Laying on the guilt!

I have fibro .. I have tried to keep working .. all I was doing was a little part time job of 16 hours a week .. I found all I could do was sleep all day then get up and go to my 3 hours at a time job 3 days a week .. my housework didn't get done. I swear the corners of the room nearly met in the middle the carpets wanted vacuuming so badly .. I was so tired I could have slept standing up .. There is NO WAY I can work however hard up I get .. and I am on the poverty line because of my illness .. fibro is all about muscular pain (as you well know) .. and I can sit at my computer for a couple of hours at a time .. but I might not even be feeling well enough to get myself dressed ... Somehow the monotony of just sitting and plonking away at the keys does 'mask' some of the pain and fatigue I always feel .. Try showing your husband the 'letter to normals' on the www.fibrohugs.com web page ..

I have Fibromyalgia that is in remission. I just want to encourage you that when I went back to work 7 years ago part time I thought I couldn't do it. It was the best things for me. I also found exercise helped although it was painful at first and when I learned to look outside of myself and my circumstances I began to get better. I am not trying to make you feel guilty, but it was what helped me. My husband was not helpful and very critical. We are divorced now. I guess what I am saying is reach out to other people. I want to start a support group for people in chronic pain. I would like your input. I am the webmaster for www.goodnewsnow.com. If you would like to submit articles I will post them. We don't have a budget to pay, but it would get you published.

i'm so sorry to hear your story... as your husband, i think he has to support you since he knows that you are having an illness and not making it up... he should comfort you and feel what you are feeling instead of complaining to you... nobody likes to be sick and it is not a choice... he has to understand that... please be strong and i hope you will be making money by your writing... take care and good luck... i'm so sorry that i can't do much to help you...

Oh Pat I really sympathize with you. I can't imagine being made to feel that way and know that there is nothing I can do to help it. It must be so frustrating. I know how much you miss you Dad and I do know Monday is the anniversary and they will always be hard days. He loved you so much and you found such comfort in him because he didn't criticize you. It is so comforting when you get that kind of unconditional love. I don't know what I can say to make it better. All you can do is talk to him and try to get him to understand. Too bad your mother-in-law buds in. It's none of her business. Is there anyway you could get some money from your Mom to pay off all your debt so you can start fresh?? I mean it's all going to go to you guys someday anyways right?? Sorry that's all I can suggest but you know I'm here if you want to talk. Take Care.

Sorry to hear you have fibromyalgia. Noone should have that disease. I myself have post viral cronic fatigue syndrom, or ME. I to have a lot of pain. I have to rest after getting up in the morning. I do not have the strength to take a shower every day. Doing just small things around the house causes me to have great pain. Money is a problem with us too. I have been ill for 8+ years now. Diseases like these are very hard to cope with for the sufferers, and the families as well. It is so hard to make people understand what it is like. I feel i have struggled so hard for so long for doctors, social services, homecare and family and friends to understand a little bit of what i go through. I feel so lucky that my partner is understanding. Without him i would be lost. I really hope your housband will begin to treat you differntly soon. Maybe there is somewhere he can go and meet the families of others with fibromyalgia. maybe that would make him able to understand you better - understand that making you feel bad and guilty actually may make you worse. It is after all not your fault you got sick. Hope things get better for you soon. Best wishes, and a hug

I completely sympathise. My mother often calls me, harrassing me about why I can't get a job. She doesn't understand that I often can't stand up long enough to do the washing up. She still tells me I should at least get a part-time retail job. I wish I could make her understand that it's just not possible. I'm physically incapable. Luckily, I can just tune her out when she starts off and I don't see her that often as she's not nearby. It's more difficult with someone you live with though. My partner is usually really supportive, but occasionally I think he resents me and he makes an insensitive comment. I know it's not easy for him being a carer for me, but I do my best to make sure to always thank him and let him know how grateful I am everyday that he's there. Perhaps your partner is having trouble understanding your situation. Maybe it would help if you thought about different ways to explain to him how you're feeling? Or find websites and books that can help explain? Also explain how you feel emotionally. If you're anything like me you feel constant guilt about not being able to do more. Explain that, but also tell him how you honestly can't do any more than your body is capable of, no matter how much more you'd like to. Best of luck. I hope he gets over this and it's just a temporary mood. xxxx

I also have fibromyalgia and on top of that Ebstien barr. I've had it for 5 years now and I know what you mean. If you're like me you have good days and bad days and it's hard to know when the bad days will hit and you can't so much as get up in the morning. Not that every morning isn't hard enough. I tried to work with it and it was impossible and then I almost got fired for having to take off for either my fibromyalgia or my low immune system. My husband is really supportive though. He doesn't want me to get a job outside the home and he says if I really want to then he will only let me work part time. I thought about it but I'd hate to work a job just to have to quit in no time. I have now 2 work at home businesses. One is eBay where I sell baby blankets and quilts I make myself and the other is with the wellness company Melaleuca that is Network Marketing. With both of them I have found a way to contribute to the household income and if I have a bad spell I don't have to worry about taking the time off to recover. It makes me feel good, but at the same time I sometimes feel bad that I can't do more. I use to work 3 jobs, so now what I do seems like I'm not working at all. My husband's father is the one that makes me feel guilty. He makes comments all the time because I do have a great deal of skills that can make me a lot more money if I went to work outside the home but my body can't take it and nobody seems to understand that. The businesses that I have continue to grow but a lot of people don't think that's really work and it feels like I need to show them my income so they will get off my back. Also the fact that I quite often do not get up before noon. Mornings just don't work so I get a late start, but I always get my work done. You are at least here and trying to make a little money to help out. I've learned also that my most important job is making sure the expenses are kept low. Take your free time to research the lowest cost auto insurance, internet service, phone service, and where you can shop to get the most for your money. Clip coupons that sort of thing, and you will be amazed at what you can save and that is just as good as making a paycheck. Ebay is great to sell your old things. Have yard sales whatever and if you can find odd and end jobs to do do what you can. I clean a house or two when I can for the exercise and a little money. Don't let anyone make you feel guilty, you are in enough pain already.

No my Kids have been very supportive with me since I have been sick and I am on disability, the only one that makes me feel guilty is myself. I have worked all my Life and then just like that at the age of 42 it stopped. I was bullied out of my Job 3 Years ago because of this Illness, I got so bad, my Doctor said that I will not work again. Do not let him make you feel guilty, I am suprised that you are not on Disability or anything like that though if you are not able to work anymore. It took me a year to fight for it but in the end I got it. As I requested for them to send one of their Doctors out to me as they did not seem to believe my Doctor or Consultant and they did, he said straight away that I should be getting it as I am in a bad way. I do have good Days but I do get bad Days more often then Good.

I just wanted you to know that I truly understand the pain you are in. I too have fibromyalgia. I still work full-time because I have to --I am single and have to support myself. In October, 2006 I had the worst flare up of my life. Actually, it lasted from mid-October until just after Thanksgiving. It was the first time that I considered trying to find a way to work part-time or from home. But, I also realized that my mortgage must be paid, so I kept pushing on. Now it is October 2007 and I feel the flare up coming on. I think maybe this time I year is my very worst. The pain and fatigue are year-round problems, but it gets downright unbearable in the fall. I teach, so I can't miss work for days at a time. I am so sorry that your strongest cheerleader is gone. I want to repeat him --It is NOT your fault that you got sick. Remember that! We didn't choose to have fibromyalgia. We didn't choose to get up every morning and face a day of pain and tiredness. We just want to return to a sense of normal.

I make my own guilt. I have fibromyalgia, arthritis, chronic fatigue, and hypertension. I had to quit working about eight years ago. They would not give me disability retirement, so I had to wait a couple years until I was sixty and could take regular retirement. So I do have some income now, even though I went more than a year with none. But I retired with only 17 years paid into it, so it isn't much. I'm terribly thankful that my partner doesn't make me feel guilty about not working. But I feel very frustrated that I can bring in extra money to help out. Ever now and then I think "maybe I could work a parttime clerical job." But then I have a medical crash and realize it won't work for me to commit to a permanent job even at half time. I'd love to be able to do clerical work at home on my own schedule. I ccould do work for an hour or so, then rest and come back to it. But I haven't found anything that would work for me. I do volunteer clerical work for two hours at a time once or twice a week. That's about all I can handle. If you come up with something that works, let me know.

I feel sorry for anyone who is in pain, I have a lot of pain too. I am curious to know what fibremyalgia is.

My wife also has fibromyalgia. For many years I acted like your husband. Later, I learned that I was not mad at my wife nor even at the disease but at myself. Men are programmed or taught that if something is wrong they must fix it-make more money, work harder, think smarter or whatever is required but just fix it. With fibromyalgia or any chronic condition there is nothing he or anyone can do. This is his real source of frustration and sometimes he will take it out on you. I would bet he knows he should not and feels bad afterward. I always did.

Hon, I really feel your pain. I'm so so sorry that things are so bad for you. I can't offer any advice because I don't know what its like for you guys. However, I can offer sympathy and [hugs]. Don't let your husband do this to you. He should be supportive instead of laying the guilt on you like this. Why do I have this terrible feeling that most of this is down to his mother? She cannot possibly empathize with you because fibromyalgia is one of those things that you cannot possibly know what its like unless you're a sufferer. I would try and have a talk to your husband. Tell him that you don't appreciate his lack of support and the way he makes you feel guilty for not being able to work. Your Dad was right when he told you that it's not your fault you got sick. You need to make your husband understand how you feel when he says these things to you. I'm sure you understand its just his frustration talking, but he shouldn't be taking it out on you, it's not right and it's not fair. I do hope you can come to a satisfactory conclusion to this situation soon.

I fight fibromyalgia everyday, mine is coupled with lupus. it is extremely painful and some days very hard just to get out of bed. The biggest problem I have run into regarding the times I just can't do some things is that people look at me and say, you don't look sick. Many people think you have to look a certain way and if you don't, you must not really be sick. It is a hard misconception to overcome. I do work and until recently, I worked in the operating room, a very strenuous job with heavy lifting and can be somewhat stressful. None of that is good for these diseases, but I really enjoyed my job and worked hard to get into school and graduate. Now, I work from home answering phones for alot less money than I made as a tech, but, the stress level is almost non existent. You have to do whatever is needed to take care of yourself.

i hear where you are comming from, I had family who though since I did not look sick I could not be sick and thus I was only looking for attention and nothing else. To prove them wrong and myself I tried working, I worked for 7 months for a Tech support firm through Microsoft and becasause Chronic pain is a lo like a tornado you do not know when you are going to have your good and bad days and how long they will last you can't plan a week of work like most people but you need to do it day by day. It was a struggle for me and I burned myself out and when I finally quit it took me a while to get back on my feet. See people don't see your pain and so they don't understand it. I can sit a long time in front of a computer but I also have to be moving durning that period and I also get tremors, brain fogs(which limits my bain function) and I am also not as fast as a normal person so I would be slowing the busines down. Your husband need to understand what is happening, take him to one of your doctors appointment and get the doctor to explain it to him. Give him books, open his mind to the knowlege of your condition, I have down that with my hun and he is very supportive and it has helped that he know what is happening.

hi i too have chronic pain and have not been able to work the past 4 years, but have had the pain since i was in my teens. they havent been able to dianose me with anything. i cannot stand or sit for more than 10-15 mins at a time. even when i get into bed the pain in my legs is excruciating. i do feel your pain. i hope things get better for you.

Hi patgalca, I too suffer with chronic pain from fibromyalgia and arthritis, and I can understand where you are coming from when you talk about having pain while trying to do laundry and dishes etc. I don't think people can really understand the terrible pain and fatigue that comes along with all of this. Although my husband doesn't harrass me about not working, I know that it bothers him that our finances are in such bad shape, but it's not completely all my fault either since he ended up getting a demotion a few years back that reduced his weekly income in half making our financial situation really bad. Actually I am the one who probably feels guilty because I can't work. That's gotta be difficult when your husband is laying such a guilt trip on you. One of the things that I've found is that there are days when I could have worked for awhile, but not for the whole day or everyday. I never know from day to day how I'm going to feel, and often have days where I can hardly function. I don't know many emplyers who would keep you at a job when you can't be there regularly. It is NOT your fault that you are in that situation, nor is it anyone's fault. It is just the way things worked out. As your father would have said, you didn't ask to get sick. No one does! It would be the same as me blaming my mother for passing on her arthritic genes to me. It's not something she planned or even knew would happen. All you can do is to try your best. If you really want to try working I know there are places in town, and around that pay you to do telephone surveys and questionnaires etc. and always looking for help. Places that will pay you to do computer data etc. but I couldn't tell you how often you'd have to work or what it's like. I wish I could find something I could do from home, but then there would be days when I just couldnt' cope with doing anything. Hmmm, I wonder if that would work....?? There are some people who feel that if you just get moving and get off your 'butt' and get out there that things will be ok, but they have no idea of the pain, or how stress can make it worse, or how severe or sick we can be. I know I am often sick and unable to even do housework around the house. I can go on and on about this subject. You are very fortunate that you are able to get out walking every day. I can't even do that. I need my knees replaced and the pain is like nothing I've ever experienced before. Sorry to hear that your strongest cheerleader is gone patgalca. It's really hard when you lose a parent who has been there to support you. I think that first anniversary is also a difficult one.

Sorry to hear you have fibromyalgia