Laying on the guilt!

@patgalca (14236)
Orangeville, Ontario
February 24, 2007 8:09pm CST
I have fibromyalgia, a chronic pain, chronic fatigue, chronic everything illness. For the most part I have it under control because I pace myself and know my limitations. I have not worked in 11 years since having my baby and being diagnosed shortly thereafter. Obviously we are suffering financially. For the most part my husband has been very supportive, but then he gets in one of his moods. I can always tell when my husband has been talking to his mother, besides the fact that he told me he had been speaking to his mother. LOL! He called me from work last night and harangued on me about not working. "If you can sit at a computer at home 8 hours a day, you can sit at a computer at a job 8 hours a day." And, "If you sit around talking to your fibromyalgia friends about pain, then you will feel your pain. But if you keep yourself busy you will not think about your pain..." And, "You said yourself there are people who are worse off than you are." I told him they are worse off BECAUSE they work and he has no idea what the "other people" are going through. For starters, I don't talk about fibromyalgia at all except with regards to my in-town support group and the occasional time I participate on the fibromyalgia board. Also, as I told him, when I am washing dishes or folding laundry, it hurts. I am keeping busy but the pain rises and I can't help but think about it. Jerk! I can understand his frustration since we are drowning in debt and he is contantly withdrawing retirement savings money, which we get taxed on. He has no idea what my frustration is like and will never begin to understand it. It is hard to focus on my wants as opposed to my not wants when he is burying me in guilt, which solves nothing. If I could just start making money off my writing we would all be happy. I hate that we are in this situation and hate feeling like it is all my fault. Even worse, that I can do nothing to help. It doesn't help that I spend so much time on sites that pay, but take forever to build up the amount so that I am on here all day. I did get some writing done today. I'm pleased about that at least. My father never judged me, never criticized me. When I complained about what we were going through he said, "It's not your fault you got sick." Dad died a year ago Monday. My strongest cheerleader is gone. Does anyone make you feel guilty?
7 people like this
18 responses
@patootie (3593)
25 Feb 07
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 ..
3 people like this
• Canada
26 Feb 07
Sorry to hear about your situation patootie. I too am finding much the same thing. There are times when I can get up and keep moving and doing things, although those days are far and few, but I struggle to even get housework done these days, and I feel bad that things aren't getting done, but I can only do so much. Some days I can't even sit at the computer when I'm having a bad day, so how could I hold down a job? I've also had 4 doctors say I was unable to work and yet I kept getting turned down for any type of disability, meaning we too are struggling financially. It's not easy and it's not something we asked for.
1 person likes this
• United States
25 Feb 07
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.
@patgalca (14236)
• Orangeville, Ontario
25 Feb 07
I responded to your support group post. I do exercise regularly. I walk 3 miles every week day. I pull in a little cash delivering Sears catalogues but have been battling tennis elbow since the fall. My husband knows I am limited. It's just that he sees me on the computer so much he feels I should be able to do this elsewhere. I have applied for jobs but have been unable to snag one.
1 person likes this
@patootie (3593)
25 Feb 07
Blimey .. you do very well to walk that far .. I have fibro and I can only walk about 10 metres before all the pain starts up .. if I were to try and walk just 100 metres my muscles would go into spasm and have me crying with pain .. exercise only makes my fibro worse .. the less I do .. the better I am ..
1 person likes this
@patgalca (14236)
• Orangeville, Ontario
25 Feb 07
I didn't start at 3 miles, patootie. I worked my way up slowly. And sometimes it is painful. Sometimes I start walking and it hurts but then eventually the pain goes away. On Friday I was walking and the Deacon from the church, who is always there the same time I was, asked me to slow down and talk with him. I'm glad I did. I push myself too hard by walking fast. When I slowed down and walked with him I had no pain and was able to walk extra laps.
1 person likes this
25 Feb 07
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
2 people like this
@patgalca (14236)
• Orangeville, Ontario
25 Feb 07
After 11 years he well knows what I am going through. Unfortunately the first doctor that diagnosed me said, "Exercise and you'll be better in six months". My husband was at that doctor's appointment and in speaking with people he said, "We'll get through this." He didn't realize that doctor was a fool. He has been to other doctor's appointments with me and even got himself into counselling to help him learn how to deal with it. But he says one minute I'm crawling up the stairs and the next minute I'm running. It boggles his mind. Heck, it boggles everybody's mind. There is no rhyme nor reason to it. But when we struggle so much financially, he gets frustrated and I can't say as I blame him. I just hate it when he goes on one of his rants that buries me in guilt.
1 person likes this
25 Feb 07
Have you talked about your feelings of guilt and how it makes you feel? Perhaps going to counselling together might help you both to express yourselves and reach a better understanding. I'm sorry your doctor was a fool. It's only been in recent years that they realised the disease was real and not psychosomatic. Unfortunately some doctors are still old fashioned and ignorant. It is very real and unpredictable. If only there was some way to make non-sufferers understand. I do wish you all the best and you have my utmost empathy.
1 person likes this
@teison2 (5924)
• Norway
25 Feb 07
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
@patgalca (14236)
• Orangeville, Ontario
25 Feb 07
My husband has been understanding for the most part. He just goes through moods, especially when he sees his money dwindling away. Thanks for the hug.
1 person likes this
• Canada
26 Feb 07
Wow, teison, sounds like you have a difficult time as well. I don't think anyone can understand how difficult it is just to do the little things that they take for granted. Sorry to hear what you must deal with, but at least like you say your spouse is supportive. That does help. Hugs to you. {{{{{{{patgalca}}}}}}
1 person likes this
@coolcatzz (1589)
• Canada
25 Feb 07
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.
@patgalca (14236)
• Orangeville, Ontario
25 Feb 07
I don't think mother-in-law was butting in. I think he was just talking to her and she said some things about when she was experiencing pain and she found that being busy kept her from thinking about it. You could tell the words he used didn't come out of his brain. LOL! Not to worry, I socked some money away when I got my insurance settlement. Five years later it comes due and will be deposited in my account March 19th. I am soooo waiting for this.
1 person likes this
• Canada
26 Feb 07
Patgalca, hope you take that money and set aside some just for you and perhaps helping you out to follow your dreams in getting a book published. Blessings.
1 person likes this
@lingli_78 (12846)
• Australia
25 Feb 07
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...
2 people like this
@patgalca (14236)
• Orangeville, Ontario
25 Feb 07
Many times my husband has said there is nothing he can do to help me. He also would love to trade places with me (ie not have to work I think). I refuse to feel sorry for him when he is sick because, as I tell him, that is how I feel every day.
1 person likes this
• Canada
25 Feb 07
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.
2 people like this
@patgalca (14236)
• Orangeville, Ontario
25 Feb 07
Thanks for your support, and the hug. :)
1 person likes this
@missybal (4492)
• United States
25 Feb 07
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.
2 people like this
• United States
25 Feb 07
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.
• United States
25 Feb 07
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.
2 people like this
@bam001 (941)
• United States
1 Oct 07
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.
1 person likes this
@patgalca (14236)
• Orangeville, Ontario
2 Oct 07
My mother is empathetic, probably because she feels the same way every day at 83 years of age. She understands my pain. DH needs to be reminded. I couldn't get out of bed yesterday I was in so much pain. He said, "Do you want me to get you a tea?" I said, "No. I want you to climb back in this bed and hold me in your arms." He sat next to me and rubbed my back. He is just confused. Sorry to hear you have fibro too. Thanks for your response.
@gabs8513 (48764)
• United Kingdom
25 Feb 07
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.
1 person likes this
@patgalca (14236)
• Orangeville, Ontario
26 Feb 07
gabs, I spent 5 long years in litigation with my insurance company. I suffered with the realization of private detectives following me and video taping me. In the end we settled for a lump sum amount, which wasn't nearly enough. I did sock some of it away in an investment which is coming up due in a month after five years. It won't last long though. The government also didn't give me disability pension as I was too young and they didn't want to have to pay me from 35 years of age. I had ten different doctor's reports.
• United States
25 Feb 07
I feel sorry for anyone who is in pain, I have a lot of pain too. I am curious to know what fibremyalgia is.
1 person likes this
25 Feb 07
Best way to describe it: http://en.wikipedia.org/wiki/Fibromyalgia :)
1 person likes this
@youdontsay (3503)
• United States
25 Feb 07
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.
1 person likes this
@patgalca (14236)
• Orangeville, Ontario
25 Feb 07
The same thing happened to me when I started actively looking for a part-time job, I went into a flare. I have to believe that I am where I am because this is where I am supposed to be. I just wish I could do more, especially at home.
1 person likes this
@peni88 (469)
• United States
26 Feb 07
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.
1 person likes this
@Island_Geko (3760)
• Canada
26 Feb 07
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.
1 person likes this
• Canada
26 Feb 07
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.
1 person likes this
• Morocco
25 Feb 07
Sorry to hear you have fibromyalgia
1 person likes this