Hi all! First, let me say a big THANK YOU for adding me to the group! I have had fibro since 2011 (diagnosis anyhow) and it has been an uphill battle. I am wondering how you guys deal with feeling like you are a burden on your family.
Hey you! Way to go jumping right into a discussion!
Your question is a very good one and one I'm sure we all can relate to. I was just writing a member yesterday and brought up the same subject. My family doesn't view me as a burden though I feel like a great big one. They understand about my fibro and other conditions, some family members suffer with fibro as well.
I've been told by my family that they love me so much...I could never be a burden! They just have to do more planning where I'm concerned. I also have the aid of my best friend who is also a sufferer and understands. We see the same doctors at the clinic. She drives, I can't but we sure have a good time together and the family didn't have to make special arrangements to get me there. We also plan stay overs...I live in a house with 8 others and it can become quite stressful. I'll go over for the weekend and we craft, watch movies, just take it easy and enjoy the lack of craziness for a couple of days.
The clinic I go to also has case managers and peer support specialists that help me with services provided in my county. My case manager helps with medication costs by writing to drug companies directly to gain medications at low or no cost. Just an idea.
I know the more I plan and do for myself the less I feel like a burden. Sometimes that lands me in bed for a day or two and they're left waiting on me hand and foot and picking up my slack...kind of a vicious circle. But I try and that's all one can do.
Communication is paramount...you need to share your feelings and give them an opportunity to share theirs. You might be pleasantly surprised.
I hope this helps a little. I know how you feel...
Be sweet to yourself today. Hit me up anytime to talk...I'd be happy to :)
Always~Laurel aka Northwoods G-Ma
hi.. i have been ill for about 28 years. my loved ones especially my husband and adult daughter always put me at ease by telling me that is not my fault i became ill. so i am way over feeling like a burden or guilty.. i hope you will get over those feelings soon. when those of us are blessed and lucky to have good , loving support from our families it gets easier to deal with those such feelings.. meet me in chat sometimes. i am often checking there to see if someone wants to chat. big hugggggs to you.
love, suzie
Hi alc silverwood, welcome to the greatest board with great members. The support here is wonderful.
My family oh gees where do I start. My daughter 18 does not believe fibro to be real, her biology or science or some teacher told her it wasn’t, and honestly I have not taken the time to sit down and show her what it is, and what I go through. She knows when moms having a bad day. Most the time she says go to the doctor… And I respond I do.
My 22 year old daughter has empathy, she does not live with me, but does check in once in a while. She seems supportive, we’ve never really sat down to talk, which I need to do, since I have been getting worse the last few months with added type 2 diabetes added and neuropathy of my feet and legs are becoming worse.
My husband. Wow when do they grow up. I don’t know what to say. Rarely any empathy, never any sympathy, and if I’m not up doing dishes or cleaning up, well then neither is he. I have bought books, and sent him links to read, told him what I feel and if I’m having a bad day, I told him I’m diabetic and he buys me ding dongs. I tell him I can barely walk, he wants to go to the huge Walmart. He says things that are funny to him but hurt my feelings, like we can get a scooter cart at Walmart… Most of the time. 99% of the time. Then there’s that 1% where he offers to rub my back and neck or run me a bath! or help me into the spa! or he cleans after he cooks and makes a huge mess…
So family and fibro don’t mix real well in my house
Oh and my four year old is now freaking out if I try to nap after a 8 hour shift 
Thank you for posting this. I needed to vent I guess.
Joy
North woods gma
Wow you hit it communication. But what do you do when they are not interested and they act like if you don’t look sick your not sick. I guess I just suffer in my own misery. I don’t want to make them listen, and I sure don’t want to hear it’s all in my head.
Joy
Thanks everyone. I just wonder what happens when our loved ones feel overwhelmed with the burden of caring for someone that is sick. My husband has Crohn's disease and still works and takes of things when I can't. We have been together for 20 years. On top of the fibro I have several different maladies, including bad arthritis in my back. I have tremendous back pain and chronic pain-when I do something I do it BIG, lol! All of these things combined puts me out of whack a lot of the time. Hell, I am not so sure I know what feeling "normal" even feels like anymore.
Hi,
Very difficult subject.....it is very hard for them to understand mainly because they don't understand this condition and can't confuse your symptoms with so many other issues.
I can tell you that coming to this type of blogs can only make you understand that you are not alone. Occasionally is good that they know from other people about this condition and how different can it be for so many people.
Good luck!
Support is one reason I sought out this place! I don't mean to say that my husband or children are not supportive, but I sometimes get "you are not hurting as bad as you say" or "there are people way worse than you that work" (I am disabled). There are some that don't believe that this is a real thing (I don't mean my family members) because they can't tell you have it by looking at you, but isn't it the same concept as believing in Christ or the wind or anything else you can't see? Sometimes I just feel like some think fibro is just a cop-out and an excuse to be lazy. They don't understand that I would love to have a job again and contact with the outside world. As it is, I just sit alone for most of the day while my husband is working and my daughter is at school. It gets lonely! Its just nice to connect with someone who knows what this feels like. Here's to hoping I can make some good friends on this board!!
Joy, I understand. I think this is difficult to manage with a ten year old (just had a birthday)! I can't imagine going through this with a four year old. I have been sick most of my daughter's life. When she was 8, she asked me if all girls that grew up to be mommies got sick. That was like taking a dagger to the heart. She didn't get to know me when I could run and play like my boys did. For this reason, I often feel like I am a terrible mother to her. My husband, thank God, has been mostly supportive through all of this. He does his best to take care of me when I need it and manage his Crohn's, work and be a good father to our daughter. I worry for him because I think if he had passed me by, he would have a "normal" life. He has his days when he is grouchy, but we all do and he deals with so much that I do my best to overlook his grumpiness. I love him and our family so much, I don't want to hold any of them back in any way.
Hello ALC and welcome! I'm glad you've joined us here. It's not a pretty illness but it sure is good to have some friends to help guide us through the worst.
ALC, usually I try patience when dealing with my illness but sometimes I scream at them when they're demanding that I be who I can't be any more. But in answer to your question, it's hard dealing with feeling like I'm a burden. I guess that I try to over-compensate by trying to be cheerful to them. I mean they deserve that much and more. I always try to do what little io can still do, like washing a few dishes and cleaning up after I eat. Grocery shopping, although I think I'm probably unable to do that for them anymore.
Gosh, your question is such a hard one! I'm thinking that maybe talking to a priest or reverend, if you are religious, or even just giving some good prayers to God about these feelings. Talk to the family about it sometimes. Love the as much as you can. I KNOW that's one thing my family appreciates from me. We may not be able to do stuff physically but you would be surprised how much our mental traits, like our love, is still needed, probably now more than ever.
If none of that helps (and as I said, I know this is a tough subject,) then maybe seeing a counselor would be a good idea for you. You have every right to still feel like you are a contributing member of your family, have a place with it and are loved. You have every right to not feel burdened about supposedly being a burden.
Lots of gentle hugs and encouragement,
Pet
Joy, give them this article. It's the most recent research about fibro and the findings explain A LOT about our pain: http://www.redorbit.com/news/health/1112877149/fibromyalgia-tissue-pain-hands-feet-fatigue-061813/. They may still sniff that it's not real so continue to waive this article under their nose each time they say it. And also, suggest that they read all of the comments here. They'll soon get the picture! I do that when my family starts doubting at times or asking why I can't be fixed. They get it after a few tense minutes.
Joy, hate to say it but your daughters really do need that talk because they may well start feeling the same things in a few years time and not know what's up! Hopefully this will never be the case, but you never know and they do need to be forewarned about it. My poor son has been, I bore him with my lecture on the topic constantly.
You know what? I use those scooter carts now. I felt awful about it at first and then realized that I'd have much more energy left after using it. It helps! And I know JUST what you mean when you mention huge stores like Walmart. Target's another one. I just avoid them anymore if no cart. Target in particular seems endless inside and i feel like I'm trapped in a maze in it due to it's lousy layout.
Joy, it's the men of our generation. They don't shoulder responsibility around the house like younger men do, and thus, don't appreciate the WORK involved and how tired it could make you. I'm sure there are exceptions but that was the way they were raised back then. Younger men are much more empowered about taking responsibility for tasks at home.
If, however, your husband is doing these things to be unkind to you, that's another matter entirely and one that you might like to think about and perhaps see a counselor about.
Hugs,
Pet
You know, ALC, it seems like sooner or later those Doubting Thomases fall out of our lives, to be replaced with maybe fewer but truer friends and acquaintances. You can't force them to believe you. Either they trust you and what you're saying or they don't. And, as I said, those who do will stay with you on your journey. Those who don't...oh well, have a good life to them.
Hugs,
Pet
alc and petunia,
Thank you for your responses.
ALC… I think as my four year old gets older it will get harder for me to just lay on the bed and keep him entertained. I understand how that must have felt the things kids say
I’m glad you have your hubby’s support.
Putnia,
I think I will have a meeting with my girls and discuss some of the things that are going on. See if maybe I can get them to talk or even ask questions.
My youngest daughter 18 shows signs of fibro. But she’s also a Taurus, lol stubborn as heck.
Oh my hubby. Love him so much. I guess I should be thankful for days he does help.
Thanks for listening a being here for me.
Joy
Lovett
I agree. Why would they agree if the entire world still has no idea about it.
Joy
Well Joy, then don't give them any info. . And when you're down and can't do a thing and they want to know then...just tell them you were going to explain all of this to them back a while ago but they were 'not interested...now you are ill and not feeling up to explaining it all. Maybe when you're up and around they might want to give it another try...but not now...talking hurts.
There is also a printout somewhere here that you can give to friends and family that explains fibro. Makes a great Refrigerator Post. I wish I had the time to dig it up today but I am just leaving for the hospital, I have surgery on my hands going on.
I'll check in on you later Joy. I do know how you feel, and unfortunately I know how they feel too. We'll get it figured out.
You be sweet to yourself today! All Day!!!
PeacenLove ~ Always~Laurel aka Northwoods G-Ma