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| Chronic Fatigue
Posted: 7/15/2008 7:39:13 AM | | yeah i dont live with her or very near her, i would only spend a few hours a week with her - max. I dont think there is any easy answer to this, i thought that maybe someone could suggest something. Shes been sick along time and im not sure there is anything i can do. I thank you all for your comments and encouragment | |
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Posted: 7/15/2008 10:25:29 AM | | Ive had CF and fibromyalgia for bloody years and years! Yes, she may be very depressed and lacking in self worth, but she also sounds like she's milking it a bit by everyone doing everything for her. She needs to start doing little somethings for herself, that little bit of moving around can work wonders for self motivation and self worth, as well as seeking professional help to get her on the right road to recovery and into the workplace. | |
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Posted: 7/15/2008 10:32:25 AM | From my limited understanding of CF , it is in most cases brought on by a serious viral infection? and most common in females between the ages of 20 and 45.
1 interesting fact that i read stated that a significant number of CF sufferers tested were found to have abnormally high levels of Mercury in their bodies. | |
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| Chronic Fatigue
Posted: 7/15/2008 11:13:33 AM | I was going to write a long post about why chronic fatigue should be taken seriouslly... but I can't be bothered! | |
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Posted: 7/15/2008 12:23:35 PM | | Hi Buddy, reading between the lines regarding your friend; it seems as if HER parents might BE the problem, sometimes behaviour can manifest itself as to what is expected of you (learned behaviour). There is a fab. programme for CF. she should have been offered the chance to take part by her health authority, it is called PACE, the idea of this programme is a combination of either cognitive therapy, physiotherapy and graded excercise, it has great results and can take up to a year to fullfil. In the meantime; there are some other things that she can do to try and alieviate her symptoms, i.e. supplements; reducing caffiene, alcohol, additives, carbs etc. Depression is a symptom of the illness, perhaps you could only agree to see her out of the family home, and express your wish that she should "wear Something Nice", and compliment her on her positives whilst totally ignoring any reference to her illness. Good Luck | |
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Posted: 7/15/2008 12:41:07 PM | | Probably been said before, but depressed people are happy to plod along being depressed. It's a self feeding illness that is very easy to settle into. I know, I did it. It does sound like depression is playing a part, or that fatigue has become depression. When I was in my comfort zone I was fine. I could sit at home, watch TV, fettle with bikes, cook and have a laugh. But take me out of the house and i was a wreck! There were many days when i didn't dare to open the curtains because of what the big wide world would do to me. No matter what the situation, the person this post is about needs help for depression. Whether that is medication, councilling, CBT or a combination of the forementioned. No matter what sort of encouragement, nagging or kicks up the arse are given, it is up to the person to want to recover at the end of the day, and a trained professional can convince someone that recovery is what they want. | |
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Posted: 7/16/2008 1:14:16 AM | Bright 1 - she would probably say the same
Maybe i will insist on meeting her in a cafe etc thats a really good idea, i never thought of that, some days i end up in the kitchen with her mum because she doesnt even get up when i come to visit her! Souinds terrible doesnt it but her mum will say shes just not able so i accept it.. | |
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Posted: 8/2/2008 7:03:55 PM | Just been reading this thread and want to add my experience. I lived in a house when I was a student in Bath and the landlady had a daughter, late teens or early twenties. When I moved in the landlady mentioned her daughter being sick with M.E., and living there I barely ever saw her. The mother was a strict Christian of the type you might expect in 1950s literature, cross round the neck, thin tight lips, stern, cold eyes. I would say mentally ill, something vengeful about her - my feeling was that she controlled every aspect of her daughter's life. Each morning there would be a plate of dreadful salad wrapped in clingfilm waiting for the girl when she got out of bed.
Though the girl was thin and pale, there was something eerie about her - she was not depressed, there was no spark of rebellion in her: It was as if the mother had extinguished the daughter's capacity for life outside routine. No doubt she was on a timetable of pharmaceuticals too. What was obvious was that this 'illness' was nothing to do with the girl as such, but was entirely about the mother-daughter dyad. A pact had been reached between them, one in which the threat of familial violence had been replaced by an 'acceptable life'.
So... to throw a hasty comparison into your request for advice - this is what I feel is clear: your friend won't get the necessary help from any authoritative source, because that would put into question the family's 'expertise' over her. Perhaps they even resent you for what they see as interfering, or will do if you're effective at helping her. I semi-agree with the post that advised you to give up, but not as advice - I think you need to set that as your base point, not that what you might try will destroy your friendship, but the awareness that you now don't have a friendship, and that your friend may be irrecoverable. (I'm thinking of a girl I knew for a short time who was on lithium and about three other anti-depressants, and none of it helped because despite every friend being 'on her side', she was being raped by her father and insisted on returning to him. She told me 'I know it sounds crazy but I want to be with him, to live in his house, to be at home with him' - our friendship ended when she came out of hospital after a lithium overdose and broken ribs from 'falling down the stairs' and accused me of calling her a liar when I said that was obviously caused by her father. The intense power of the family over the more subtle, more diffuse and generous notion of friendship.)
Given that, as someone else said, you must meet her outside somehow. I would suggest you spend an entire morning writing her a letter detailing everything that you liked about her - be funny, poignant, aggressive - don't underestimate what it'll take to break through the current situation. Write what you think about her, her history, her mother (my guess is that you haven't yet fully thought about her yourself), and anyone else involved. Say what you want from her, why you need her back, and don't be sensitive to her feelings, the more piercing you are the greater the chance of having an effect.
So insist on meeting her outside in a cafe - and a long walk perhaps, or a train trip somewhere - knock her out of her familiar life. Then when it seems right give her the letter and say you've been thinking about some things that you'd like her to read. Having it written means you won't back out of what you really mean to say.
What happens then I don't know, but you have to place your relation before her for there to be hope. I wish you well. | |
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Posted: 8/2/2008 8:00:29 PM | GOW have you tried exercise routines? I know that can have plus benefits, although not straight away.
I know this used to work for a lot of people I used to work with. | |
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Posted: 6/6/2009 3:31:31 PM | As a long time sufferer of Fibromyalgia and a recent sufferer of Chronic Fatigue, I find a lot of the comments here are very judgemental. Every person's suffering with these illnesses is of different degrees. What one may be able to do another can not. The last year or so has been extremely difficult for me not just because of my health but also for the attitudes of the people around me and my doctors. Three years ago I was dancing up a storm, disc golfing, bowling, and so on. Today, I'm lucky if I can take a shower or cook a meal without being totally exhausted. This fatigue is not the same one would experience from simple lack of sleep. I have the really odd great day, many so-so days, but more really bad days. It all depends on how much I try to do. The more I try to do the worse I get. On my good days, I want to go like crazy but then I'll crash and suffer later. The way a person feels can change minute by minute, hour by hour, day by day, week by week, and so on. There is no telling exactly how you are going to feel at any given moment. Learning when to say I've done enough is the hardest thing for me to learn. That is why people with these conditions don't like to make committments.
Some of my co-workers have been so indifferent towards me. One said to me, "If you're not feeling well and not doing ....., then you have no-one to blame but yourself!" Even when I could barely walk from the pain of my fibromyalgia, another said to me, "I just ignore the pain!" What I wanted to say to them, "BITE ME!!!!!"
My doctor....well that is another story.
There are many days when I don't feel so well that I...yes...sit around in my pj's with no desire to go anywhere. Think of yourself having a bad case of the flu for a few days. Do you feel like doing anything or going anywhere? Most likely not. Most likely, all you really want to do is sleep or lay on the couch and watch t.v. This is what it is like for someone who suffers from these illnesses. Fatigue, weakness, unable to even think straight, and nausea when you get up and move. But these symptoms can go on for days, weeks, and even months on end.
Will someone with these conditions suffer from depression? No doubt. Your quality of life has changed drastically without your consent. Some degree of depression is normal for anyone suffering from a chronic illness.
I have done a great deal of research on both FMS and CFS(ME) and there are so many different opinions on what will help and what won't. I could have my own health food store with the amount of products I have purchased to try to help myself. Then add to that the different opinions of medical professionals including Naturopaths. Some favor diets and some don't. How confusing!
Although your friend's parents may be enabling her, they are also the ones closest to her, see her on a daily basis, and know how sick she really is. These illnesses are deceiving to the outside world. Most of the time, you will only see these people when they are feeling great or maybe just okay so you think there is nothing wrong with them.
Forget the... you need to do this, and you should be doing that. She will not see you as being supportive. I'm not saying you should enable her illness. Remember, your friend is very ill and although you may feel like running around the block, she may have trouble getting the energy up to simply move from a chair.
Find low-energy activities she likes to do that you both can do together at her home. Playing cards, putting a puzzle together, sitting and chatting, watching a movie, doing a craft, recording a cd of songs she likes. You get the point. Remember, keep the activities low-energy! Also remember she will need to rest often so don't extend the activities to hours on end. That will only make her more ill. I would say keep your visits to only a couple of hours at a time. It will build her spirits up and she will start to have a bit of a life again. Maybe not like the one she had before becoming ill but better than she has been having of late. Be SUPPORTIVE above all. She will start to enjoy your visits. Call before you go over to visit her. Ask her how she is feeling and if she is feeling up to some company for maybe an hour. Don't over-extend your visits. She NEEDS to rest! | |
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| Chronic Fatigue
Posted: 6/6/2009 4:12:47 PM | Just to agree with smileyinkamloops there's no 'standard' with cfs/me. I have it too and it's *very* variable. Some days 70% of my previous self, other times 30% or less and there's no way of predicting which way or for how long, although the 'crash' after trying to do too much in a good period is often the 'norm'. Your friend may find the energy level of her parent's friends more like her own currently (not that all old-agers are more sedentary).
It's up to you whether you can deal with your friend's current lifestyle compared to what it used to be, but it's common that previous friends drift away because of that change in aptitiudes. Depression is common because of the illness and separately, but it's also promoted in some medical circles as the *sole* cause, so not a popular view with sufferers. | |
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Posted: 11/1/2009 4:21:25 PM | If you don't have CFS/ME then you can't possibly understand it. It's not depression or just tiredness. Some people get it so severe that they really are disabled and unable to do much.
I was almost bedbound and constantly sick for months, I'm well enough to work and socialize now, but still feel like shit most the time. It's been 2 years | |
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| Chronic Fatigue
Posted: 11/1/2009 4:52:23 PM | I had Fibromyalgia for 25 years. I thought it was chronic fatigue at first, then got diagnosed with Fibro. But I kept looking for things that would help and ended up finding out I had undiagnosed Celiac. I was an athlete, and so I just tried to tough it out. But exercise often made me feel worse, even though I kept going out for walks and doing yoga.
There is some evidence that chronic fatigue isn't just a symptom of depression, or lack of exercise or motivation:
"Virus Tied to Chronic Fatigue Syndrome"
Many people with chronic fatigue syndrome are infected with an obscure virus that may cause, or at least contribute, to their illness.
The syndrome, which causes prolonged and severe fatigue, body aches and other symptoms, has long been a mystery ailment, and patients have sometimes been suspected of having psychiatric problems rather than physical ones. Worldwide, 17 million people suffer from the syndrome.
An recent study reports that 68 of 101 patients examined with the syndrome, or 67 percent, were infected with xenotropic murine leukemia virus-related virus, or XMRV. By contrast, only 3.7 percent of 218 people without chronic fatigue were infected. Continuing work after the study was published has found the virus in nearly 98 percent of about 300 patients with the syndrome.
XMRV is a retrovirus. These viruses carry their genetic information in RNA rather than DNA, and they insert themselves into their hosts’ genetic material and stay for life."
by Dr. Mercola from a blog on (www.mercola.com)
There are lots of things that you can try that might help. But the family has to want to participate and be willing to try new things, like a better diet, fresh air and sunshine, vitamins, and perhaps some counselling for dealing with the stress of living with a chronic, invisible disability. There are some good ideas on threads on these forums that are under the label of Fibromyalgia. If you put the word Fibromyalgia in the Forums -- Search spot, you will find them.
I am completely better now. But I had to do some very specific things and follow it very carefully. I think that Chronic Fatigue is probably caused by a number of things, one of which is a virus that doesn't go away, like happens with mono. | |
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Posted: 11/1/2009 5:00:27 PM | I've only skimread this so apologies if I'm not much help. It seems there's a few people on here with M.E/fibro/something similar though. Just a quick note to say I've had M.E and fibro for 16 years. I'm 23 now, still living at home. At one point I literally had no friends whatsoever, and the only person who believed and supported me was my Mum. Even now the people I spend the most time around are my parents and my brother, purely because even when i am well enough to go out, there's no one for me to go anywhere with.
Anyway, if I can be of any help at all feel free to contact me. I'll be a lot more helpful via message than on here as it's a tad less of an overload.
But it is very difficult to always remain upbeat when you have something debilitating, though getting depressed during it will also have an adverse effect on physical symptoms. I don't know how much of hers is because she's just not well enough to try and 'get out there' in any way possible, or if she is feeling depressed. But like I say, feel free to get in touch and I'll see if I can be of any help =) | |
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Posted: 11/1/2009 5:04:12 PM | | Should also add that I'm really not going to waste my time and limited energy on any of those who are judgemental. Except to say don't judge until you've walked a mile in someone else's shoes. Believe me, it's not a lifestyle you'd choose. Live the life anyone who is suffering has done and you would change your views in a heartbeat. | |
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| Chronic Fatigue
Posted: 11/2/2009 2:28:06 AM |
Can anyone relate to this or advise me as to what i should do, i fear i will loose this friend and i would just like to see the old her back
Do some research on CFS/ME first. Then if you really are a good friend you'll find the time to go and see her at home and keep in touch.
I'm glad some of the last posters got the thread back on track. As for the others, well that is just something we as sufferers of CFS/ME have to endure form people who haven't a clue just how serious an illness CFS/ME really is. | |
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| Chronic Fatigue
Posted: 11/2/2009 3:55:57 AM | My daughter who is now 25 first got ME when she was around 19. At it's worst she crawled upstairs to get to bed and just remained there, at the moment she is back to full time work but is far from well. She pays the price for a night out or if she pushes herself too much. ME is very hard to understand because you can't see symptoms such as an arm in a sling. Mostly what you see is weight loss (extreme) and lack of enthusiasm. I thought I understood what she was going through until she sent me the following. Her words were that she found this on the internet and this is the best description she has seen :
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For years I’ve been suffering with Myalgic encephalomyelitis (M.E.) and for years I’ve been trying to describe it to non-sufferers. I’ve compared it to a permanent flu, to a never-ending marathon, to insomnia with eventual pointless sleep.
Now that it’s been part of me for so long, I realised how I could get the point across. I’ve not only been living with it, I’ve been battling with it.
The only thing I can think to compare to, is living with an abusive and unpredictable partner.
He tells me what I spend my day doing.
He makes me cancel on friends, and cancel appointments.
He decides whether I can read a book, or listen to music.
He gives me false hope; lets me think that I can achieve an unprecedented step forward, then pulls me back down to his level.
He tells me what I can eat and drink.
He’s indecisive, sometimes he lets me do something then changes his mind midway.
He plays tricks on me, and punishes me when I read his mood incorrectly.
He makes me feel sick in the same day that he let me be happy.
He controls how long I sleep, or if I’m allowed to sleep at all.
He makes me feel weak, when inside I know I'm strong.
He makes me feel pain for no reason.
He makes me afraid of what will happen if I defy him.
He knows I dream of leaving him, and reminds me that I’m foolish for doing so.
But what I don’t let him know, is that I will one day be free of him, and that his power over me will slowly diminish.
M.E. is a hugely complicated illness, and like abusive people, each form has it’s own tricks and tortures. It lets you appear capable and healthy but inside you’re constantly physically and mentally exhausted. Remember, next time you see a sufferer, that in energy terms, he or she may have just climbed a mountain. But all they’ve done is sat and smiled at you. That’s what M.E. does.
It fools the body into thinking that it’s just run a marathon, climbed a mountain, built a house, gone a week without sleep, but all it’s actually done is made lunch.
When a sufferer tells you he or she is a little tired, they sometimes mean is they are so exhausted they could weep. It’s a trickster, that sleep won’t stop. Whether it’s got you in a weak or strong hold, it’s still powerful.
So please, when you see your sufferer friend, remember that they are fighting a constant battle with their oppressor. If you can’t imagine it yourself, don’t try. Just support them. They’ll need it. | |
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| Chronic Fatigue
Posted: 11/7/2009 7:48:24 AM | I just wanted to add my experience to this.
I don't have chronic fatigue, but I do feel really tired a lot of the time and have no motivation to do anything. I went to see my doctor and he thinks it's depression. I am not sure if that is true or not, I don't feel depressed in other ways I just don't want to do much, I am hiding away from the world to some extent. But my point is that it's hard to tell if I am tired because I am depressed or I am depressed because I am tired, your friend sounds similiar in a way. Also with the point of she seems fine when you see her, I am usually quite animated when I see people if they are friends, it is a novelty to talk to someone, but I don't follow through on any of their suggestions for changes, they don't sound like they will work. And with the going out any doing things, I have good days and bad days and I can't be sure I will be up to doing anything. If is something I really want to do and it doesn't feel like a threat/ordeal then I am more likely to be able to make the effort. It could be I use the tiredness as an excuse to not do things that seem a bit tough (as you think your friend might at times), but isn't that a sign of depression?
I think these situations are complex and hard for the person to know what is really going on sometimes, let alone people around them. And there is a stigma to it, I have 'played down' the situation with people around me. I suppose the best you can do is keep in touch and say that you care, maybe you could ask her if there is anything you can do (sorry, you probably already done that), if you lived closer you could make it clear you were available to do things if she ever did feel like it. | |
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| Chronic Fatigue
Posted: 11/7/2009 7:54:15 AM | Guess she is not up for dating then, or is she dating friends of her parents too?
Bit confused in your question think it is : you and this ex mate were friends but she has dumped you and you want to know how to get her back.
Try a letter, "What did I do to you that you are letting our friendship go by the by? Think we could behave like grown ups and talk it out?"
If that dont work - Friendship is a two way thing, walk away she aint being a friend to you is she?? | |
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Posted: 11/7/2009 12:28:58 PM | Val 2
What you describe feeling is exactly how I felt, I thought I had depression for 18 months. Somone I met suggested I had ME after a couple of minutes of talking.
He was spot on, I was depressed because I was tired. My decline has been gradual, 18 months on from that meeting I'm 99% sure that I have ME. | |
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| Chronic Fatigue
Posted: 11/16/2009 8:13:05 PM | Hey, I just want to say that this thread has been really insightful. I don't suffer with CFS or M.E but am trying to grasp an idea of how it effects those with it for a project at Uni. I have also been reading up on the loss of self and chronic illness... really interesting to consider in a dualistic sense, how if the body becomes ill it can comprimise mind and self.
People also go through stages of grief and acceptance when faced with the changes that a physical loss brings, this undoubtedly can present itself as a depressed state...and the intertwining of symptoms makes each case very complex.
As I'm training to be an Occupational Therapist I can appreciate how a person (who is in the process of changing their inner self due to a bodily/physical health problem) may benefit from retaining as much of themselves as functionaly possible. It is important for people to continue to do the meaningful activities that define them (e.g defining roles; such as mother, gardener, sports person, etc) and not to become overwhlemed by the 'sick' role, but then again I guess this is a real struggle, esp when reminded everyday of an illness. Does your friend have an O.T? Just curious
Stace | |
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