Discussion in 'Fibromyalgia Main Forum' started by tracii, Aug 20, 2006.
From the people you need it from most? Family, friends, etc.
and i believe i never will...from family that is...
meaning like the exhb...maybe my son...
has FM also and she's now in PT for a car accident, so I don't expect a lot
from her. My husband is my ONLY other support and he tries most of the time. He too has health problems and pain issues..so we try to help each other but at times it gets hard.
I've said on here before that my mother and all of my support friends died in 1997, all of sudden and terrible reasons. I've got a best friend in Colorado and a couple of online friends..but here, noone else.
The local support group is just terrible, not their fault but it's just the way it is. I won't beat up on them but it's true.
So I rely on my pets, tv, my hobbies and online support..here and the few people I write to and that write to me..also FMers. I have to be my own
cheerleader and sometimes it's ok and sometimes it just isn't enough.
The lack of support was a total shock to me. At first, I did have support from my husband and parents and in their way, my adult children. That was when they thought I would be better in a few months.
I have been devastated and hurt so badly by the lack of support. It is really down to my husband and he is totally supportive for awhile and threatening to leave and "sick of it being all about me on other days". To his credit he has been totally financially supportive with no complaints although until now I have been drawing LTD. Emotional and physical support is what is missing.
When he is not supportive, I feel so trapped and I hate that feeling. I feel useless and a burden and that leads to thoughts that scare me.
Friends...what does that mean? I thought I knew but I must have been wrong. Surely everyone else must be right. You should not call or visit friends of 30+ years should you?
The only person that has taken care of me and really helped was a person that cleaned my house once a week and became a real friend for 3 years. She was better to me than anyone else. She helped me with so much and she understood. She just moved this week to Wyoming. I'm devastated.
I just had to tell this story.
My CFS and Fibro keep me out of work, exhausted, and often housebound. I have had it for seven years. Last year my very physically healthy father took some psych meds that didn't agree with him. He was complaining to me about how tired he felt, and I was comiserating with him. After saying I knew how awful being so tired was, he told me I couldn't possibly understand. He said he actually felt like lying down during the day or maybe taking a nap! He complained about getting disoriented while taking a walk in an area he was unfamiliar with. He went on about how disturbing it was to feel confused and tired and how I never could have experienced anything like what he went through.
Yeah, I have no idea what being exhausted and confused feels like. Lol.
I do have support from my family and I am so grateful for them. I now have one friend who I will see now on a regular basis but lost all of my other friends who said that they would have my back and they abandoned me, so I am learning that I do have full support on this site, support from God--if you believe in God or higher being.
So I am learning to be a support to myself too. It's hard to do but I can't always rely on others for support.
do for the most part.DH,DS and FIL don't think I'm faking or anything and are always after me to not overdo but they're only human and run out of patience now and then.DH may make hurtful comments or I may get teased for brainfog and that shames me but they love me I know that.My other DS and DD call but it's all about them.Friends and even Drs. get the I Don't Want To Hear It Face.Sometimes even body language lets you know to just keep it to yourself.I'm not feeling sorry for myself or whining it's just what this illness brings so it's best to realize this is the new reality.I let alot of it slide because I need to save my energy for important issues do you know what I'm saying?
Interesting question. Sometimes I feel that I am most fortunate, in that I do have an understanding sister, whom we live with, and an understanding mother, who lived with us for 2 years. My daughter's father (we never married) sometimes understands, more often he answers my "I just do not feel good today" with "you never do feel good".
My employer has been understanding and somewhat helpful. I am fortunate in that financial issues are not added to my plate. I am very blessed to have a sister who mostly understands that I have good days and bad days. I think that I have a fairly good attitude as well. On my good days, I can clean the house, go swimming, take a nice long walk, maybe go to the park with my dauther, make dinner, etc. On bad days, I have to do everything I can to make it through the day without dissolving into tears of pain, frustration, etc.
Many of my "friends" do not understand much. They get tired of me not being able to make concrete plans. Most of my newer friends (I mean in the last 10 years or so) are not too close anymore. I have a small group of friends that I would and have done anything for and they will and have done anything for me. Unfortunately, most of them do not live near us.
I also wanted to say that I have gotten a great deal of information and support from this board, as well as the arthritis board. I also wanted to say that I am fortunate in that I have very good doctors who are willing to work with me to figure out the best treatment options for me.
I used to be so active...and I miss that person.
When I want to spend time with friends (healthy or sickly) I take some pick me up potions that day just to make it thru that day. I take vitamin e, or green tea or coffee, energy bars, lecithin, or fennugreek tea. I cant take a pick up potion every single day or I'm asking for a major flare; so I choose one of these things every two or three days so that I can get a few things done at home, do errands, or visit a friend. When I visit with friends I try not to talk very much about my illness; there are so many other interesting topics. When I don't feel well and my potions don't work; I comfort myself thru prayer and rest. My mother and husband are very supportive but I try to be strategic in what I ask them to do for me so that I dont overload them.
I am very lucky I have a very caring, supportive husband. He helps out around the house, makes sure that I take it easy, and is very protective of me.
At one point my oldest son told me that he knew that fibro was not really problem, that Drs. came up with it when they could find nothing else. He has even came around. My youngest son is also very supportive. So I count myself very lucky.
don't we? I can't help but to be jealous of the few who posted that were lucky enough to have the support they need.
I could take something from what most everyone posted & it applies to my situation too. I think that's why I decided to say screw everyone-I'm getting back online & spending the time *I* need.
It is so very hurtful that those around me (especially those who mean the most) STILL haven't taken the time to even get on a search engine & research my illnesses!
Mom "doesn't have time" ~HA!
Hubby makes comments that of course are hurtful to me, I suppose I'm supposed to take it all in stride. He's online for hours after I'm in bed but not reading about my illnesses. Though I would be the first to do so if the shoe was on the other foot.
I rack my brain for what I could do for money - hubby doesn't seem to realize the severity of it all. None of my family does either(they've never really been there for me anyway).
The depression sucks & the only people who truly understand are sick also.
Feels like life has stopped while everyone goes along with their lives. I also want the "old me" back. More then anyone else does.
Think I'll pray for understanding & support tonight. Can't hurt I guess.
Am glad I can come here with "the others".
Hoping the best for everyone. ~ Tracii
Yes, I am one of the blessed ones. I have a husband who protects me and loves me and knows beyond a doubt that I am sick.
But, you know what I have learned most recently, the most important person that I need to support me is ME!! That might sound strange but after 8+ years of FMS and CFIDS I have finally accepted that I have a serious illness. I will no longer sabotage myself and push myself until I crash. I will support myself and rest and make myself and my healing a priority. That's where I am at right now.
I am truely blessed. Even though I only found out of Friday that I had FM, my DH is awesome and always has been trying to help around the house when he is here. He also always puts up with my moods. My children are still young so they are not really aware of what is going on, but my oldest who is 5 is a great helper so I am blessed there too.
My in-laws live around the corner but they are currently overseas, so as yet haven't heard that I have actually got something wrong with me, but in the past they have always helped me with the children and taken them when I have had a major migraine or something like that. I am sure they will be just as supportive when they hear what is wrong.
I also have a fantastic friend around the corner who although has her own health issues has made an effort to find out about FM herself and is trying to help me work through it and I know she will be there.
Other than that, my own family live further away but my mother and one sister know, but the rest haven't been told yet. I'm not expecting my Dad and his wife to truely understand but I don't see them that often so it doesn't really matter.
I have hidden my aches and pains from most people because I have always sort of thought it was in my head. People often have said about me looking tired but because I have young children they put it down to that, which it isn't because my kids all sleep through the night generally.
Anyway, sorry for the novel, but remember that everyone here is willing to support you Tracii. I know it doesn't help to not have that support at home, because I know how valuable it is to me.
Take care. Michelle
I just found out that fibro is probably what I have. I have had mixed reactions. I can tell my DH is trying to be supportive but until we have a definite answer, he does not want me to get too wrapped up in it. He says he'd like to think he would never say anything mean to me like: You never feel good. I hope not, I think that would crush me. My children are too young to understand a whole lot except mommy isn't feeling good. My grandmother and my aunt..the only family that speaks to me anymore...are worried. I have only told two of my friends, one who is very supportive and the other who is supportive but is one of those herbalistic, heal yourself gurus (I love that about her, but I am not willing to go to quite her extremes). I am afraid to tell too many people because I worry that they will think I just want attention, you know the poor me syndrome. I feel awful because I have a friend who has reflex sympathetic dystrophy and as supportive as I was of her I had my days where I just didn't want to hear any more complaining (so naturally I am terrified of ending up like her). I have noticed that doctors, in my area at least, treat chronic pain patients very badly. I am afraid of being treated as a "drug seeker". So like I said, I'm so new to this, just got told the probable diagnosis last week, that I have no idea what it is going to be like support wise. I am just happy I found this site right away.
or from talking to other people with fibro. I am a massage therapist and I meet a lot of people with fibro. and we usually end up talking the whole time I am giving them a massage about the dd and how it affects our bodies.
Honestly I can tell that almost no one believes me.This is the saddest feeling in the world.The people who you have taken care, of an been there for now thinks less of you.Like you can will yourseslf to better health.When they are nosy enough to ask how you are,it's only to have something to talk about with someone else.You almost know what they have been saying based on the questions they ask. They look away from you after the ask you something and give that look to someone else who does't believe you !
I have began not trusting anyone.Not one of my coworkers have ever given me the idea that they truly understand. Ruthie
I wish I did. I keep trying to educate my family, but they just don't want to take the time, or have preconcieved notions already in their head.
Most think I'm just lazy and dramatic. Which has made me hold in my pain and try to keep it to myself, further isolating me. They just can't get the concept I can't do what I used to be able to do. We are all a working class family. If you don't work, then you're lazy, just how it's viewed. So, I try to weed out the ones who really don't take a little time to understand. But they are family, so I don't want to avoid all of them forever. Just as much as possible. lol
My worst frustration is the medical community! There are so many docs that don't believe it at all, or don't believe the severity, or just plain have better things to do, don't want to waste their energy on our DD's. URRRGGGHH!
are. I'd say that as far as immediate family, my Mom and my son are most supportive. I'm not sure Dad quite gets it but he is by no means negative (just doesn't know what to do or say like most Dads). Out of all my friends, the two who are the most understanding are 1) the nurse, and 2) cancer survivor. I'm lucky to have had enough friends so that I could dump the ones that act like they don't believe or don't care. Actually, that's one good side effect of fibro - pitching all the bad applies in my basket.
I get NO support from family or friends. It's truly sad. Friends are few as they just walk away and avoid you if at all possible. Hubby thinks it's all in my head and will cut me down in front of people so that they think I'm just complaining about nothing. Oh if they only knew-perhaps they should experience this for a week- see what we go thru daily. If he only knew how much pain I'm in everyday now. The head aches,joint aches and muscle aches are constant. I try to due only what I know I can do then I feel good and overdue do it. I suffer and cry in silence wishing the pain would go away. I have just found out there is a support group in my area and will be attending the next one in the hopes that it will help a bit to know other people suffer as I do. I love to paint-that is my life saver but I can only do that for so long. If would be wonderful to know that someone cares and understands that you don't feel well and a hug once in awhile would help. I have considerable stress in my life which doesn't help one bit. To have just a tiny bit of help and understanding and compasion would effect my life for the better considerably. Thanks for listening. Hugs Beth.
[This Message was Edited on 08/21/2006]
I think this is and has been a very interesting post - let's keep it going!
It has made me jealous, angry, sad, empathetic, & inspired.
I've stayed away from the board for quite some time due to events in my life, time rescrictions, & mostly, expectation from others (you know, since I'm home all day and all (GRRRR!)).
I now know *I* have to do what *I* have to do too! Just because I an unable to go to work all day doesn't mean that I don't have important things to do too. Neglecting MY needs to do the "poop" work around the house so everyone else is happy is counterproductive all around.
Thank you everyone for posting & keep posting. Post on!
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