how much does c.f.c effect your social life?
0
not much, only have a mild case of it. - 0.0%
0
sometimes - 0.0%
0
a little bit - 0.0%
4
it effects me quite a lot - 57.1%
3
what social life? - 42.9%

 
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rik
New Member


Date Joined Mar 2005
Total Posts : 2
   Posted 3/26/2005 11:19 AM (GMT -7)   
hi everybody, i'm a 22 year old,bloke,living in cambridgeshire area who suffers from c.f.s(m.e) and this is the first time i have looked at a site about it and im very pleased to learn that other people are going through what i go through.
   i got diagnossed with m.e about 7 years ago but then seemed to clear up, i finished school went to work and after a year became very ill with m.e.
   since then ive had ups and downs with my body and my mind, recently though i have had a major down in the way i'm feeling with it all. For about the last 4 months i have been pritty much bed ridden and left feeling very tired with aches and pains all the time,i have however tried to keep mentaly strong hoping for it to one day go away, but so far no such luck and i'm beginning to lose faith.
      Recently i have found it hard to comunicate with people such as friends and family.
        I have lost a lot of friends over it recently due to me not being much fun anymore because of it. i find myself not going out at all anymore because i am just too tired rather than before i would make a little effort not to complain all the time to friends, but i am finding it hard right now to keep friends because i moan so much to them about my aches and tiredness that i don't blame them for not coming to see me.
   i feel except from my mother who is supportive that i have no-one who understands the way i feel everyday completly drained and am writing this to urge others who are in the same predicament to reply or get in contact if it's getting you down to
    thanks for hearing me ramble on rik  rikismyname@aol.com
 

linc
Regular Member


Date Joined Mar 2005
Total Posts : 47
   Posted 3/26/2005 11:46 PM (GMT -7)   
Hello rik.

I'm sorry that you find yourself in the same stewpot as the rest of us here! It's not easy for sure, and yes... our friends do start to fall away
when we start to back out of doing the things we used to without even giving it another thought. Especially hard at your age, when life should
be just beginning in some new adventure or another. AND... most especially difficult when you're male.

The world is not as tolerant of the guys with this dreaded stuff. Afterall... you don't LOOK SICK, eh? Well, not most of the time anyway.
And it's hard for them to grasp. but then... any invisible disorder is hard to come to grips with, even for those who HAVE IT!!

Don't lose heart. Some days the struggle is going to seem endless. But there will be a smattering of fairly good days interspersed here & there
as well. Take each one of those and run w/it !!! Enjoy it to the fullest.

The things you can do for yourself are, take extra care of yourself... try to the best of your ability to keep in shape.
Say no. Not going beyond our limitations is so important to our overall health. Try to educate your friends by pointing them to web sites,
copying reliable literature to give them, etc...
Build an online support group to help you through the really rough things. They are the ones who fully do understand and can empathize
with what you're going through.
and...
don't give up.

Just hang in there and know that others out there care & are pulling for ya!
Sending you all the best & hoping to see you again sometime.

Warm Regards,
linc
Courage is not having the strength to go on ... it is going on, when you no longer have the strength. - source unknown -HeartSpaces
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Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 3/29/2005 7:17 AM (GMT -7)   
Hi rik,
I think I welcomed you to the board in another thread. But so glad to meet you, and offer some of that lost friendship. I know it's not quite the same as a friend you can call on the phone, or meet for coffee.....(mm-mm-mmmmmmm, coffee!)(maybe if we both kind of meditate on coffee....LOL!). But it IS better than none ;-)

What you have experienced with the disappearance of friends, and even family, is sadly, tragically, very common. It's a test of even the best of friendships / relationships. I've attended several support groups over the years I've been sick (for more on support groups, read on). Sometimes I've found groups specifically for CFS, and other times I've participated in groups for disability by any cause. And it seems that any serious, long-term illness can cause friends and family to "drift" away. I've even heard people with cancer report that friends have withdrawn from the friednship. But I think with CFS and related illness, it IS more severe, and my guess would be because it is not recognized by the community as a serious illness.

This phenomenon is something I have pondered deeply and seriously, because it is so contrary to everything one might expect or believe, or to how one might describe as or even define friendship and/or love. To me, it just doesn't make sense! It's illogical, it's unbelievable! But in all my attention to the matter, I still haven't come to any really satisfying explanations or conclusions. [slowly shaking head] It is certainly a sad commentary on modern humanity. ....unless....well...nah, I don't know...
SIGH!!!

Well, it sounds like linc has covered just about everything else I would want to say, so I won't repeat it. But just a question. One thing that has been popular here in the US, is "support groups", more specifically "self-help support groups", which are essentially meetings for people who have whatever specific type of problem, health or otherwise, where they go to discuss the problem, and to offer each other support in living with whatever the problem is. If you have anything like that (in your community), it would be a good place to meet others who have CFS (ME), and to begin making friendships of those who know what's it like, and can be flexible with planning, and etc. But I've never had a clear understanding whether there exists such a thing in the UK.

Oh btw, there is someone on the Fibromyalgia (FMS) board here at HW, username "siofra" who is looking for others in UK who have FMS. Some research indicates FMS and CFS (ME) may actually be the same illness. They are very similar. Anyway, just thought I'd mention it in case you you might find it helpful.

Well, good luck. Remember we are here for you, just as close as the internet! Take good care.
Brynn
 
*Co-Moderator for Chronic Pain forums
*Moderator for Chronic Fatigue forums
*Temporary Co-Moderator for Fibromyalgia forums


agnesgo
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 9/26/2008 4:02 AM (GMT -7)   
Hi rik,love to have you as an email bubby,so we can support each other love agnea 41 xx
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