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Hi im new

Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
Hi Everyone Out there
Ive been a lurker here on the boards for a few months now, and finaly decided to come out my corner and start Joining in! I wasnt sure where to introduce myself, so since I have Health probs I choose here. Im just 24, F, from Scotland and I have M.E
Iam pretty much disabled by it compared to how i was before, im not able to work or lead much of a normal life. Ive lost my social life and most of my friends to this. Ive had m.e scince i was 17 and at times i feel my life halted there. I find it hard to relate to my peers as I have gone off track and not done all the things like Uni or college, relationships, jobs, and im still living at home!! pretty depressing eh? The internet has become my lifeline over the last few years. I have made many friends online and found some good support groups for m.E, but what im looking for is a place where i can be around other young people and keep in touch with whats going on out there! Ive had alot to deal with the past year which has been keeping me more down than usual. I like to help where I can so im looking fw to joining in!
Takecare

JGeee

Comments

  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hey, nice not quite meeting you <IMG SRC="smile.gif" border="0" ALT="icon">
    Welcome to TheSite, hope you stick around.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hi there JGeeee, welcome to theSite <IMG SRC="smile.gif" border="0" ALT="icon">

    Sounds like you've had it tough over the last few years. It's good to hear that you have found support groups online, which undoubtedly help you with your ME.

    The brilliant thing about these boards is that you can post pretty much anything, really personal stuff, without being embarassed so if you want to get things off your chest go right ahead.

    Hope you stick around <IMG SRC="cool.gif" border="0" ALT="icon">
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Aw honey, welcome along. I'm brand new here too and I'd give this place a glowing reference. It's a real pleasure to be posting here and to have such lovely people posting around you!

    Thought I'd mention that I have total sympathy for you as an M.E. sufferer. It can be a widely unrecognised disease which is often overlooked. Although it can be massively debilitating at worst, there's no reason why you can't have lots of friends who support you, and here's a damn good place to find them. There's much more to life than drinking down the pub, and if you've lost friends before then they just haven't been adult enough to realise that.

    My mum suffered from ME for a long time, and it left her bedridden. She couldn't do anything for about 3 years. It was a terrible period, especially for her because she's such an independent person and to be so brutally cut down by the disease was incredibly depressing. But she also remained positive. Now she's back at work full-time (although she's teaching learning support in schools on a one-on-one basis instead of teaching a full class) and she still tires very easily but not nearly to the same extent.

    I'm not saying "hey, don't worry about it - you'll be fine", although I'm sure there will come a time when you can truly be yourself again. All I mean is that my mum feels and is younger now than she ever was, and thinks of it as being given another chance at things. She doesn't waste a minute lying down when she could be up and about.

    You've got it all to look forward to, luvvie. To be honest, I certainly hardly remember my years from 17-now (I'm 23). But I understand what you're dealing with, and am here for a chat whenever you need it.

    Lots of love xx <IMG SRC="smile.gif" border="0" ALT="icon">
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Thanks for the warm welcome! Nice to meet you, Miss quoted, Kentish and Sconebeast.
    <IMG SRC="smile.gif" border="0" ALT="icon">
    SconeBeast Thats GREAT to hear that your mum has made enough of a recovery to return to work. It must have been a hard time for you and your family to go thru. I know its hard on my family at times. In the early years It took some time for them to accept and understand that Although I look pretty healthy on the outside,inside its a diffrent story. Now they understand much better and that helps me ALOT, takes the pressure off.

    Its inspiring to hear when others do make a recovery, as many dont. With lots of flexible planing and rest before and after I am able to some things, I just try not to do over do any one activity.
    Im just needing some normalization LOL (whatever normal is) if that makes sense.
    Have a good day!

    JGeeee
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hey, JGeee, i have complete sympathy for you, being a fellow M.E sufferer, i know exactly how you feel. I only joined the boards after i had started to recover, but i know how isolated you feel. There are some good support groups etc, for M.E out there, but you're right - it's not much of a substitute for a 'real' social life. What are you doing to help your M.E, just out of interest. I was lucky, i didn't get it badly, i was only bed-ridden for about 3 months, but i still get tired and achey. Feel free to PM me, or e-mail me if you want to chat, hope you have a good day soon, S. x
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hi there!
    I'm Sel, 18, from North Wales.
    I'm sorry to hear about you losing your social life, if it's any consolation, I've almost lost mine too, due to depression.
    But you'll make friends here, you've made one already <IMG SRC="smile.gif" border="0" ALT="icon">
    My msn is captain_spanner@hotmail.com maybe we can chat some time <IMG SRC="smile.gif" border="0" ALT="icon">
    Take care.
    Sel
    xx
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hi JGeeee..have fun here and stick around <IMG SRC="smile.gif" border="0" ALT="icon"> We don't bite- well I don't!
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hiya Punkinlondon, liberty and katy thanks for the welcome! <IMG SRC="smile.gif" border="0" ALT="icon">

    P.S what does the stars mean under the user name?
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hi Punkinlondon
    That is great that you have made a recovery!
    How long has it been?
    Sounds like you had it pretty bad if you were bedridden for 3 months. I know it affects every one diffrently and i really think its just luck if you recover. Ive had a few bad phases i can think of where i was more or less bed ridden for about 3 or 4 weeks at a time. with out doubt the worst time ive had was when I had bad flu (2 years ago) and it took me a year and half to get back to where i was before it, it left me with some neurological problems. So over last summer ended up in hospt getting tests to outrule M.S or a brain tumor <IMG SRC="tongue.gif" border="0" ALT="icon">
    But genraly on a good day I have about 4 good hours, then will need to go to bed, if i dont rest when i start to feel tired then things go downhill quickly and i feel ill (flulike and drunklike without the good feeling|)
    Things Ive tryed are : Aloe vera gel drink ,suppose to be great detox.
    Varuious vits and 'pickme up OTC remeides.
    I saw a homoepathic dr regualry untill recently where everyone that had been reciving tretament for a year or more was discharged to make room for a NHS 10 year waiting list.
    <IMG SRC="rolleyes.gif" border="0" ALT="icon">
    umm, I take pain killers when i really cant stand the pain, and ive just come off a course of anxienty meds for anxiety and sleep disturbed sleep.
    like to have a beer or 2 to unwind but my alcohol tolernce has become senstive with the M.E , i cant no longer tolerate spirits, and a good Joint helps the most <IMG SRC="wink.gif" border="0" ALT="icon"> but thats a once in a while treat only as ive lost my contacts <IMG SRC="frown.gif" border="0" ALT="icon">

    what about you? what did you do to help?
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hi sel
    sorry you suffer from Depression, I know how much it bites. How are you doing with it? Do you take any medication for it?

    I have msn too , my name is whatda_hell_ami_doing_herelol@hotmail.com
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    My doctor put me on anti-depressants (tricyclic ones) because it's a vicious circle - you get depressed cos you've got M.E and your M.E gets worse because you're depressed. I was on vitamins, etc, and we also did a lot of research into it, my uncle who has organophosphate poisoning, which is very similar, gave us some info, and i cut out sweeteners, caffine and flouride from my diet, and i got much better within a week. I'm ok now, i'm at 6th form taking three a'levels, which i'm lucky about cos it screwed up my GCSEs, i still get tired, nap in the afternoon, etc. I forget that i can't do as much as my mates still, and i've had a really bad week <IMG SRC="frown.gif" border="0" ALT="icon"> recovering from having a few late nights over half term. My alcohol and drug tolerance went WAY down too, and now i've found drinking makes me feel sick, which is fun. I had it badly (ie, off school, in bed most of the day) for about 6 months, then i went back to school part time for 5 months, and now i'm there full time, but i don't have a full day, if you see what i mean <IMG SRC="smile.gif" border="0" ALT="icon">
    The stars are how many posts you've made... Once you get to 100, you get four and it goes up later on.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    M.E stands for Myalgic Encephalomyelitis. It is also known as CFS (chronic fatiuge Syndrome) or CFIDS (Chronic fatuige immune dysfunction Syndrome)

    General Understanding of it is poor, they arent exactly sure what causes it or how to cure it. Basicaly its like having flu 24/7 on and off and you dont know how u will feel one moment to the next.

    In my case I came down with 'bad flu' and never really recovered. I kept getting viral infections,colds,fevers,swollen glands and was extremely tired all the time. I had lots of blood tests done and was tested a few times for Glandualr fever but they found nothing. After a year of being like this i was told it was a post viral thing, and i was reffered to some speicalists. Eventualy i was diagoinosed with having M.E and IBS (irritable bowel syndrome). Now its nearly 7 years and in that time ive had 1 remission that lasted for 4 months or so, but Gradualy for me it has got worse over the time.

    here is a site that has some info on it
    null

    I hope this helps explain it.
    If you have any other questions feel free to ask!

    JGeee
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    You may find this useful: http://www.netdoctor.co.uk/special_reports/depression/cfs.htm
    <IMG SRC="smile.gif" border="0" ALT="icon">
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