Family and Friends???

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MsLouise
Regular Member


Date Joined May 2015
Total Posts : 55
   Posted 5/3/2015 3:45 PM (GMT -6)   
Hi all,

I am new to this board, I have FMS, severe CFS, as well as several painful pelvic/gyno conditions. For me, although I am in terrible pain most of the time, the fatigue is far more debilitating, and has pretty much stopped me from living my life. I was wondering how this has affecting others relationships with family and friends? Have you received support, or no? Prior to the FM & CFS, I was still able to do a lot with family and friends. I had a very close knit group of a few friends, and several other friends that I saw often. Then, gradually, I was able to do less and less, and as I had to cancel plans more and more over the years, I feel like I have lost most of my family and friends. A few are supportive when I do hear from them, but that isn't too often. I feel like of none of them really understand what I am really dealing with, how crippling the fatigue is, and how REAL it is.

I have a couple of acquaintances that have other health problems, ones that are far more well known, and I seem them get all this support. They have gofundme pages and facebook groups dedicated to helping them, and all this support. But in my case, and others like me, I see none of this. Don't get me wrong, I want them to have that support, its not at all about that. But I am no less sick, and my life has been no less affected than some of these people, in fact, worse than many of them. I don't need all that, but some supportive words every so often would be lovely. I just don't understand the lack of understanding and support for people like us. It's really frustrating.

I'm just wondering what the rest of you have experienced in regards to this, and how do you deal with it? Have you been able to get across to your family and/or friends what you are dealing with, and if so how???

Thanks for any input, I am really struggling with this. It feels like a real loss.

Louise

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 5/3/2015 4:58 PM (GMT -6)   
You sound just like I feel. Exactly. Trying for five yrs now n no one seems to get it. Would love some support, an encouraging word, ideas on help....anything. I just worse n then more depressed . Maybe start our own support group on fb? Dont no if i can say that, but as I said...its hard when no one gets ur suffering.
Sherry

fibro, chronic fatigue, rls, ibs, depression, insomnia, and celiac.

MsLouise
Regular Member


Date Joined May 2015
Total Posts : 55
   Posted 5/3/2015 5:17 PM (GMT -6)   
I've thought of the exact same thing...starting something on FB. I was thinking specificially for CFS, FMS & multiple chronic pain conditions. Besides the lack of understanding about CFS and FMS themselves, I think there are a unique set of challenges when you have multiple conditions, which most of us seem to do. There is just no resource for this out there. There's lots for the individual conditions, but not for all of them. Let me know if you're interested in working together on something like that!

Louise

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 5/3/2015 10:05 PM (GMT -6)   
I am interested but don't quite know how to start it ? Do you? If not , I can ask my daughter! Just let me know. I really think we could help each other!!
Sherry

fibro, chronic fatigue, rls, ibs, depression, insomnia, and celiac.

AnnaBananna
Veteran Member


Date Joined Jun 2013
Total Posts : 789
   Posted 5/4/2015 5:04 PM (GMT -6)   
I've seen some pretty active fibro FBs which always surprised me since....fibro. Haha I would 'like' your group! You could call it 'We're Screwed'. Tee hee!

My husband had some friends over a few weeks ago and mentioned that May is fibro month (or maybe last month?) and that 'we' should get something started and turn it into a Breast Cancer Awareness level of group. And I started laughing and had to remind him 'dude....we have FIBRO. If we had any energy to do that, we would probably start by at least getting our housework done, let alone fundraise. Don't get crazy.' But he is right. We need some energetic allies. Maybe we should partner up with an OCD or ADHD group and just be there to help keep them on track. (I'm kidding....maybe)

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 5/4/2015 6:15 PM (GMT -6)   
I think we should start one on fb with fibro n cfs! What do u guys think?
Sherry

fibro, chronic fatigue, rls, ibs, depression, insomnia, and celiac.

MsLouise
Regular Member


Date Joined May 2015
Total Posts : 55
   Posted 5/8/2015 12:19 PM (GMT -6)   
LOL Anna Bannana, I love you're idea! "We're Screwed" is perfect!

I've been trying to think of some term that would cover having multiple conditions, including Fibro, CFS, and Chronic Pain. Sherry, my email is on my profile, if you want to email me we can start bouncing ideas around? And of course anyone else who wants to contribute!

I just started a blog about all this as well, the link is on my profile too. Not sure if we are allowed to post links to our blogs, etc here.

Louise

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 5/9/2015 7:13 PM (GMT -6)   
I wrote a long note on your blog but it disappeared. Tired out now so will try another day. This fatigue is something else. Can't believe more haven't wrote on here. Finally..someone like me?...broken.
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