I spend more time on here than i do on FB !! every moment i have

I spend more time on  here than i do on FB !! every moment i have

Your all like a little family!

I love it here and spend more time on here than fb now as fb i find is jsut advert postings on my wall and it is very public (mine is very restricted) but you have lots of friends and family etc added and no one even talks.

since i have got into this condition and my health i unfortunately find that there has been a lot walked out of my life or distanced themselves as i was quite a party piece with my unique laugh and always extremely hyper and getting everyone to do things.

The one who encourages everyone and likes to organise get togethers.

you kinda get treat like an 'outcast' ohhh she not the same anymore and probably only hear of her illness all the time but she looks so healthy!

Only us on here fully understand what it is like and this is why ther is constant communication and support to one another yet we can laugh together as we did not know each other personally before hand so we take as we come .

There is so much more i could say but my blogs are always long and another reason i put ppl off as i taype as i talk and guess it can go on and on and be so boring lol

i would love to introduce my litttle family on here with photos etc but fibro does not have this so we can have albums of what we gt upto PLEASE FIBRO CAN YOU DO SOMETHING ..

I WILL ASK THIS Q :-)

CAZIEXXXXX

10 Replies

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  • Cazzie I love your dogs, they're so cute, I know you're not asking me anything so don't think I'm trying to reply to your question, but I think your're right about people understanding you here (mostly!), I too am like you, and don't go on facebook much apart from anyswering a message from my family, or seeing photos and videos of my grandaughter (a real sweetheart), but then I just turn it off, you're right it's not really very good at all. I probably woud'nt put photos up, I'm a bit too private, sounds silly I know, but the best of luck in your effort to get it done, gentle hugs Claire xxxxx

  • Hi claire,

    I not sure what i was doing lol maybe just putting a little point accross of what is like.

    I have lovely family (some) and others just have a cold cold attitude that says to me put up and shut up! :-( so my hubby and kids are my strength :-)

    Thank you for the compliment they are long haired white German Shepherds! i not walked them for nearly 2 yrs now i have walked with hubby but i go so far and have to come back,. I think the big one Haylo as possibly been a contribution to my neck as she is not good on lead ! her generation back ground are the same on female side. but off lead she is fantastic!

    Nothing wrong with being private!

    The only thing on the down side i guess is a lot of people like to know who they talking to. it can affect the responses you would get if donot want to show who you are..unless you mean just a private person in general and do not like disclosing your personal things to family and friends?? so sorry if i mis read that bit lol ..

    Can understand though!

    nothing is private really in my family it spreads as much as you want it private ..flows like water!

    especially when i have been there for certain ones, but because i think i have been suffering for the duration and its spreading round family members and some are concerned but jsut do not approach and ask or thinks its so serious, but at the same time it can be so very debilitating when keeping you confined to your bed now thats what i call serious side of fibro.

    They think because i still getting up and going out sorting my job etc that i am recovered and just going through phases.. it is just maneable thats all thats the difference.

    Even my mum said to me on phone well it cannot be too bad as you ok sometimes and not others so its not permanent and you can get better..i just go with flow at times as its so very difficult to explain as much as i printed info on it and tried to pass on.

    I think it is really trying to give some positive thinking lol ..

    Ohhh keep talking claire as i lovel to talk and listen to others . xxxx

  • Hi Fairycazzie I think compared to most I am very lucky, my family and close friends are all so understanding and supportive, they don't fully get everything that goes with having fibro, but they do a great job of supporting me and my needs, its such a shame when your close ones back off its hard enough for us day to day, can still plan fun things it just becomes more creative lol, its good that we have a sight like this smiles and hugs xx

  • Yeah you are so lucky ! that is what you need when got this problem. Support and understanding.

    My hubby and my youngest daughter 11yrs old silly enough are the most supportive, protective and understanding and hardly like me doing much.(they want me to stop work)

    I have older children 23 and 21 but it is not the same they see my problems when it holds me in bed!

    When i am up and about they stop everything and i just do most things.

    Not in a cruel way but i think it is relief for them when i get up and about again.

    I also have a 16yr old son ..

    Anyway best not go on and on lol as it may sound like i am favouring one!!

    They just have individual personalities thats all and all very loved.

    This site is great help when you want to know how others deal with theirs and what tried etc and maybe helping each other.

    I have 8yrs in pharmacy and i have had illnesses on off for 24yrs when i started getting diagnoses with things one by one lol. So Fibro really is the answer to why it was all happening i guess.

    huggles xxcazzie xxx

  • I find FB more enjoyable at the moment . I have a small group of Fibro friends on there and can restrict which posts people see. I have Fibro friends from all over the world and really enjoy reading about the different treatments available in different parts of the world.

    I think both here and FB have pluses and minuses but for me FB kind of works better :)

    I must admit , at one point this was the first site I logged into every day and once the problems here are sorted ( I have real problems getting the site to load ) I'll no doubt be back more regularly .

    xx

  • yes i have found a network on there that so many q's are asked and info is put on quite regular,

    I love this site as more closer network as some can be too large and not have regular contact with regular users if you get me?

    this is more family type.

    I love hearing the regulars and how they cope and what has been tried and tested and their years of experience and other ailments they have along side fm too as we all have different things and yet some are the same!

    keep in touch !! xxxxxxxxx

  • Hey there,

    I know exactly how you feel about feeling the outcast, and for people distancing themselfs away from you.

    I always log on here to see what posts there are as just like you my profile is limited and private and to be honest, people on my FB think fibro does not exsist, and I should just stop moaning for no reason....."Get a job" or "Get a partner" that should sort you out ....that stuff REALLY annoys me because not only is it making me out to be a liar about this "non exsistant illness" but it is making me out to feel like a fool too!

    I lost freiends as I wasent able to go out much and nower days all they wish to do is go out and get drunk! which is never any fun for me as I don't drink anyways!

    I have learned to just ignore it all by now, because if I take notice of everything, I will be one sad person....just liike them ! lol

    Enjoy your time on here...

    Steph..x

  • Well all i can say is those who have to be so inquisitive or opinionated then they not worth it if have to be so doubtful of what you say!!

    A migraine or other headaches and tummy troubles are invisible!!

    So if they are feeling off it ... Ohhh just say are you sure its a headache i cant see it!! ;-) how do you know what type of headache is it as there are so many!!

    End of day you have a 'true diagnosis'

    Which has eventually over history of time been given a name because so many people suffer the same thing!!!

    Why would millions of folk who never met each other fake an illness.

    We do not ask for any illness and why fake something that can cause soooo much pain, disability, stress etc. we just want to be purselves again!!

    Choice of seaside and sunshine or stuck in bed with debilitating problems!!

    I have a 11yr old who still loves fun

    I certainly know which i would pick!!

    Even if we do go enjoy some time out we suffer after for it!

    I am very lucky with hubby & kids and the fact for time being this medication is helping!! But its getting to a stage i sort wrk and thats it i nothing in me to want to do anything else.

    The bit on enjpying going out getting drunk!!

    Wow i would dance at home (that is how always keep fit)

    Plus sit ups and going put pubbing i always the most flexible liveliest one but now i know thats down to Bhms and do you think for a second i

    Want to be a bore at home!!

    I have tried so many times when feeling half decent to start dancing around and my leg gets extremely warm i feel unusually dizzy and get a wobble on and my weakness is unreal (thats how its changed) bit like a floppy rubber doll.

    The neck problems cause the dizziness.

    At moment its muscle neck spasms grrrr.

    So you take no notice!!!!

    You keep with us and like me i sit have a glass of wine and thats about me.

    Put ya feet up.

    Xxxxxhugs cazziexxx

    This is what life is now

  • Hi cazzie

    I have a supportive family, but I know that when I was really ill with Fibro, online communities (mainly the ButYouDontLookSick.com forums, sadly now gone I believe) were a real lifeline for me. People who have not had an invisible illness just can't realise understand it well usually.

    Technical stuff is not up to the FibroAction.HU team who run this community as HU provide the platform. Images can at least be added to threads here. I would recommend not posting too detailed personal photos though as this site is publicly accessible. The odd picture of your dogs is fine though - are those 2 yours? Gorgeous!

    Best wishes

    Linz

  • Hi fairycazzie,

    On behalf of the HealthUnlocked team, we are honoured that you spend more time on here than Facebook! Thanks for the feedback :)

    Cheers

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