Fibromyalgia Symptoms HOME

Hi,
What you are feeling is very normal. You are probably feeling no different than someone who is the caregiver of a cancer patient. maybe you could think about getting some help with the children so you can have sometime to yourself. Your wife isn't the only one suffering, so are you. If you don't take care of you, you won't be of any benefit to her or the children. Check with a neighbor or a friend. Maybe they can pitch in and help with the kids once or twice a week. Give you a break and maybe your kids too. Please don't forget your wife. She needs your love and support. I feel for her. maybe you two can spend an evening togther when she is feeling up to it.

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Hi MJ, I can tell you my husband feels the same way you do and we don't even have children. I have fibro and he does everything around the house: laundry, grocery shopping, caring for pets, paying bills, etc. We do have a house cleaner and I recommend it if you can aford it. I used to work but had to quit due to my symptoms but when I did work I was just like your wife and would just crash on the couch when I got home and would complain of being in pain. I wish there was some way to get you in touch with my hubby so you guys could chat and vent. I don't know if you have family or friends that would be willing to help out some. I know we are not good and asking for help and I know my husband wouldn't be willing to. I'm sure it's hard to not feel resentful. You can probably commiserate and discuss it with your wife if you target your resentment and the condition and not her. The hard part for those of us with the condition is we start to think badly of ourselves and the fact that we do not accomplish very much in a day. So just be careful not to direct your resentment at her. But if it's directed at the condition you guys can commisserate together and talk about all the things you both hate about it. Believe me she hates it as much as you do and hates the fact that you have to do everything. She may not say it but she does. You guys are on the same side and need to wage a war against fms. It's the enemy. My husband and I are still dealing with this issue and have not found an effective solution so I won't pretend to have an answer but I hope it helps you to know you are not alone.

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Make it a priority to find your own circle of support - whether that is a support group for caregivers, a friend, or a life coach who specialized in supporting people affected by chronic illness.
The fact that your wife has FM is creating huge shifts in the "roles" you once accepted without question, and just as every aspect of her life is affected by this disease, so is yours. It is normal to grieve the loss of your companion in activities she can no longer take part in, and it is absolutely normal for you to feel frustration, disappointment, fear, anger and resentment. Just know that these feelings are NOTHING TO BE GUILTY ABOUT! Accept the feelings and then try to find acceptable solutions for some of the challenges and issues you are having to deal with.
ONe of the things I often suggest to my "mainstay" clients is that they find a way to get some sort of break and time for themself every week if not every day. It's vital for your own emotional balance and stability!
As to the increassed duties: if your children aren't old enough to delegate some of the chores to, consider greatly simplifying the list of things you feel you "should" be doing. Then, eliminate as much as possible and find ways to streamline others. If possible, get a bit of help!

Lastly, communicate with clarity and with love what you are feeling to your wife. She probably suspects how you feel anyway, and by sharing the concerns, issues and changes on both sides of this disease will eventually bring you closer than ever.
eve

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and if you want to talk to me about this in person some time- email me at evereddinlennon@yahoo.com

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It is very hard to live with anyone who has a chronic condition.My heart goes out to you.I think the most important thing to do ia be honest.You have rhe right to have your own time as well.If you could make a schedule,of quiet time,and fun time for yourself,it would reduce the stress of it all. It is a must that you enjoy all the things that made you happy before this new way of living came to be.You have a new wife with new needs.You are still who you were and have the right to still enjoy life.When your happy your whole family will be happy.Think of fun trips for yourself another trip for you and the kids and very short trips with your wife.I have Fibromyalgia and I am so happy when I know my family members are keeping thier life normal.You still have energy and should be enjoying life.Parks are free,picnics are free,walks are free,many many trips can be fun.Fibromyalgia limits our time and energy and love short trips,so it is necessary you plan fun for yourself and family on your outings,to have as much fun as possible.Its olay,believe me,when my family members are gone,I can truly relax and enjoy my quiet time.So you would be doing both of you a favor.

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Remember who she was and not what you want her to be. What would of she had done for you if the situation was reversed? Get rid of your logical thinking and self serving pity and deal with your situation as a man and not a child. Your wife would of dealt with this problem in a loving way inspite of the unbelieable hardships.Make all men proud of you and be an example to all.

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Do an assessment with your wife of things that need to be done around the house and prioritize. Pick something that you can afford not to do and don't do it. Save that time for yourself and take care of you. With three kids, I'm sure it must seem as if there's nothing that can be lain aside for a while and not done but take a second lookk. Surely there is something that can wait while you spend some special time with yourself.

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All I want to say is God bless you for taking on the responsibilities of doing the things your wife can't do. My husband doesn't do that.

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I feel for you MJ. I am in the same situation. My wife has been diagnosed with FM but we haven't totally accepted the diagnoses...we are waiting for the hammer to fall and for MS or something similar to be diagnosed. Anyways, I feel the same way. I feel put out when she constantly asks for things and that I am doing everthing around the house. We also have two little girls (4 and 2) and life if very busy. I'm upset that if I don't do things it doesn't get done...we moved into our house 18 months ago and still have main rooms in our house that are cluttered to the point that there are only walkways through the clutter. I hate that I feel this way, I feel like I'm not supporting her...I know that what I am going throug is only half of what she is experiencing and I feel selfish but I still get angry when nothing gets done. I hope I can find the strength to deal with this. I want to help her as much as I can I don't want her to feel like she is alone in this but my emotions get in the way.

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You both need to ask for extra help from family if possible, or friends, so then you are not feeling resentful. Its so hard to deal with, but you are wonderful to help your wife the way that you do.

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Hi MJ
Imagine what it is like for you to have the flu but to have those symptoms day after day with no relief.
Sometimes I feel resentful because I have to work outside the home, then come home to find nobody to help me with the work around the house. I have to remind myself that I am not superwoman and anyone who doesn't have FM doesn't know how I feel.
I have to ask for specific help from my husband and kids and sometimes explain why--usually the explanation is I have FM and I am exhausted and in pain most of the time, I don't sleep well, I have severe bouts of diarrhea at times and bad stomach aches, I miss not having sex like I used to and I can't have orgasms anymore. Despite how careful I am in eating, I have gained more weight than I want to carry around, and I can't exercise as well as I used to. I get severe headaches on days when the barometer drops below 30 when a weather low pressure is coming in--I could go on and on with the list of symptoms, but I think you know about these but you don't know how they all feel.
Perhaps you and your wife could work together on whatever needs done at the same time and get the kids to share the duties--this helps me a lot.
Sometimes FM affects my confidence in being able to complete everyday tasks, or sometimes I start one thing and forget that I have started it and start another. Also some days I have "fibrofog"; I can't prioritize my responsiblilites and I feel overwhelmed.
I have good days and bad--good days means I can handle my duties, bad days means some things have to slide and remain undone.
Working outside the home, caring for young children at home, and doing home duties is overwhelming for a healthy person as you are experiencing for yourself.
Simplify your lives; decide on a daily basis what is necessary and what can be done another day or done differently or not at all.
Train the children to do as much as they can for themselves.
Communicate and work as a team with your wife and children.
Do some fun and relaxing things together as a family and separately.
FM changes from day to day. Your wife is under a lot of stress as your are, especially if she works outside the home--this increases her pain and fatigue. Encourage her to do what she can, but don't assume you know what she feels or that she is being lazy.
FM is not only painful and fatiguing, but if she is on meds, some of the side effects are hard to deal with and sometimes the meds don't really help at all.
Read up on FM and try to understand the illness.
Some men dump their FM wife, or get angry and yell at them for not doing more work--hope you don't ever fall into those catagories.
I wish you the best, but only you can decide what attitude you will have with your situation.

Best wishes and warmest regards,

J













J

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Welcome to the world of a Fibromalgia famly memeber.

I can empithise with you totally and can pass on a few words of advice if not comfort.

My wife has had to give up work, and is severly restricted as to what she can do. Also every thing she does do there is a payback, in pain the next day.

Ok resentment you have to find a space to have a good shout and scream to let it all out. Away from evryone else it works trust me.

The kids dont know how old they are but you need to get them on board, get them to hel out but remember they have a life too.

Prioritise what has to be done and plan it out. A little often gets it done, also dont go overboard, if its untidy then just maybe it can wait a little while.

Remember howerver resentful you feel your wife feels 10 times worse, and she has the pain to go with it.

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MJ, There is some really good advise here. List what needs to be done and deligate to the kids if age appropriate.

My husband pays ($10.per hour) for a housekeeper to come in once a week to do the "big" things...like vaccuming & washing the floors, changing the bedding, cleaning the bathroom and kitchen. Then the rest of what needs done isn't so overwhelming to me and I can pace myself with the laundry etc.

Might be worth looking into...I know money is tight these days...but it can relieve so much tension...that isn't good for anyone.

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I know it is hard. I am a single mother of two and have been diagnosed with FMS for 3 years now. You have to keep a positive outlook and when things get crazy remember she didn't choose to have this disease. I am sure that she would love to run around with her children and hang out with her husband, I too suffer because, I have no strength to play with my children. It is hard living life with FMS and it is hard being on the other side too. Good Luck and best wishes to you and your family This has really helped me to get people to understand how I feel.
An Open Letter to All Who Do Not Have FMS

Having FMS means everything has changed, and a lot of these changes are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand .. These are the things that I would like you to understand about me before you judge me ..

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about my work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting the act of standing with "sitting", "walking", "thinking", "being sociable" and so on .. it applies to everything. That's what FMS does to you.

Please understand that FMS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes .. may frustrate me to tears, and is not correct .. if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too .. you're my link to the outside world... if you don't come to visit me then I might not get to see you. ... and, as much as it's possible, I need you to understand me.

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I am very sorry to hear about the trouble your family is dealing with.

I, like your wife, suffer from fibro and RA. I have a very very bad case which causes my family to do more at home.

I asked my husband once if he was angry for having to do the cooking and cleaning most of the time when i am sick and he responded that he does it for love.

He made sure that i knew that when he married me, it was for sickness and in health, unfortunately the sickness came in our 30s.

He said he gets tired and it can be frustrating sometimes, but that he never lets it interfear with the way he loves us all and does it to help me since i live in horrible pain and would give anything to be normal like he is.

You have to think of it as helping, always always remember that she is very very sick and the pain is extremely horrible and how lucky you are to be healthy and that can help you know that what you do is important.

Also, talk with her about having a semi clean home, buy takeout or fast food sometimes, clean every other day or so, just don't let it build on you. By doing that, you won't have to be tired all the time from all the work.

HOw old are the kids? If 5 or more, they can also help at home with cleaning by dusting, making beds etc.

YOu can also ask frineds and family to help by taking kids on weekends, helping at home etc. they can also spend some times with your wife and kids when doing so and that gives you some time off and people for her to be around since she doesn't get out much.

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