I dont even know where to start. I have come on here to post more than a dozen times, and become so frustrated and mixed up, I erase everything and stay alone in my stuff.
at the moment im fighting through my physical symptoms. If im around anyone I put my face on
Hoping they can see some normalcy. I want to be normal and it exhausts me to try. I have to keep that part going or no one will talk to me or want to be around.
I dont have the support that a lot of you have.
I have been everyones rock for most of my life. I helped in anyway imaginable. I am not able to be there like I was anymore. I have to sit back and worry about everyone because I cant help them.
Husband- is unpredictable. Fine one minute and not the next. Will never reach out to help or offer anything. He just doesnt have it in him.... if he would only know what it would mean to mean to me.
My daughter loves me but she thinks that if I took more medicine I wouldnt be in pain and I would be normal. No matter how many times I have explained things she wont hear me.
My son doesnt acknowledge any of it and thats that.
I have no car at this time, my daughter just moved out, my husbands business takes all his time and he expects a lot out of me. I am not able to do it all no matter how much I try.
Sometimes having people around us who don't really understand is worse than just being alone. I live alone, so I can understand that from a different perspective. That's probably why you feel the need, sometimes, just to be alone. The energy it takes to "put on a face" to try to appear normal and healthy is draining. At least for me it is. It's self defeating too. The more we "put on" like we are normal, the less likely anyone will believe we are even suffering. I finally came to the conclusion that I don't have to feel bad about disappointing people. They will just have to learn to handle it like I have to learn to handle the pain and fatigue that I've been afflicted with.
Being house bound is hard. I hope that changes for you. Don't push yourself past your limit just to try to meet someone else's expectations. You'll burn out real bad and your pain will increase. That might be what's happening to you now.
You'll have to find ways to cut corners on all the things that have to be done. Let your husband know how much you love him but that you are unable to do manage everything at this time, and that it's making your condition worse. Maybe he'll understand and maybe he won't. Then just stay within your limit.
I have no support either, unless you count the forum members and other people who have fibro and autoimmune disease that I happen to know and they are so bad off that I hardly hear from them. I'm grateful for this forum and there are so many like us that have no one who understands. I pray each day for God to help me cope with that and other things. It helps me to find peace in the middle of all the dysfunction.
Things can turn around and get better for you, but not if you over extend yourself.
hi lisa, You sound just like i was when i first came down with Fibro , 30 years ago.everything you sais was like you were telling my story all except for the kids.i was always the Rock too and i loved helping others all the time.i got the runaround from doctors, friends and my kids were older 10 and 16 and thay both helped most of the time but they also had their lives too as i couldn't take that away from them.Hospital and hospitals till finally diagnosed in London University hosp.in london canada.its been a long rocky road and my marriage broke up after 22 years and the doctors told me that stress, perfectionist type of person and after various flu's, but i believe it was stress and perfectionist as stress flares it even worse now than it did before and its always been so painful.i have had steroid injections from head to toes and short relief so stopped them,ibs, costo chondritis,inflammation of the chest wal and rib cage and feels like a heart attack and fatigue and yes, pain from head to toe.i tried many 6 week programmes in hospitals to learn to pace yourself,relaxation,etc. i'm only a click away and please don't give up as we know what you r going thru as we all r too and everyone handles things diferently and i hope you find a kind, caring doctor as thats what you really need and the support of others would immensely at least help you to cope better at least knowing in your heart that they care and r trying to understand....please stay in touvch....soft hugs..i also have to put my face on everyday and make myself do that,no matter how hard it is as i'm used to it that way and even the little bit of energy that takes makes me feel at least a bit better as it would bother me the whole day if i didn't so stay with that part of the day and just keep doing it and you will feel better with at least that part of it and the rest of the day can wait for you.....
Dear, dear Lisa .. I hurt, too, as most of us on this forum do. But isn't it a comfort to have these new friends who understand our pain and problems related to this dreadful disease? I often feel that no one else does, not my family, not my friends. Even talking about fibro makes them uncomfortable, and I so desperately need to tell others how I feel and try to make them understand that I may look "just fine", but am hurting like hell.
I too have lost friends because I have had to change plans at the last minute because I am in too much pain to leave the house. I have tried to explain myself, but that doesn't do any good. I recently had to bow out of meeting with a group of "girls" I worked with many years ago, and instead of a comforting word I got a hurtful email from one of them telling me that "everyone has aches and pains but I should rises above it". How nice, right? I didn't even try to respond to that one, and consequently haven't heard from any of them since. I am sure that everyone here has similar stories to tell.
I have tried to explain to my husband that I so need for him to help around the house, but it does into deaf ears. He has a hard time understanding any illness, but that's a whole different story!!
I attended religious grade school, and I remember being told to "offer up" our problems. I guess that's our only resort! (I just had a good laugh over that memory!
I am new to this site and this forum, but I can see it will be a blessing that I found all of you and a comfort when I am in so much pain and discomfort. Thank you!
Ally thank you,
Your right about needing to cut corners . I really try and people and things don’t let me . Not sure how to make it stop but to get on the couch and say I can’t do it right now and deal with the resentment and frustration from them. So I’ve done this, and then feel so low because I’m not doing what I need to at that time. It’s confusing… Have my flares while trying to take care of things or have my flares because I’m dissappointing others… I am so greatful for you Ally. I will figure it out with trying to compromise. I want my family and friends to be proud of me but they have no clue what it takes for me to do what I do. I am looking forward to our new friendship. I really am. Hugs to you ! Lisa
Hi Jackie,
Oh my goodness you have been put through so much. Im so sorry for you : ( thank you for your advice. I’m getting it from an expert! : ) My husband has threatened me on many occassions that he wanted a divorce. I am 44 going to be 45 next month. I have been with him SINCE I WAS 13 years old. Ive been married 26 yrs. In the beginning of FMS ( before I knew I had it) my neck was in bad shape. I walked around with a heat rope around my neck so I could still try and get things done. He was disgusted by me because there was something wrong with my neck. That was the first time he told me he wanted a divorce. Then my lower back , ect… I don’t ever want to loose him and it would be deviating even though he’s not always good to me. He’s all I know. Jackie thank you for being there. It means a lot that you are available to talk with. I’ll stay in touch : ) hugs to you Lisa
Lisa. I am alone, completely alone so I understand where you are coming from. I fully support ally’s comment below, sometimes it is easier not having to explain your feelings to everyone and just get on with coping with the pain. I have been housebound now for three years and just pace myself to cope with the housework and try to keep my mind and to some extent body as active as possible. I to find this site very helpful even when I don’t write anything just reading how others cope and what they are going through helps.I wish you some pain free days because trying to work all this out and cope with cope is very difficult. I wish you well. barb
Honey, I say let him leave, get your share, and start over without him. He hasn’t done anything for you anyway. They all sound pretty selfish. Do I sound like I have been divorced? I have empathy for you. Sorry, just bitter memories.
Hi Karen , i also was in a private Christian grade school! Yes, Jesus is my number one guy : ) I go to him often ! Sometimes my spiritual side gets lost in all the mess but in the end I always go to him. I’m sorry who you thought were your friends would be so cruel! That’s horrible! Reminds me when I found out from my sister that my other sister told her that she thought I was faking this disease and what made it worse was that she ( was) a nurse. Really hurt to my core. She is another one that can’t stand it when someone in the family has any health issues. How many other people did she say this too ! I still can’t get past what she has done but she wouldn’t know it because I act as if I know nothing … Sisters as usual… It’s tuff. Wish I could tell her that I know what she said and what she thinks but I can’t. She is a very defensive person. I will pray that your husband will be of support and god will open his mind to understanding of this disease. Take care. Send me a message on here any time and stay in touch!!
You're welcome. You are still making others your priority and you probably always have, but now you need to make yourself a priority out of necessity. I know it's hard to see another person's disappointment, but remember they are still believing that you can do all these things. You'll have to forgive them for that since they are working on a incorrect assumption. They still see you as you were before and there will be denial on their part until they can come to accept that you now have limitations.
Learn as much as you can about things that may help lessen the symptoms such as diet, relaxation, stress reduction etc. If you pray, ask God to open your family and friends' eyes and hearts so that they can know what you are going through.
Do only as much as you can and then stop. Tomorrow is another day. I'm glad to be friends with you too. Email me anytime.
Lisa, It makes me so sad when I here how family members can make life harder instead of helping make this horrendous struggle a bit easier… You did a great job explaining ur frustration.
have you tried giving your husband the Love Letter to Normals by Claudia Marek, I have heard many have got great feedback.
I just want you to know we understand how & what you feel !!! & we are here for you !!
One day at a time
Hugs & blessings
dee
Lisa, how your plea echo's mine. I have had Fibro/chronic fatigue since around '87 but wasn't diagnosed until '06 or there abouts. So hard for me to be exact on dates and times. I have no one to be with me when I have a flare, which has happened more and more frequently these days. A single lady living with 2 cats. Like you I have always been everyone's 'rock'. So it is hard for anyone to accept me as anything else.
The people here can be your support and cheerleaders. It is so good that you have found this site.
Don’t erase, relax as much as you can and write from your heart. We won’t judge. Let it all out we will listen. We may make suggestions but we also know that what works for one of us may not work for another.
It is hard not to be the givers that we used to be. From what I have read on this site, many of us have that trait. Not being able to do everything anymore and learning to turn all the outward energy inward in order to heal does not make us “takers”. I am learning to give in different ways. When I have the energy I bake. Then I freeze it in small quantities. I love baking and used to “whip” thing up especially on weekends when my kids and grandkids drop by. I can’t whip things up anymore. My arms simply ache so badly it hurts to stir the batter. But there’s always something good in the freezer and it makes ME feel good.
This is the only place that I complain. This is where I go for support. I’ve learned that no one really wants to know. I am learning to give myself the care and comfort I need. Long hot showere, gently self-massage, special magnesium lotion, electric blanket heating the bed before I get in it. As I take better care of my self I am finding that my good days happen a bit more often and my bad days are a bit more managable.
I have learned so much from the people on ths site. Post your questions, air your concerns, vent your frustration, describe you pain. You are not alone! Each time I read a post and say “that sounds just like me!”. It gives me comfort to know my pain is real, it s not just in my head, this disease is real, but most of all I am learning how to manage it.
Thank you shaylynn,
You are handlings better than myself. I had a passion for cooking. I was going to open a resturaunt one day. I worked for my parents when I was younger in their resturaunt. I had big plans and was going to give a job to everyone that I knew need a job. I couldn’t wait for the day.
I understand about cooking from your heart and feeding those you love. It’s a way of giving of yourself.
I now have a hard time whisking eggs to make scrambled eggs. My pots and pans are quite heavy and hard for me to handle. I appreciate your encouragment to do what I have to do without remorse. I will work on it.
: ) thanks again. Hope we can talk again. Hugs to you. Lisa
Thank you Terri ,
I don’t believe we’ve talked yet. I could be wrong about that. ( go figure ) : )
I appreciate what you had to say and sharing some of yourself with me.
I hope we can continue talking . Send me a message anytime. Take care Terri . Hugs from Lisa
Thank you Barb,
I’m sorry your alone like that. It saddens me. I am alone most of the time and unfortunately
Even when someone like my hubby is home I still feel the same way but now there’s more pressure. It’s not his fault. It’s just the way it is. I try to exercise my mind also. I Play games on my phone when i lay down. I would like to put in a friend request. Thank you barb. Talk to ya soon! Hugs from Lisa
Thank you Dee,
I appreciate all your thoughtfulness. I printed that letter out a while back and decided to write things in my own words . Have not been able to do that yet but I’m hopeful that my family and friends will have a better understanding and provide me some support. I don’t want it to back fire on me, so I will pray and ask for the guidence I need to write what needs to be written. Hope you are doing ok. Talk to you soon. Hugs from Lisa : ) : )
Lisa, I have always had the reputation as the reliable, dependable one meeting everyone's needs. Then I was diagnosed with fibro in '01 Along with that I was diagnosed with depression in the mid-'80's, have been in and out of psychiatric hospitals, made a couple of suicide attempts because had nothing to live for it seemed. My children were grown and gone and I found out I was in a dysfunctional marriage and had lost my identity. Finally after learning of my husband's affair with another woman and after 35 years of marriage, we divorced. What I found out was his lover did me a favor. It forced me to face the fact that I was married to a insensitive, controlling man. I am alone now, but I was really alone in my marriage. So I have lived alone for over 4 years now. What I have learned my identity doesnt depend on some role I play that Ive established for myself. The only way I can get through each day with this illness is to live one day at a time, sometimes one hour at a time. Because how I feel can change just that fast. When I can accept how I am at any given moment is when I can be at peace. BUT acceptance is not always easy. Frustration, lonliness, isolation, especially after several bad days take their toll and depression takes hold. That's how I came upon this support group. I believe God lead me to it. A gift where I can do what Im doing right now....reaching out. I need you. You need me and there are all these sweet gracious people who care, understand, dont judge, get annoyed and tired of listening to my complaints and frustrations. My friends and family just dont get it. Sometimes I think it would b easier if I had an illness where I LOOKED sick, but because I look normal they cant "see" it, cant fix it , so I feel even more alone. It's interesting because I know people who have fibro but we cant really be there for each other too much because we dont have the energy! Please stay in touch because when you reach out it helps you and it helps me and all the others. Support groups are a wonderful thing. Youre in my prayers. Sue
I do hope that you will go see pain specialist if typing just few minutes hurts that much. I am always surprised when i go and get like a 5 or longer year check up on my pain. Now i am much more pain so it is time again.
I know...about families not understanding though i can say my husband has always been pretty good about it. He does not expect anything from me but to take care of myself. He now also has bad arthritis in his ankles ...problem is nothing will get done if one does not push themselves a bit every day.
As to my family...my older sister is only one never to see me really sick so she has not ever got how sick i can get and since i moved 4 hours away from my most family...they do not have clue about how sick i am.
My mom worries and cares but rest...out of sight out of mind.
I say take care of yourself if you can....if you cannot go get some help from a counselor who help you learn how to put your health first. I am so sorry that your children do not get it.
I think they grew up with you being sick so they just see it as your normal.....your daughter is right to some degree. Go to pain specialist if nothing else so she cannot say it anymore and than she might realize that no amount of pain medicine is going to relieve all pain. Just have to live with part of it. She most likely gets upset at how you do so much for your husband who sounds like he does not help you back.
I get that..my husband has horrible temper as well and i think i use to make excuses for him before. We lived apart for awhile and personally....in many ways i wished we still did. He makes me sicker since he will not help out and if i ask he throws temper tantrum and is done doing what i asked before his yelling has stopped.
He is just a really depressed lazy person and i uses to go out of my way to get him out enjoying life well i hurt too much now to do it so he literally will sleep all day and night all the time if did not make him take of his dog. But on other hand if it snows...he knows it makes me bad sick he will get up and do that for me. He also stacks the wood...but takes him to wait until last minute and i end up helping to get it done.
So go talk to counselor..helps seriously...to get it all out and have person get it plus give you tools to get them help you a bit . Or how to work around them.
Yea i agree about mask is tiring...when i worked i wore it..but not anymore and now i am not liked even though everyone in my family kept saying for me to stand up for myself more....i realize that meant as long as it was not them lol!!