if the person tries to do something, as hard as that can be, they can feel better. With CFS/M.E exertion makes you worse, so you want to do something, but there will be payback in increased pain, exhaustion, noise sensitivities and so on. The full medical term is post exertional neuro immune exhaustion. Also people with CFS have sore throats, head pain, nerve pain, orthostatic intolerance and many more symptoms that people with depression just don't have. A doctor once told me put someone in a field with a bull with depression, they will suddenly have to run and they may temporariliy feel a bit better due to the endorphins released. Put a person with M.E in the field with a bull, they will have to run but the next day they will feel dreadful, with all their symptoms worse.

Wretched, I mentioned depression because lemondifficult said how she believed her friend didn't have CFS but depression. You are of course right that there are limits to what one should expect from friends and it's unfair to expect a friend to listen on and on about your illness. As I said to you, i try and not talk endlessly to friends about my m.e as i know how boring it must be to them, even though it's of great interest to me. I am not shocked that it will not loom large for others. I've gone into detail here because i felt the poster and some other commentators hadn't understood exactly what CFs/m.e is and I had the same experience, but as the ill person where my friend didn't believe my physical limitations and thought it was depression as Lemondifficult seemed to think about her friend.

You are right too that with a life changing illness, one has to accept some friendships will end. It's not easy, though, and i am sure that I haven't come to terms with losing two very close friends that I had known for years and who I had shared much with. I do need to work on lowering expectations, but i also think it's very sad if someone bails out on a good friend. I like to think if the shoe was on the other foot i would be there for my friend, but maybe i wouldn't have.

Asiatic, when I was bedridden I took anti d's as life so debilitated did, not surprisingly, have an effect on my mood. THey made no difference to my physical symptoms, just helped me deal a bit better with how ill i was. I still take a low dose to help me deal with being housebound, makes no difference to my physical symptoms, but keeps me reasonably happy despite being housebound. As was mentioned earlier, what does not help it's that within the term CFS some people with just fatigue due to possible depression are wrongly given a diagnosis of CFS which is interchanged with M.E. M.E is a distinct neurological illness with discrete symptoms and is not simply chronic fatigue.

I do believe there is such a thing as cfs and me - although as I said I think people are "diagnosed" with it when they haven't got it.

But I don't agree that with depression you always feel better when you do something. ime there are 2 kinds of depression. There is depression caused by immediate difficulties. ime you do feel a bit better when you do something whatever that is as you feel you have achieved something however small.

But I think the other kind of depression comes from more long standing causes and often when you try to do something you can feel worse. ime with this kind of depression you can feel slightly better curled up in bed, lying on the sofa, etc. But actually doing things makes you feel worse and more tired.

sleepyowl I didn't specify that my friend had CFS she had an alternative condition in which she refused psychological help, medication, help from friends and food - her choice admittedly. I received many t/cs threatening suicide, I didn't know how to help. I didnt withdraw my friendship, I just had to set boundaries in order that I could get some sleep. Please read before you leap.

PPs A colleague had CFS and that was what she was advised, however the main theme of my post was to help OP steer the friendship in a positive direction rather than lose it whether that is exercise (ill informed obv.) or something that would be considered to help.

Asiatec- cfs often develops post virally. Can you see any kind of connection between a post viral illness and a sudden change in mental health? I cant see the connection.
As I said before- the issue is around cause and effect - are people becoming depressed because their life is suddenly so limited?

By way of update- my Gp diagnosed cfs earlier in the thread. Sometime after my rhemertologist dismissed this and diagnosed post viral fatigue- which thank fully is usually far less serious. I'm 60% recovered now and will never take my body for granted again.

My sister has cfs (and has for 5 years albeit relatively manageable) after a teenage bout of glandular fever. This is a common and well recognised cause of cfs/me. What could that have to do with mental health?

As I said I do think there is such a thing as cfs and me. For example, I know one person with cfs who has had it for years where tbh as an admittedly non medic, it does seem different to depression.

But I do think people with depression get misdiagnosed with cfs/me or decide themselves this is what they have.

And I do think the myths around depression don't help this. So you can get pain and other physical symptoms with depression such as aching. Depression can make you very tired. And there are different kinds of depression.

Dr's actually used to have 2 different names for depression - endogenous and exogenous(?) I think, in recognition that there were different types of symptoms. Nowdays it is generally recognised that depression isn't usually clearly cut into 2 categories like this.

But basically the idea is that in 1 you wake up feeling crap and begin to feel better as the day progresses and you do things. In the other you wake up and maybe don't feel too bad, but actually feel worse as the day progresses and you do things. I do think the idea that depression always feels a certain way means that people don't always recognise when they do have depression.

I personally think me and cfs is a bit of a dustbin diagnosis in that lots of people why drs don't know what they haveor suspect it isn't real, diagnosis this. For example had a friend who was diagnosed through blood test with physical llness who was 1st told it was me.

If there is a test developed for me/cfs I suspect we will find some people with this diagnosis who have it, some who have depression/mh problems and some with other undiagnosed physical problems.

Sleepyowl, hope you feel ok after all that mammoth typing last night.

I became ill with ME 15 years ago, was very ill for 5 or so years then gradually and consistently got well. Most days I forget I ever had it , although I look after myself well.
I felt concerned for you last night cos from where I stand now , there was so much of what you said that I can see will work against you getting well.And that's the important thing really isn't it? Being well, letting the healing come.

The argy bargy over ME/Cfs/depression/physical/psychological will go on and on. I totally get the need to defend, explain, inform, teach, but your need to look after yourself is much greater. That's the way that healing lies.
There was a gorgeous full moon last night, did you see it?
Much love.

lesley33 - you talked about people with depression getting misdiagnosed with ME or CFS, yes I think it is a problem, this is why people are trying to encourage the use of the Canadian Criteria for ME/CFS (I think this is soon to be updated to the International Criteria). The Canadian criteria offer a more precise definition of the illness. Professor Leonard Jason has written quite a bit about the importance of good diagnostic criteria to make sure you don't misdiagnose people with depression as having ME or CFS.

I registered after being a long-time lurker to comment on this thread, I hope i can help.

First off, it's entirely possible that your friend always had CFS in some capacity, just undiagnosed or treated as something else. Stress makes it worse and she had two bereavements when she was very young, CFS is known to degenerate over time as stress increases and becomes harder to recover from. It's not a mental health issue, although it's possible if she got a handle on her stress and resulting depression she'd actually feel better.

I'll level with you here, I have fibromyalgia and it's a pain in the hole. I've tried very hard to live a normal life with it, most people who know me didn't realize I was ill until I told them. They just thought I was getting sick because I work with children and pick up infections from them. I'm naturally high-energy despite the fibro (if I didn't have it, I'd be one of those people that never stops moving) and I've had depressive spells but they never last long. I work very hard at keeping my social life intact because I know if I don't, I'll become isolated. I don't see my friends as often as I'd like to because of the bad days and I don't talk about the pain or how tired I am much because it makes them uncomfortable, and that's not their fault or their problem.

That said, I am in constant pain, ranging from mild to excruciating. I can be cranky, I shouted at my housemate not too long ago for waking me up after I'd just managed to drop off. Sometimes the pain is all I can think about so having a conversation with me is difficult, and lately I've had to have people lift me out of chairs when my limbs lock. I'm lucky that I have a few good friends that understand what I'm going through and I so my best to stay positive, but I have lost friends because of this, people who just never make an effort to stay in touch with me because it's too much like hard work for them. That is deeply upsetting and hurtful for anyone to go through, and although I can brush it off it's not that easy for everyone.

Try and empathize with your friend if you can. Imagine if everyone you know had stopped talking to you because you had a baby and all you ever talked about was said baby and how tiring being a mother is. These things happen. Your friend can do a number of things that would help her make the most of life with her condition, and as a friend you could encourage her to do these things. I find gentle yoga helps my pain and energy levels, and it may be useful for her to talk to a therapist to deal with her bereavement/depressive issues.

Anyways, sorry for the essay. I hope it does some good.

Georgethecat, please accept my apologies for jumping to conclusions. Yes, unfortunately the medical world can still give out inappropriate advice - although it is thankfully slowly changing - on how to manage CFS/M.E such as suggesting exercise which can make the person worse. I'm sorry if I sounded overly harsh about you suggesting it as it's not your fault that some doctors have been so clueless when it comes to m.e. Your friend did sound very draining.

Lesley, as I said I do agree with you that until we have a diagnostic test some people with depression, post viral fatigue and so on will be wrongly diagnosed as having M.e either by a doc or by themselves. I've not experienced clinical depression (although have had some reactive depression due to being very debilitated, not a problem at the mo, thankfully) so I am sure i'm ignorant about a lot of it. I am aware that severe clinical depression can also give physical symptoms, pain, aches and so on.. that there are diffferent kinds of depression, different levels of severity etc.. i know if one is very depressed they can be catatonic and not be able to do things. I gave the bull illustration not to say a person with depression can easily run in the field, just as a person with M.E can't, but that if they had to, some may feel a bit better the next day. i hear what you say that might not be true for all cases of depression. As I said, people with m.e experience post exertional neuro immune exhaustion after too much activity, which is a flare up of all symptoms after going over their activity limits, including immume symptoms, like sore throat, increased temperature and also increased sensitivitiy to noise, light and smells.

Alwaysathome, I am very glad you have now recovered from your ill health. You write 'there was so much of what you said that I can see will work against you getting well'. I know you are trying to be kind, but I feel frustrated with that comment. You don't say what it is that i wrote that made you decide that there are things working against me getting well, but i am guessing, correct me if I'm wrong, it's because i alluded to the fact that for many people M.E is a lifetime illness. By me saying this I'm not giving up, preventing myself recovering, I am accepting that full recovery may well not happen. However, I always hope that i will improve, and have from my bedridden state (unlike you, my illness didn't start bad and then consistently get better, but was moderate for the first few years and then became severe a few years ago) and even perhaps recover, but one also has to balance that with accepting one's life at the present and finding ways to live well within the limitations. Your statement, though i know was full of good intentions, is actually very judgemental. It's great that you had an illness that consistently got better after five years, just please bear in mind, however, positive and focused some people with M.e are, full recovery alludes them and not because of their attitude.

The subject of this thread was Lemondifficult asking whether she was being unreasonable to find her friend draining? As much as I was trying here to give the possible perspective of Lemondifficult's friend, I agree that friendship is a two way street and it was not right for Lemondifficult's friend to constantly go on about her symptoms and not listen to her friend and show an interest in her life. However, i just wondered and was trying to give the perspective that Lemondifficult's friend may have picked up that lemondifficult didn't believe she had cfs but depression and if she got help for it it she would not have all her physical symptoms. If this is the case Lemondifficult's friend may have talked more about her symptoms than is appropriate as she was just trying to get Lemondifficult to understand what is wrong with her. Friendships will suffer if a person doesn't accept the reality of what the other person is going through.

I try on the whole to not talk about my M.E to my good non M.E friends as I realise it's boring, but importantly I know they know I am physically ill and they recognise my physical limitations and with that understanding we can enjoy our friendships without the need to talk about my illness constantly. Someone wrote about their illness 'I don't want to be defined by my illness, but i do want it acknowledged' and I just wondered whether Lemondifficult was not acknowledging what her friend was going through which in turn caused Lemondifficult's friend to constantly justify why she couldn't do things, which was understandably irritating to Lemondifficult.

Bloody hell who bought this back from the dead and WHY????

Ps: Just to add, when I wrote that Lemondifficult's friend may have picked up on that Lemondifficult didn't believe she had cfs but depression and if she got help for it all her physical symptoms would go, I am not suggesting that even if lemondifficult's friend did in fact have depression and not CFS, that depression is easy to treat and hey ho all is well. As I said, I don't know much about depression but I appreciate it can be a very debilitating condition and not always easily treated. I am just saying CFs/m.E and depression are not the same. As Lesley says, a diagnostic marker is what is needed for M.E and research is starting to happen that will hopefully produce one.