Chronic Fatigue Syndrome/M.E. Society watch

Amykins · 26-01-2009 01:03

(Original post by Addnightshade13)
And you're terribly lucky to have a sound BF AmyKins, he deserves a beer ( if he drinks lol). us blokes are notorious for being unable to cope with illness in relationships ( unless its us). but its good to see there are some great guys out there.

We've been together nearly 5 years now so he's been there through the amazingly well phases to the too-ill-to-move phases. He's a good bloke, especially with this relapse, but as he said when one of our friends said how brilliant he's been, "he loves me and doesn't want to lose me so of course he's fine with it". We're planning on buying a house, hopefully this year, which will be a new challenge. It's hard because we're going to have to find somewhere he can afford on his wages alone because my health will always be an issue in regards to work. Maybe I've just been lucky but I've always been upfront with people (friends and partners) from that start about having ME and how it affects me and no one has ever had an issue with it.

Teao the Cat · 26-01-2009 01:29

(Original post by FadedJade)
awww that was me! changed my usertitle ages ago though.

Do you guys (those who already have a diagnosis) actually ever bother going to see your doctors? I simply don't see the point, given that there's nothing they can do about it.

Ah-ha! mystery sloved... I have this terrible habit of not knowing usernames, and remembering people by their avatars and sigs... Okay, sorry, i'll stop hijacking your thread now!

DiamondsAreForever · 26-01-2009 01:34

I have a little issue to raise... my best friends boyfriends mum has M.E but she resorts to weed to kill the pain and such like... and its putting a strain on her relationship with her boyfriend, he has got into the culture of weed and his brother, is there anything alternative she should try ?

Hammers_Gal · 26-01-2009 03:03

I have M.E have had it since 2003 when I was 16. Have improved A LOT from where i was, have fnally got to uni this year!!! Am also on AYME under Pink Princess

InArduisFouette · 26-01-2009 03:22

to the little hero who decided to neg me ... face ... bovverred ...

if you want to have a 'oh woe is me, aren't i so (physically ) ill '' thread take it to a society or to a specific topic board (i.e. not here)

if i'd posted the 'traditional' physical health view of ME - where the sole treatment advice is 'pull yourself together and stop being such a silly little girl' then criticism is justified,

all your actions have done is reinforced the perception that people with ME are somatising and are not open to all possible causes and exacerbating factors

username165223 · 26-01-2009 10:13

Or the fact you are just an ignorant little twerp.

(Original post by StandingOnAir)
... I wish I could say the same for my teachers - it seems like so many people with ME go through awful things with their schools, who just don't understand it.)

I got "asked" to leave my grammar school at the end of year 12 as they were worried I'd be pulling down the averages of the results and that my absences were a disruption to the classes I was in and to the teachers despite my teachers giving me loads of support. Ironically the two AS levels I did that year, I did better than about half the class.
The college I am at now, doing my 2nd year is hell. Last year it was fine, I had support and stuff but this year I've been put on report for my absences despite sending in doctors letters and always ringing in to say when I'm absent. My law teacher is such a cow and has put in official complaints about me being off and saying my attitude is offensive cos I just come in and out of her lessons with no care, despite the fact I work hard in her lessons and work hard out of her lessons to keep up. She's really made me feel crap the last few months.

(Original post by FadedJade)
Do you guys (those who already have a diagnosis) actually ever bother going to see your doctors? I simply don't see the point, given that there's nothing they can do about it.

Not really because everytime I do all they say is to rest and pace myself which isn't happening when doing A-levels and stuff. I just have to do what I can really.

StandingOnAir · 26-01-2009 15:18

(Original post by Hammers_Gal)
I have M.E have had it since 2003 when I was 16. Have improved A LOT from where i was, have fnally got to uni this year!!! Am also on AYME under Pink Princess

That's brilliant. How are you coping at uni?

(Original post by charla)
I got "asked" to leave my grammar school at the end of year 12 as they were worried I'd be pulling down the averages of the results and that my absences were a disruption to the classes I was in and to the teachers despite my teachers giving me loads of support. Ironically the two AS levels I did that year, I did better than about half the class.
The college I am at now, doing my 2nd year is hell. Last year it was fine, I had support and stuff but this year I've been put on report for my absences despite sending in doctors letters and always ringing in to say when I'm absent. My law teacher is such a cow and has put in official complaints about me being off and saying my attitude is offensive cos I just come in and out of her lessons with no care, despite the fact I work hard in her lessons and work hard out of her lessons to keep up. She's really made me feel crap the last few months

Sorry to hear that. This is probably a silly question, but have you and your parents had a meeting with your teachers (this law one in particular)? Perhaps if you sat down and explained it to them, they might have an easier time understanding why your attendance is the way it is. (Or perhaps not - some teachers are idiots.)

It's awful that so many schools are more concerned with their results than the wellbeing of their students. After having put in a lot of effort for English Lit GCSE, the English department told me they weren't allowing me to take the exam, because I hadn't been in enough to cover the whole course and they didn't think I'd get an A. I took it to the headteacher, who let me take the exam, and I got an A* (and almost 100% in all my English and English Lit modules). When teachers are being awful to you, sometimes the best thing to do is to turn it into motivation. You want do to well, if only to show them how stupid they were being.

Groupie · 26-01-2009 15:27

I have lupus and part of it is that i get chronic fatigue along with the other stuff. It's such a pain especially when I cant get out of bed cause of the fatigue and my joint and muscle pains, but I try my best and just make sure when im ill i relax as much as possible.
I've had it for about 2 years now, and i still managed to do a-levels and now at Uni, but i think its a lot more hard work than someone without chronic fatigue as its impossible to focus.

Also, forgot to mention, theres a website called butyoudontlooksick.com thats got loads of helpful stuff for people with invisible illnesses/disabilites, especially about explaining it to people, because sometimes people think your a hypochondriac, even when your not

Addnightshade13 · 26-01-2009 23:20

(Original post by charla)

I got "asked" to leave my grammar school at the end of year 12 as they were worried I'd be pulling down the averages of the results and that my absences were a disruption to the classes I was in and to the teachers despite my teachers giving me loads of support. Ironically the two AS levels I did that year, I did better than about half the class.
The college I am at now, doing my 2nd year is hell. Last year it was fine, I had support and stuff but this year I've been put on report for my absences despite sending in doctors letters and always ringing in to say when I'm absent. My law teacher is such a cow and has put in official complaints about me being off and saying my attitude is offensive cos I just come in and out of her lessons with no care, despite the fact I work hard in her lessons and work hard out of her lessons to keep up. She's really made me feel crap the last few months.

.

hey charla .
I had similar problems at the grammar school, I came out with 6as but was still taken to one side away form all the other students and told that i should "seriously" consider the implications at staying on at such a prodigious institution with such an ilness. it took all i had not to key the headmasters bently on the way out.

I was recently in a discussion on the ayme forums wiv a gal who was going thru a social desert. has anyone else experienced the strange feeling that M.E has cause you to cease existing in the same plane of reality as all your friends.?

Addnightshade13 · 26-01-2009 23:29

(Original post by zippyRN)
to the little hero who decided to neg me ... face ... bovverred ...

if you want to have a 'oh woe is me, aren't i so (physically ) ill '' thread take it to a society or to a specific topic board (i.e. not here)

if i'd posted the 'traditional' physical health view of ME - where the sole treatment advice is 'pull yourself together and stop being such a silly little girl' then criticism is justified,

all your actions have done is reinforced the perception that people with ME are somatising and are not open to all possible causes and exacerbating factors

okay...where to start. it seems you are individual with a burgeoning negative reputaition on TSR, who is raising the argument for M.E as being psychosomatic. Al though I disagree, for the sake of argument ( and reading some of your other posts mate you sure as hell like to argue)
may i present you with the fact that most major psychological disorders are either caused by, or are diagnosed through the detection of distinct changes in brain chemistry. and M.E Cfs call it what you will. has up to this point not been related to any one set of brain chemistry alterations from that of a healthy person. the research has been done.
from a semantic perspective.
holding and or sharing the point of veiw.
"if you want to have a 'oh woe is me, aren't i so (physically ) ill '' thread take it to a society or to a specific topic board (i.e. not here)"
serves no purpose other than to alienate yourself from other posters on the board and to make you sound callous. ( both effects may be what you intended.
also we have as much right to post about your experiences with M.E on this board as you have right to flame them.
so in short get your facts sorted or go an pee in someone elses milkshake.
ta

username165223 · 27-01-2009 10:54

(Original post by Addnightshade13)
I was recently in a discussion on the ayme forums wiv a gal who was going thru a social desert. has anyone else experienced the strange feeling that M.E has cause you to cease existing in the same plane of reality as all your friends.?

I tend to have cycles of it so I have a few months where I'm social and going out loads and then a few months where if i go out once its a miracle. Although the last few months have mainly be down to money issues not just my physical state I've noticed the number of things I get invited to is getting less and less and I find out about my friends going out through them saying about it on facebook or when they start uploading photos or on the monday at college when one of them mentions how good their weekend was.
As much as I like them, I kinda can't wait to go to uni and get some less flaky people to be with, especially ones who try to understand it a bit better rather than complain that it's not fair I don't seem to struggle academically.

FadedJade · 27-01-2009 11:06

Personally I've found it a lot harder to make friends at uni (I've only just started to feel properly settled here and I'm a third year) whereas the friends back home have always been there.

SovietRussiaFH · 27-01-2009 12:18

Knowing M.E., Knowing you!

Jazmine · 27-01-2009 12:39

My auntie and two of my friends have ME. One of them got an expensive treatment for it (which at the time at least was not verified as to whether it really works), he says he feels better. But, I dunno...

Why I know three ME sufferers and you know none, I dunno. I thought it was quite common. I know several people with chronic fatigue and other such conditions where things like tiredness and pain are symptoms. Quite used to them just falling asleep all the time and such, bless.

Addnightshade13 · 27-01-2009 13:18

(Original post by Jazmine)

Why I know three ME sufferers and you know none, I dunno. I thought it was quite common. I know several people with chronic fatigue and other such conditions where things like tiredness and pain are symptoms. Quite used to them just falling asleep all the time and such, bless.

this is beggining to really bother me im coming to the understanding that at least where i am, it is less of a rare illness and much more a stigmatised one. i was digging around a few days before starting this thread, and in a cll this morning i found out after 3 years at my college, they are finally starting an M.E. discussion group. of which 16 other members are M.E sufferers!
These people have been wondering around the same college as me and facing the same problems alone like i have.
i have had countless meetings with college staff where i have been told i am a unique case. a student with a situation that the college has not had to deal with before. now i know that this is untrue. its less empowering and more enraging that their principal reason for giving me such a hard time was a lie.!!

Jazmine · 27-01-2009 13:40

(Original post by Addnightshade13)
this is beggining to really bother me im coming to the understanding that at least where i am, it is less of a rare illness and much more a stigmatised one. i was digging around a few days before starting this thread, and in a cll this morning i found out after 3 years at my college, they are finally starting an M.E. discussion group. of which 16 other members are M.E sufferers!
These people have been wondering around the same college as me and facing the same problems alone like i have.
i have had countless meetings with college staff where i have been told i am a unique case. a student with a situation that the college has not had to deal with before. now i know that this is untrue. its less empowering and more enraging that their principal reason for giving me such a hard time was a lie.!!

In my college, I visit the Mental Health & Disabilities department and it is so good. I won't go into it, but I'm just sorry you haven't had the support from the get go and I hope this ME discussion group is going to bring a change and understanding for yourself and others to benefit =)

I can understand your situation through my friend who had back problems, which started to really affect her studies (she had to have surgery several times, etc), she managed to pass her exams - that she could take, but her college kicked her out -- I thought that was so rude considering, it didn't help the fact that she felt very low regarding her situation. Luckily, my college took her on - even though she entered quite late - and she did well.

InArduisFouette · 27-01-2009 17:09

(Original post by Addnightshade13)
okay...where to start. it seems you are individual with a burgeoning negative reputaition on TSR,

what you'll find is the 'rep' on TSR has no actual relationship to the factual accuracy of a post , the relevance of the post the topic at hand and everything to do not upsetting certain sad little children who feel that they shall right all the wrongs i nthe world by 'negging' anyone who does hold their (delete as approrpaite) trotskyite/ stoner/ tin foil hat wearing/ ignorant townie / university league tables tell all viewpoint

who is raising the argument for M.E as being psychosomatic. Al though I disagree, for the sake of argument ( and reading some of your other posts mate you sure as hell like to argue)

you've been sucked in by the propaganda there my young friend, there is a psychosocial aspect to nearly every physical health condition , just as there are physical health aspects to many mental health conditions.

the repeated refusal of some people with M.E. to acknowledge that there may be a psychological component to their overall symptomology and disease process doesn't bode well.

hence my comment about the perception that the thread was becoming 'oh woe is me i'm so (physically) ill' ,

username165223 · 27-01-2009 18:41

(Original post by zippyRN)
what you'll find is the 'rep' on TSR has no actual relationship to the factual accuracy of a post , the relevance of the post the topic at hand and everything to do not upsetting certain sad little children who feel that they shall right all the wrongs i nthe world by 'negging' anyone who does hold their (delete as approrpaite) trotskyite/ stoner/ tin foil hat wearing/ ignorant townie / university league tables tell all viewpoint

you've been sucked in by the propaganda there my young friend, there is a psychosocial aspect to nearly every physical health condition , just as there are physical health aspects to many mental health conditions.

the repeated refusal of some people with M.E. to acknowledge that there may be a psychological component to their overall symptomology and disease process doesn't bode well.

hence my comment about the perception that the thread was becoming 'oh woe is me i'm so (physically) ill' ,

I'm slightly confused as to what you are trying to say. Are you saying that in your view M.E is not a "proper" illness or that you do but fed up of people just complaining that they aren't recognised as ill and it's so tough kinda thing?

Shorty1992 · 27-01-2009 19:59

I have M.E. tooooo Suckss biig time eh!

I'm struggling so much with the social side of things at school at the moment. I fell ill nearly exactly 2 years ago in year 10. Lost a couple of 'friends' who told me I was 'just tired... everyody gets tired!', etc.

So that left me with 3 friends... 2 of which have now moved to other sixth forms. I'm at the same school for sixth form that I did a few GCSEs at on a very part time basis now... & I have no lessons with that 1 'friend' left - whenever I see her, I feel too poorly to talk so it's just like 'Hi...'

Urgh, I feel like billy no mates whenever I go into school I'm going in less & less often aswell, so the problem is only getting worsee.

Any advice?

Blink. · 27-01-2009 20:11

(Original post by Addnightshade13)
has anyone else experienced the strange feeling that M.E has cause you to cease existing in the same plane of reality as all your friends.?

Yep. Sometimes feels like I'm stuck in a bubble so to speak.

(Original post by Shorty1992)
I'm struggling so much with the social side of things at school at the moment. I fell ill nearly exactly 2 years ago in year 10. Lost a couple of 'friends' who told me I was 'just tired... everyody gets tired!', etc.

So that left me with 3 friends... 2 of which have now moved to other sixth forms. I'm at the same school for sixth form that I did a few GCSEs at on a very part time basis now... & I have no lessons with that 1 'friend' left - whenever I see her, I feel too poorly to talk so it's just like 'Hi...'

Urgh, I feel like billy no mates whenever I go into school I'm going in less & less often aswell, so the problem is only getting worsee.

Any advice?

Ah sorry to hear that I went through exactly the same as you, it felt like I'd lost all my friends because of being ill.

It probably sounds daft lol, but when you say about feeling too poorly to talk, I often literally just switch off mid conversation, like my brain just stops and I can't remember what I was even talking about This is often taken the wrong way as though I'm not listening, and if I don't talk much it come across as moodiness, but I explained everything and it's taken as the 'foggies' lol.

Best thing to do is just be open about it, and just mention that you're not feeling great and that's why you haven't spoke much, tell them it's nothing personal.

As for the friends who belittle you being ill, just ignore it. They will never be able to understand it fully unless they have it at some point, and they just can't grasp that there's more to it than being sleepy.

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