What happened to the group where those who didn’t have support from family or friends as they struggled with FM and other health issues. I’m having a really hard time with this now.
Darn view on my phone interfered with my getting my question right. It’s just that I know there was a group where folks with such issues could share support. I could use some of that about now.
What are you struggling with?
hi Gordon.. Please let us know what you are struggling with. the support is here. all the best
HUGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGS
suzie
I'm sorry you are struggling Gordon : ( This website is a great place for support. Have you tried using the chat room? I find that this often helps me when I need to talk to people or need some additional support. I consider the wonderful individuals on here my second family as they know what we go through and truly "get it".
Hugs,
Sara
We did remove a few subgroups that had not had activity for a long time, Gordon. But you're here, we're here, so go ahead and post what is on your mind.
Hello Gordon,
Sorry to hear you are struggling at the moment. I find that if I post on this main page I get a broader range of support and good ideas. There is always someone here, and also the chat room is good. I would say that a lot of people on here have had trouble with family and friends, regarding this horrible condition. So please let us know what you are struggling with, and how you are getting on.
Take care, Anne
Hi Gordon
You can post here or the general discussion. We are here to help you.
Hi Gordon, there is a group for communicating positively with friends and family. However, many more people visit the main forum here so please feel free to post your question / situation here, we are happy to try to help. Hugs.
Gordon, sounds like you and I are in same boat. I log on and don’t always find useable advise when it comes to copies with this condition when there is no one in your life who really cares to help/ support you or even anyone to vent to. I just vent on site it helps a little. In terms of advise, all I can say is you need to put yourself first in that you live as healthy a life style you can. If your like me and are responsible for financially supporting yourself or family. Just do the best you can. One of the docs I see encouraged me to get intermittent leave meaning when j feel sick and need to take time off I can without being penalized by my employer for use of sick time. If your making in support is emotional then I don’t have any answers. If you find any please let me know. My family kinda get it. Husband understanding when its convenient for him. Definitely feel he allows himself to know what I go thru unless it impacts our financial situation or bedroom activities. Then he plays dumb. ( just a little angry). No emotional support other then my own self talk. Meaning I encourage myself and make myself ok with all this. If I can’t stay up to spend time with husband or kids I just explain it and go to bed. Only care about disappointing my kids but they are older know and more understand at times. Remember you have to be hour own advocate and manage your illness. Things can be done that will help. Diet excersize and getting ample sleep. Be well and you are not alone.
I've tried a couple of different times to write a more detailed post as to what's been going on in my home and in my heart, but it's been really hard to think about, especially in terms of trying to share that with others. But I guess the bottom line is that after a journey of about 6 years down this road of mental and physical decay, my wife has apparently "gotten over" me having a disabling condition. I mean, she's never been terribly nurturing or caring, but at least she seemed to understand something of the pain and frustration I experience, but in recent months, she seems to just flat not care, nor have any patience or tolerance for my continued struggling with pain and frustration.
The decreasing support from her is especially painful since I have very little other support from anyone. Although we’ve lived here going on 8 years, I have few friends here and none that I am especially close to. Neither of us have any family within about 1,000 miles and I don’t hear much at all from my own kids, unless there is a disaster of some kind or there is a need that it’s felt I can meet. My parents are gone and I hardly ever hear from my siblings. So, I really feel the hurt intensely with very little outlet for my pain.
The part of it that is hardest for me is the lack of emotional support. Many of you know what it's like when battling with the depressive feelings resulting from our disabilities...having the need for those you love to remind you that you're ok, that you are cared for and about, and that you just gotta keep moving forward and that they will love you and stand by you.....pretty basic needs, but so critical for our survival and so hurtful when you don’t get that....
I had one of the most heartbreaking experiences of my life recently when my wife told me she didn't feel she needed to reassure me or try to help me maintain a healthy self-image....she said I should take care of that myself, that it wasn't anything she felt she should be doing. She also told me the same thing regarding my requests for help or assistance with personal needs or with the private business I've been trying to get off the ground the last couple of years. Those things were just nothing she felt she needed to be doing.
Typically when I make some request for help, she doesn't comment at all, doesn't argue or make excuses, just pretends I never said anything at all and does nothing..... These attitudes and actions have gotten worse recently in other areas of our lives, and it seems to be part of an increasing attitude of "get over it" towards me. I sure wish that were possible to do, but instead, as additional health problems occur the pain and limited mobility worsen....and I fight to not let anger, bitterness and hopelessness overtake me.
Thanks go out to Luna01 for showing some genuine interest and offering a listening ear. She has motivated me to actually put something of my heart-pain down in writing.
That's really crappy to hear Gordon. I'm sorry your wife is treating you like that. I was in a not so bueno marriage for some time.
I don't have any support either. My siblings are busy with their own lives, my parents have their own issues and only call when there is an emergency, so it's on me to keep the contact up and with my abysmal finances, I no longer have a phone to call them. I live in the middle of no where MN, not a state I'm from. It's a long, sucky story how I got here too. I have no friends here, no family (my family is mostly in AZ), no one to talk to day after day after day. I have contact with other human beings in person maybe twice a month tops.
I let myself wallow in it for a very long time. I finally just got so utterly sick of my life that recently I decided, fine! If I'm meant to go at this alone, I'm going to prove to everyone, including myself, that I can. That was about two weeks ago. I have made some rather big strides in changing not only my daily living but in the way I think about things. I know that I will need help when I wain, which is why I joined an issue specific support group.
I personally feel joining a group of people who are going through what you are is very helpful and a great first step.
Vent away!