Newbee to this board - never posted before - usually just read other posts for info and strength. Diagnosed with Fibro and CFS 12 years ago. Recently diagnosed with carpal tunnel both wrists and awaiting surgery as well as severe degenerative disk disease in my neck. Fortunate enough to be receiving Disability benefits - Married 35 years - 2 sons, 31 and 25 - raising 12 year old granddaughter and 2 dogs.
Having a really tough time right now and feeling like no one cares - I think my family, friends and even my doctor are as sick and tired of me being sick and tired as I am. No one wants to hear it anymore or they just carry on like it doesn't exist.
My granddaughter gets angry and upset with me when I can't do something she wants to do and recently told members of the family that I always use Fibro as an excuse.
My husband thinks he is supportive and says he understands but he doesn't help out with any chores, gets frustrated with my fibro fog and forgetfullness and acts like he's dying if he doesn't feel well. Yesterday he came home from work with a headache and upset stomach - of course I catered to him and did everything I could to make him comfortable. At 7:30 he said he was going to bed and asked if we had any tums - I told him they were on the kitchen counter and asked if he would take them with him and put them away in the medicine cabinet in the bathroom, which is right beside our bedroom, on his way to bed. He stood at the counter trying to open the package of tums, getting upset and complaining under his breath - I was sitting down in the living room. When I finally asked him if he needed help he snapped at me and commented sarcastically "Well that would be nice - I'm so exhausted and feel so lousy - I just want to go to bed - You have no idea how this feels."
Well, needless to say it took every ounce of strength I had not to respond the way I wanted to. I was so angry and hurt that all I could think was that I hoped he did feel really lousy and that quite frankly, I just didn't care.
What is happening to me? This isn't the first time I have felt this way and somehow I don't think it will be the last. Has anyone else experienced a loss of empathy and compassion for others? This illness might not be fatal but it sure changes people and destroys families.
It sounds like you are getting depressed, and I'm not surprised. Chronic pain can wear even the strongest person down and you have delt with alot in 12 years. I think I can make some suggestions for you and I am willing to talk to you and let you know that someone does care. Where are you located? Maybe you should look to see if there are some support groups in your area. It always helps to talk to people that are experiencing the same kind of things cause they understand what you are going through.
I also think alot if it is from depression but I have to think you're probably already on antidepressant cause its such a big part of FM but sometimes u need more than one or even 2. This is only the second time I'm writing to anyone. Infact I could have written your whole post! Its exactly my story too... I believe the pain and exhaustion just is too much to bare especially quietly. I have FM and all the sides that go with it and IC and many heriated disc's . I am on permanent disability but my husband NEVER stops complaining about me lying on the bed so often but most days I hardly have the strength to breathe..
Maybe by hearing someone else much like yourself complaining or just telling the truth can help, I know when I saw your post I seemed to feel relief!
welcome to the boards. in the begining i talked about how i felt often too. put my family in the same chaos and the stupid game of who hurts worst. my ex is type 1 diabetic, not controlled on purpose.
like you i got sick of talking about it so i stopped. a normal conversation with my doc goes something like this, hi m, how are you today. me, ssdd. laughter and on to why i am there this time. we know i hurt, we know i am tired, we know all that junk so why go over every time, ya know? family conversations. how are you m? me,better than dead and happy to be alive. chores in my home are assigned and we all do the same things. i do the bathroom and my room and kitchen counters. my brother does everything else. shopping, dishes, cooking, all of it. he realized if he wanted to eat he would have to learn to cook so i taught him.
for me i realized i lead the orchestra that is my life. the people, the problems, the joys. all of my kids, 8 of them and grand kids, 15 of those know the rules and always ask if i am up for a visit with or without kids.
i am a happy person, always have been. i will not let any illness change that aspect of me cause i like that part of me a lot.
i do not talk about my health much to family. just the highlights if needed. it's my body so i chose who knows what. giggle.
i sense anger and frustration more than i sense depression. tho i may be wrong. giggle. it's your body and only you know what you feel. sending you a big hunk of my joy. may it blow like a fresh breeze thru your mind and heart.
oh, and kids are kids. they don't get it so we have to cut them some slack. maybe next time laugh and say yea it sure does seem that way, doesn't it. what a bummer for you kiddo. change the mood and the attitude usually follows.
Last edited by bluelakelady; 06-21-2012 at 06:47 AM.
I am totally relating to what you're saying. The night after a foot surgery, my husband( now ex-) got so angry at me for waking him up because I had vomited and wanted him to get me some crackers. When I called him on it he said he'ld had such a hard day! Well to me your husband's complaining sounds like marriage -- mine anyways. It's an old cliche' what a "baby" the other person in the marriage is. (Hey being alone isn't a walk in the park either.)
I have no family in town, and I guess it would be better to be near them and be complaining about them than to be far away. When you push and achieve, people think you don't seem all that sick. Then comes a bad period, and they can't wrap their brains around it. Maybe it's clear to people that our depression is somehow wrapped up in it and they mistake the cart for the horse.
I'm considering leaving my husband of 38 years-42 together total, but I've thought to do it several times before! I don't know what I'm afraid of. He complains and belittle's me almost daily. His big thing is that he knows people "like me" and they work and cook everyday... ***, he still doesn't under but then he does have some mental problem. I was just wondering if u think u made the right choice in divorcing? I no u said it was no walk in the park but do u feel better about yourself and has your health improved any?
Well I had been complaining about feeling like i needed oxygen for a long time, tho I wasn't short of breath. Docs ignored me so went to a new one. Found out it's something called hyperinflated lungs. Air sacs don't empty out the old carbon dioxide, cause they've lost elasticity to return to smaller position. So that plus a little heart valve regurgitation, and No, I am not better.
I am no where near family, and we moved around following his career for 20 yrs, so right now I'm pretty lonely. I cannot imagine the complaining he would have done about my breatheing problems. I also endured the belittling remarks, which I in no way deserved. I pushed myself so much, and he used every accomplishment against me in court. He has something called agitated depression, and his medicine can't change a lifetime of selfishness. I cannot imagine going into old age with him. He is not the person you want to lean on, because he so resents it that I'm sick, and not earning money, or need a surgery, or whatever. He'll never be happy, so I had no chance at it.
If you have the means to meet your basic needs, and if you have social support, the decision is easier. I am not happy right now at all, tho. I may be when I get it together enough to move closer to family, and if there is a way to breath easier. My unhappiness is kind of wrapped up in not being able to finish the grocery shopping, or take a walk. If I get oxygen, I will be less depressed. Let's face it, oxygen is a big deal. Dr. Appointment next week. Didn't help my emotions that divorce court last week was all in his favor. Seemed even my attorney was on his side. Nothing like having a judge act like you're a fraud.
i left my partner of 16 years. got tired of the drama and harsh words. he became abusive after i got sick.
yes life is harder but i am so happy. i feel better, have way less stress. my family is 800 miles away but only a phone call away too. they are supportive beyond what i had hoped for. three daughters live within 30 min. of me and are always there if i need them. and me for them, always.
i will remain single. for me it is easier to be alone than lonely. i am not lonely. i made friends, play in my garden and my adopted brother and i bought a house together. he is a great helper.
leaving is a choice only you can make. your life will be what you make of it, not someone else's concept of what your life should be. i love that part!
ps. i won't say the kicking out part was easy, it was not. it was worth it.
I have found that because we don't look sick or disabled, people tend to disregard our well being. Just one of the reasons, anyway!
I love my man dearly, but this in no way means that there aren't any times when I could cheerfully throttle him. When he gets to me to that level, I take off for a while and go and stay with my daughter or a close friend. That way, I am out of the conflict zone. I can relax in peace...I am not being heckled and I can take time out for myself.
I left a very abusive marriage with not one iota of my self worth intact. It was extremely difficult to leave, but it was the best thing I ever did.
Bluelakelady has some very sound advice there. Those around you need it explained to them, in no uncertain terms, the nature of your illness and following that explanation....delegation. Delegation is the key. They may not like it at first, especially if you have been running around after them like the proverbial blue assed fly for a long time, but I can assure you that when they start running out of clean clothes, are tired of eating out of tins and are fed up of tripping over the junk they don't put away, they will be more enthusiastic about helping you. It will be tough....habits are hard to break... but they will conform. If that doesn't work, well maybe then it will be time to re-assess. Being single, in many ways, is a blessing and many people rediscover themselves and are happier.
I wish you all the very best and I shall include you in my prayers.
I can't thank all of you enough for your response to my post. The kindness of strangers never ceases to amaze me. It means so much to know that you are really not alone if you have the courage to reach out. Your stories and suggestions have already given me a new perspective on what is happening in my life.
Although I think I am a little depressed, I think it is mostly frustration, anger and resentment building up. I have allowed the people in my life to treat me the way they do. I need to communicate my needs and my frustrations to my family and my doctor. My husband is not a monster - he also suffers from chronic pain in his back and had 2 surgeries years ago. He doesn't have a problem if I need to rest, or if the house is a mess, or if dinner doesn't happen - he just won't take the initiative to do anything about it. In fact, he will ask me what needs to be done around the house sometimes but he holds his back and stretches in discomfort and gets a pained look on his face at the same time as he offers. It's me who then feels guilty about giving him something to do because he does also hold down a full-time job. I need to call him on it and delegate something for both him and my granddaughter to do to help out. Need to make a weekly chore list and stick to my guns - lol.
I think what hurts the most is his impatience when I forget things or can't complete a sentence or a thought. I see it in his eyes and face and it makes me not want to even try to have a conversation with him at all. Then he asks me what's wrong! Go figure - huh.
I've often thought and almost wished that our pain was visible - bruised on the outside every place we hurt from within. I think it is very easy for people to assume and judge that if your outer shell looks okay that you're fine. I was actually thrilled when an xray showed the severe degeneration of the disks in my neck and when a nerve conduction test showed severe carpal tunnel in both wrists (I did office work for over 30 years - probably contributed to both issues). It was like I had something concrete to wave like a flag and show my family. Crazy I know but it was almost a relief.
Anyway, I greatly appreciate your support and have found strength and a new resolve through you to make some changes in my life. Will see where it leads. Take good care of yourselves!
I'm sorry about your lung problem but now that u have an answer hopefully u will get the help u need. Also u are so lucky to have a good man! From what I've seen and heard from all the people I know its not easy to have the right partner. Ive never left before so he doesn't really know what its like to have to fend for himself . Although we have been separated a few times when I had NO other choice because of his stupidity with money and jobs but he always stay with his mommy so he had it even easier although he did seem to suffer and be very, very sorry. The big picture never really changed. I get SSI and worked a couple part time jobs just to force myself out of bed and the house. I thought I was bad back then, that was nothing compared to how I am ñow... I seem to have trouble breathing too all the time especially in the shower and in humid weather. But I guess my biggest problem is making and keeping appointments maybe I don't want to know anymore? I got myself to the pain Dr.the other day cause I was almost totally out of medications and I like to have a few different kinds so I never get too used to or immune to any one drugs. I've been taking pain medication on and off since the mid 80's when I was treated for the first 2 heriated disc'.
Hello! Welcome to the Board even though you've been here before
He sounds sooo much like my husband. He can be in bed for 3 days & acts like he'd dying. But I'm not aloud to stay in bed & when I'm on the couch he makes hurtful comments. I asked him not long ago why he's able to hide in the room & rest but I have to take care of kids, house, ect no matter hi sick I am. He says that I never feel good so it's different. I don't complain but I will say I've had a bad day, I have a headache, really hurt, ect. I make a comment & that's it. If I say I'm just exhausted he'll say "me too". Then he'll go on & on because I couldn't possibly be as tired as him.
Unfortunetly, our loved ones that are supposed to be the most supportive can hurt us the most.
I do think you need to bring both of them to see your doctor. It doesn't always help but worth a shot...
I seem to have some trouble navigating this site and where to reply! I already kinda replied to both messages I received in one butbi fir want to say that I don't think your being too hard on them and I think u are right about delicating chores . I believe it could make everything easier for everyone. Also I had to say that I agree with everything u say...people always say I look fine,even that I look great and very young fir my age. Which I like and don't at the same time cause they don't know that it took me more than 1 & 1/2 hours to get myself together and out the door and I've always like to look good and now that I only get out a few times a month I look forward to getting dressed and putting on makeup and some jewerly. I put everything together a day or so a head of time cause I know when that day comes its gonna feel like it's impossible to even get out of bed and in the shower. Infact I've missed a few important things with my family but it just seemed easiest to just stay in bed.
Gunner are u planning on having surgery for your carpal tunnel? I know a couple people who had it and they said they should never had it done that their was o.ly a small relief if that pain but incurred a different pain just tron the surgery. I know cause I have it in both wrists too! Infact it was one of the first things that showed up on that nerve test, I remember that Dr saying it was the worst she had seen and I remember being livid that I was crippled in pain with then, I believe 4 or5 heriated discs and only my wrist showed damage! Well that's life!
I've asked my husband to go to the doctors with me many time's, he won't ...he did take me when I had to go FOR SSI and I know he knows, I guess he just doesn't want to accept the fact that I have these disease's and conditions.
why is your husband so sickly and in bed so much? Atleast I don't really have to deal with that, he does need alot of sleep but that's fine with me! He sleeps in "his chair" for a couple - few hours then goes to bed.
Lol you're nicer than me, I'd make him go. I make mine go but he seems to only listen to what he wants & will even twist doctors words around. The last time he was convinced that the dr said exercise will cure fibro. The dr actually said it helps fibro...
My husband is one of those that if he has a cold or flu he acts like he's dying. When he has a cold or flu he always goes to the doctor to get cough syrup or antibiotics. I used to try to get him to let his body fight it off so he can strengthen his immune system but nope... When the kids or I are sick we fight it off unless we have to go to the doctor. Kids are rarely ever sick. Maybe once a year...
I don't baby him. I might bring him something if he asks. He rarely seems to care hi I'm feeling so why should I care? I used to try to baby him but all it did us make me bitter because sympathy is never returned when needed.