Having fibromyalgia is very hard, but what makes it even worse is how alone I feel. I have family and friends, but let’s be honest they could never understand what it means to suffer with fibromyalgia. It has gotten to where I’m in a little painful shell. I would very much like to make new friends that can relate to the fibromyalgia side of my life.
I totally get how that feels, they can never understand and it seems that everyone just sees the illness and not the person underneath…
I get it too! I try so hard to keep my misery from my family and friends b/c they get tired of listening to me "whine". They offer suggestions on focusing on the positive, get outside, limit sugar... Which are their way of trying to help. What no one understands is NOTHING helps; at least from my perspective! My new way of life revolves around managing pain and depression AND trying to LOOK as normal as possible for my children's and grandchildren's sakes. I am not the same person I was before this illness and I miss her as much as, maybe more than, anyone else. Yet I get up every single day HOPEFUL that there's minimal pain, I have more energy than I know what to do with, and that the fog that seems to have taken over my life has lifted. Gentle ((hugs)) Bubby.
Oh my God Kim, your life mirrors mine. I'm actually emotional over the fact that there is someone on this earth that knows exactly how I feel. I don't have grand children yet, but I truly hope that when that blessing happens I'm able to play with them. Gentle ((hugs)) to you as well Kim. Hang in there, honestly that's all we really can do.
Kim said:
I get it too! I try so hard to keep my misery from my family and friends b/c they get tired of listening to me "whine". They offer suggestions on focusing on the positive, get outside, limit sugar... Which are their way of trying to help. What no one understands is NOTHING helps; at least from my perspective! My new way of life revolves around managing pain and depression AND trying to LOOK as normal as possible for my children's and grandchildren's sakes. I am not the same person I was before this illness and I miss her as much as, maybe more than, anyone else. Yet I get up every single day HOPEFUL that there's minimal pain, I have more energy than I know what to do with, and that the fog that seems to have taken over my life has lifted. Gentle ((hugs)) Bubby.
Hi Pamela,
I like the way you put things when you said fibromyalgia family and friends. I made the decision recently that I will express my emotions here, with people who understand. When others ask me how I'm doing I will answer "Today I have given and received love, and I have had a blessed productive day" or simly reply "I'm blessed."
PamelaJenewein said:
Hello Kim,
I agree, this new lifestyle is the pits. And the harshest of realities is that nothing is available to relieve the pain or lift the fatigue. All the solutions out there only takes the edge off pain, or knocks you out so you can sleep through it. And to me thats not a life.... thats merely existing. However, on the other side of this fence, are those whose symptoms are so severe there is no other option but to chase pill after pill after pill...
Then from my work as a Nurse Asst in Home Health, Hospice and Nursing Homes, no one likes being around sick people. Or those who have chronic disease/illness. I'm told its a reminder of their mortality. So it begs me to ask this question, "Mortality is a bad thing, how?"
All we can do now is find those who are surviving, like ourselves, and make them our new families, friends, etc. At least when we cancel an engagement or complain about pain or fatigue they'll understand.
Hang in there... (((HUGS))))
Kim said:I get it too! I try so hard to keep my misery from my family and friends b/c they get tired of listening to me "whine". They offer suggestions on focusing on the positive, get outside, limit sugar... Which are their way of trying to help. What no one understands is NOTHING helps; at least from my perspective! My new way of life revolves around managing pain and depression AND trying to LOOK as normal as possible for my children's and grandchildren's sakes. I am not the same person I was before this illness and I miss her as much as, maybe more than, anyone else. Yet I get up every single day HOPEFUL that there's minimal pain, I have more energy than I know what to do with, and that the fog that seems to have taken over my life has lifted. Gentle ((hugs)) Bubby.
Tel me about it!! I can really relate to feeling alone. My family is small and scattered. My friends...the few I have that at least try to understand what I am going through, but they have lives of their own--jobs, kids, one of my best friends is caught in that terrible part of life when you are taking care of your kids and your sick and aging parents. I feel like I have no one to talk to. I tried to make friends at a church I attended for a while, but they were all busy busy and not at all interested in someone whose energy is limited. I strike up conversations in grocery stores just to have someone to talk to. I wish I could make a friend or two who could relate and understand and have time for maybe a phone call now and then. There is a group in town that meets in the evenings to play board games, but I have a hard time getting out in the evenings. I just feel so alone!
If you or anyone else would like an email friend of even a phone friend, I would love to talk to you!!!
Kimberly