Hello all.... As a fellow sufferer for 8 years I do know the range of symptoms that Fibro/ME/CFS brings. But I wonder if all the negativity and moaning on this site actually helps... Yes, it is very painful to move especially after being in bed for several hours, yes, insomnia sucks etc etc. But please wouldn't it sometimes be great to read blogs about good times, helpful health professionals, and supportive famillies. Little things that have proved positive for you, wether that be food, exercise whatever. At the moment anyone reading the blogs on this site must think they have fallen into the doomed depths of despair. Things are not easy I am not playing that down, but come on guys, we are fed, watered, have a roof over our heads and the condition is not terminal. Lets have some positive action too. I expect to be blasted by some readers, but I have also have a right to express my views.
Take care Annie.
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Lockerbielass
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It does sometimes feel that we all come on here and moan Annie, but in some ways that's a good thing. It gets it out of your system and then you can get on with the rest of the day .
Some people who post here have nobody else in their lives they can talk to who really understand ... and for some, reading that other people are suffering the same things can actually lighten the load a little and reassure them.
I think though that the one thing most of us have in common is our sense of humour, and I for one , find having a giggle on some of the threads ( especially the daft things Fibro fog causes us to do ) is a real spirit lifter !
Of course you're entitled to your say ! Nobody will deny you that
Hugs
xx
We do have positive content on here quite often see blog below "i've still got it" also we laugh at ourselves often. I don't think you can be reading those blogs, just the ones where isolated people (like me) share their struggle, get identification, suggestions and hugs.
I reckon we can do both...I think there is enough room. So far I have posted happy stuff but who knows next week I may feel like poop!! But for today I will be happy...and sore!! It is nice to read good stuff too though, so if you have just had a great time or enjoyed a wholesome chocolate cheesecake then smile and get everyone to smile with you!!!
I can see your point Annie but being newly diagnosed and having no support I find this site invaluable. I suffer with depression too and find asking for help extremely hard abd if I am honest the post I was going to put on I wont bother now,
Yes you have a right to your opinion but for me it has made me feel that all I do is moan and yes at the momnet I do but I need support from people who understand and your post has put me off saying anything now,
maybe it will have that effect on other too I hope not
If you are not happy with the site then maybe another site would be better for you
Fairylady please don't be put off posting your post on here . That's what the site is for.
I sometimes feel all I ever do on here is moan but I find the support and advice invaluable . My fiancé is supportive but as he doesn't suffer from FMS himself he will never understand the way the people on here do.
Everyone is entitled to their own opinion but that should never stop other people saying what they need to say.
i think thats afair comment okay its not terminal but it dosnt make me feel any better on bad days ,, had i not felt free to express how low i was i would be dead now as i was so close to ending it all ,, so im not at all happy that now i feel its best not to say anything xxx
I think the best thing about this forum is that we can all be honest, this illness causes alot of different problems, so its lovely to come on here and connect with those that are going through the same, they understand like no one else can,perhaps because we re not face to face we can express ourselves more, and I for one have never thought of that as being negitive at all,some on here are going through a pretty tough time, so it cant be all laughs, but others still manage to be light hearted
I do appreciate reading about everyones struggle, it does help me know i am not alone, if i wake up and hurt a lot, etc i dont always get a "nice" reply from hubby! if i tell him, so i think, this site is a godsend, for a moan,a cry or to say,
i have only just found this site an i just like reading the blogs weather they are happy or sad as i am just glad i have found others that are like me and understand, my husband does his best but bless him he cant understand what its like to have fibro, so what im trying to say is its good to be able to just say what you need to on here.
I too am fairly newly diagnosed, and coming on this site has helped me to get an understanding of the extent of the disease - it was a bit of acceptance for me - and I believe if you understand the extent of your illness you can make positive steps to managing the symptoms. I also appreciate that sometimes those symptoms will just not be managed!!! The comments people make when they are at their worst makes me feel quite lucky if I'm not! It is really helpful to hear about people often suffering the same symptoms it makes me feel less isolated with the illness. I think we have to balance the positive days with the negative and I have made positive posts when I have achieved something - however small, as only people who are fellow sufferers will know how much effort it took sometimes to achieve these things. I also appreciate the support of fellow sufferers that remind me to rest! I get so excited with progress I often overdo it - and make myself ill. I have had lots of positive support from people on this site. Everyone is entitled to their views, and everyone should feel able to share on this site without exception. Whatever it is - positive or negative. Being positive all the time is kinda unrealistic because the condition has lots of negatives to it. We should celebrate our good times (and I think people do) as well as having a good old grumble about the times we feel low and unwell.
well i have been coming on here and this site is a site for everything we vcan all moan if we wan to some people havent got the support of their family or friends and they feel the only place they can moan is on here some people are suicidle and i dont say thay lightly i have spoken to a couple of people in the early hours who have been in a bad place and by talking to them and helping them see things from a different angle pulled them out of it this site is to celebrate with other members advice for each other either given or taken
yes somedays when you are on a high you read a blog that brings you down but when that person reads your blog it lifts them thats what i finfd and of course you do have a choice the ones you read so if they start with going to moan or in pain for example dont read them mine are a mixture as are most members i do hope you keep on here and enjoy the ecectic misx of stories love diddle x
These posts are peoples lives and true feelings. So rather than looking it as negatives, may we should consider this. Like anything in life & Fibro there are brighter moments too and these are also shared. Even it seems the negative is highlighted, it just whats happening in that's persons life today.
We(those I converse with regularly) always seem to have a giggle and a chat hope they agree :).
I would always be up for a positive thought for the day or weekly catch up.
My understanding of this site is, first and foremost a place where people with fibro can share their experiences and views.
They may differ and we all may take different things from this site. Lets not let our differences over shaddow a fab site, full of great people.
diverstion .!!!!!!!!!!! . got plenty of diversion i want some damn good pain killersx
Just right Rosehip, hope you feel better soon, I sometimes hate when I moan aloud after pushing myself too far and feeling my body protesting badly and I hate when one of my grown up children ask me what's wrong with me and I have to answer, "a you know my fibro, I'm so sore and tortured with it", it embarasses me to have to moan to them, because I sort of feel they should always understand me, but they don't and they will continue to ask me what's wrong with me, but my chums here and I feel all of you are my fibro chums, wont ask me " whats wrong with you" when I moan and moan, you'll encourage me by giving me advice and I will know that you know what your'e talking about and it will make me happier, what's wrong with that!, now where is that loaf of bread?, yes I know that's someone elses joke, but I bet my fibro chums don't mind. gentle hugs xxxx
Yes your right, right now I need the space to be honest and myself that I haven't been able to do for so long with people who dont have FM, the replies I've had are so positive I'm gaining confidence in been able to question and have a bit of a moan its bringing the positiveness back.
I have an amazing, wonderful daughter and a husband who puts up with a lot and along with a bit of open space to spread my wings on this site and I hope I remember to honor them
Have just read all the responses to this blog and what I really do like and appreciate about the site is that we are not all down and moaning at the same time! When I have been down and in need of support there has always been someone here for me.Likewise when someone else is in need of support I sincerely hope that my input has been a help and a comfort to them.
In an ideal world we would all like to be full of health and vitality and able to laugh and joke all the time but the reality of fibro,or maybe just life itself, is that this does not happen. My personal feeling is that we should carry on as we have been doing, the site has a lot of supporters so it must be doing something right!!.
It has taken me a long time to accept that I have fibro as well as another long term health condition but I can honestly say that I have found it much easier to cope since I have found this site.
I reckon it does help to have a rant on here. If you are ranting on here then you are less likely to be ranting to your loved ones
I have had fibro for 14 years and after a time you feel less likely to rant, you accept your fate. Having said that there are a lot of amusing comments on a lot of blogs to make you smile. You will find yourself after a while able to laugh at yourself which can be no bad thing.
Couldn't manage without this site. No-one who doesn't have this horrible illness can understand what it's like. I only developed it six months ago on top of other conditions and have times when I hit rock bottom because I have had to make so many adjustments in my life over the last 13yrs and you wonder when it will ever stop.
the trouble with fibro is that some days are good,some bad,some bearable and some unbearable! We all feel safe to share which one of these days we are having at any given moment. I try to be positive but feel that if I am having a terrible time,I can share that as well,it is called real life!
I actually feel it is a comfort that everyone is so honest and I thank you for that. Come on,lets not have a go at each other, it is not positive! xxx
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Suffered with Fibro for 20+ years, have now found something which really, really helps.
Have you got progressively worse?
Sick of feeling this way.
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