# From a spouseï¿½s point of view!!!!



## Guest (Apr 11, 2001)

This is from a spouseï¿½s point of view, they may vary, but this is mine.And for you Ladies going through this on your own this may help your family and or friends understand. When the wife started with the I donï¿½t feel good, and my shoulder hurts, and my knees hurt, and my back hurts. I was a little skeptical at first and also noticed that I was starting to take on more of the every day chores. Trips to the store, taxing the kids here and there, ect, ect. I did this extra work no problem, I could see that she didnï¿½t feel good but did she really feel that bad. I kept saying this was all going to pass because all the test were showing that nothing serious was going on with her and there was no large growth on the side of her face that we could see. Well of course it didnï¿½t stop and now she is starting to miss work and when her RN hours started to drop (well you know). At this point I am still keeping it together but becoming very frustrated. And now I am thinking to myself when is she going to start doing what she use to. But it just gets worse and now she is missing out on a lot more of the kidï¿½s daily activities. What is going on, nothing is what it used to be and everything is becoming more stressfull and is really starting to wear me out. I love my wife! And just want it all to be the way it was, why cant she do what she did the day before!!! Why cant she remember anything, she forgets to mail the bills and forgets to pick up the kids would go to the store and not even bring back what she went for. Well now its time for me to take over everything all the bills and shopping everything. As a man I will say that my wife has always taken care of our finances for the last 19 years and did a very fine job, better than I am. Now I have to stress over all of are finance too and every time the kids need anything, she always says go talk to your dad, I cant make that desition, I donï¿½t feel good leave me aloneï¿½. Ok this is it, she has never did that to the kids before. We are now on a very fast down hill slide, I never know what is going to happen from one day to the next. OK, does any of this sound familiar? Itï¿½s now time to think back to when every thing was just the way we wanted it; what has changed and why. I stop and do some real soul searching, thinking and a lot of praying. I think that some how over the years I had let are marriage turn into a routine, you know what I mean, every one has there own part and that was just the way it was. (Remember the daily goodbye and how was your day kissï¿½s are they still the same). The good old routine and when the wife became ill it changed that routine. When this all started I had ask my self did she really feel that bad. I donï¿½t know I was not sick, I was not in her shoes. Was I more worried about the changes in our life style and ignoring the health changes in my wife? I am truly ashamed of my self, the answer was (YES). Is she still the beautiful, caring, and loving woman that I married, the same woman that had given birth to three beautiful baby girls and one very handsome son (YES). Is this the same wife and loving mother that would spend every extra bit of her time with our kids and that loved her job and gardening and o yes shopping with the kids and walking the mall for hours (NO). This is not like the women I fell in Love with and she really is getting sicker by the day. Now what should I do?Do I continue to blindly ignore my wifeï¿½s illness, all the pain and depression? Please donï¿½t get me wrong I Love my wife and have been helping her a lot, but my stress and aggravation at times was very noticeable. I can only imagine what she was going through, not only was she getting sicker, but I know that my frustration with her at times would make her feel like she was a burden. How is it that sometimes we can be so cold and heartless and not realize it. Or should I just walk away from every thing that I Love so much because its just to much to deal with. Well I donï¿½t believe that running away is even an option. But if I am not welling to make a lot of changes, then I should just leave. There is no need in making her more miserable. And Ladies, when it comes to a man trying to keep up with these rapid changeï¿½s in health and lifestyleï¿½s, well its not easy. And I can honestly tell you that it can be very, very frustrating. Just too many changes, I can never plan to do anything like I use to. Life is becoming just a day by day thing, and I just never know what to expect. And I think that with all said, this is the true test for the relation ship.So whatï¿½s it going to be!! It boils down to only two choices!1. Give up and walk away, just try to forget every thing. All the good times all the memories and what it was that drew us together. And what if the rolls where reversed and I was the one being slowly eaten up with this invisible and very debilitating illness. 2. Well I have chosen to take care of the one that has given me so many happy memories. And I will be the first to say that this is not at all easy and has required me to make a lot of changes. And there is no grey area here it is all or none! Stress plays a very big Part in these illnesses and I do not need to be adding to the stress that this invisible and very real illness puts her through on a daily bases. What are the things That I can do to help with her stress, I think that the first thing is to lose the attitude and then focus on complete and total understanding of what my loved one is going through. The attitude; They notice it and we know it, and do any of you think that if we are under standing only part of the time, that this should be enough. Ok lets think about this and say that we are very supporting for a few days here and there. You know what I mean, a smile instead of a frown, a do you need anything while Iï¿½m up, no problem Iï¿½ll make supper tonight do you need any thing while I am at the store and I will go ahead and pick up the kids while Iï¿½m out. While this is happening it is obvious that she is very thankful of the support and help, she is looking a little bet happier (you know, there that smile is that I so rarely see anymore). But then for some unexplainable reason we start with the attitude again and I am not going to talk about that, we already know exactly what it is. What do you think that this emotional roller coaster ride is doing to our very sick loved ones? Remember there is no grey area here, it is all or none. And once again, what if the rolls where reversed and I was the one being slowly eaten up with this invisible and very debilitating illness. This is how I am trying to help my wife or should I say help myself to help my wife. I put my self in her shoes, I listen when she says that she is hurting and when a new symptom starts in, I will find out as much info as I can about it. It is so very obvious that she is going through a lot of health changes. Is this her fault, did she ask for it, does she deserve to have every thing taking away from her? Like I had said earlier I have taken over the entire household from A to Z. The only way that she is going to get better is to get the rest she needs and no stress. Lets see should I go ahead and go to the car show today. I know that one of the kidsï¿½ needs to be picked up while Iï¿½ll be gone and the wife does not look like she needs to try to drive across town. I will never again put such a material thing before a loved one. Did I have to sale our dirt bikes and trailer yep, so what, thatï¿½s just a material thing. The same as hunting trips, fishing trips, the boat, the cars. These things can be replaced however, my wife cannot. I would much rather have the memories of the joy, happiness and love that only a family can give. We are now going to separate the men that are willing to make the changes for their loved ones, from the ones that are unwilling to break the routine or have just given up and I will stop at that. Ok we already know what changes we need to make, Never act like she is a burden, Never expect her to be able to do the things she use to not until she feels that she is ready. If you get up to get something for yourself ask her if she would like anything and stop on your way to give her a kiss. Always let her know that you love her. I do not believe that you could ever say ï¿½I love youï¿½ to a women to many times. And I know that we have all been through the cry spells, never just walk away, ask her if she needs anything. And if she says that she doesnï¿½t know what she needs then just go over to her and tell her how much you love her, rub her shoulders or knees, what ever it takes to make her feel a little better. And you know what! We can also do this even if are Loved ones are not sick. Do I get the feelings of being completely overwhelmed at times O you bet, who wouldnï¿½t, we are all human. Sometimes we may need to get some extra help to get through it. Mine is God and my love for my wife and kids. I also go to speak with a counselor or are minister, just whatever it takes to be strong for the whole family. Remember Pray and Love can conquer all. There are days that I get up and I just donï¿½t feel right and no matter what I do, my wife is going to notice this and she is going to think its all her fault. The first thing you need to do is ï¿½and trust me on this oneï¿½ go to your wife and just be honest. Tell her that you just donï¿½t feel right today you just feel a little down. So if I seem frustrated and distance at times today PLEASE forgive me, its not you love, I know that you didnï¿½t ask for this illness and we will get through it. They will be a little more understanding then you may think because they go through these differnt feelings on an hourly basis. I am so glad that I made all these changes early on in the illness. There have been so many changes sence then and every one of them have acually brought our family so much closer then I could of ever hope for. Between my wife and sonï¿½s illness and all the added stress for my daughters and I, with all things that we are now doing without. There is more love in this house then there has ever been and I am happy to say that the love is so strong thereï¿½s no way it can be missed, a smile can say so much. I could go on and on about the little things that we can do to show that we Love our wifes. I could even make a list, but I would have to always be adding to it. Every day is a learning experiance and with every day our love should grow. I look at it as never let your love stop growing and the relationship keep going. You canï¿½t have one with out the other they must grow together. And ladies I would like to thank you all for the many years that you have spent taking care of us and our family and our homes. And I promise you that every time I here another man say that all his wife does is take care of the house and kids, I will let them know what I think. One more thing I donï¿½t know where I heard this but at some point I was told that moms can always do it all and if they got sick it was no big deal because they could still keep going. They are all SUPERMOMS! Does anyone know how this got started who said it? I hope this is not in the male genes because I can not remember where this memory came from.My wife was misdiagnosed with Fibromyalgia and then as she continued to deteriorate she was given anouther misdiagnosis of CFS. What she acually had was Lyme Disease and Babesiosis, at this time our 11 year son was showing the same symptoms so we had him tested he also has it but we caught his in the very early stages. The symptoms of all three of these illness are very much the same. Please go read on all three, getting involved and leaning about these illness will help us understand. If anyone would like to read all the info that I have on my wifes illness and the info that I have on Fibro and CFS, let me know. But it is very long with lots of links and it will take up 4 e-mails.Thank you for your time Sincerely Mike Hysom MyFamily1st###aol.com


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## Debbielee (Jun 14, 2000)

What an absolutly beautiful post. I am the wife and my husband is living it.I dont know if he will stand with me. He says he will but has addmitted the added responsibility scares him. I was in nursing also--just went on medical leave 6 weeks ago as i was missing more and more work. This started 10 months ago for me and has been a major struggle as i loose more and more. I still keep my house but not as well as before. I still must find some work i can do--just not sure how.I am still going to a leage of Dr.You see--i was dx with FM and then Lyme which now they say has triggered FM. The big question for me now is if the Lyme is gone. No one can agree.In the mean time i get worse--never seem to have the "good days",So i am very interested i your info--please.dcooleywi###hotmail.comDebbie


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## Debbielee (Jun 14, 2000)

sorry--my e-mail was wrongdlcooleywi###hotmail.com


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## Guest (Apr 12, 2001)

Great post I sent your letter to my boyfriend. Who has been very supportive of me. It brought tears to my eyes. It's not fun having any of these in are lives and it can change a lot. But the main thing is to stay strong. I.ve also been sick for about 20 yrs. With a major car accident to many surgeries and Then IBS/CFMS/ and now FMS. Still run my own business for now. Aloha, Kathy


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## weener (Aug 15, 2000)

Hi Mike, what a touching letter. We don't get too many responses from spouses on this board, so it is nice to hear what your feelings are. I know men don't talk about feelings like women do, so I appreciate you sharing with us. You sound like a wonderful person and obviously you care very much for your wife and children. I have lived with FM for 15 years and it has altered my life considerably, but I march on one day at a time. I am also very lucky that I have a supportive husband. Somedays, I'm not sure what he thinks of me, but I know that if he were granted one wish it would be for me to get better. Have faith that everything will work out. Thanks again, Mike for sharing your feelings with us.


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## moldie (Sep 25, 1999)

What a gem of a guy! At first I wasn't sure where you were heading. I am glad you are hanging in there. I often think my husband would be better off without me dragging him down. He went through some very difficult years with me when I had an infection that no one could diagnose. I know he would like to see me go back to work (I was a nurse too- an LPN), but he also knows I can't go back to the nursing I was doing. I did it for 20yrs working second shift, while my husband worked first, and we raised two sons. When I would get home for work at midnight, sometimes, he would have a surprise waiting for me (poopy diapers to wash out and vomit on the sheets). I thought I had just done all that at work!!







Then get up the next morning between 6 and 7 and get them off to school, or when they were younger, feed them and give them a bath, clean the house, make lunch, and take them to a babysitter for a couple of hrs., while I went to work, and my husband would pick them up, feed them supper, try and do the dishes, watch TV and put them to bed. On my days off, I would take them to the park, swimming lessons, or baseball practice, give them birthday parties, etc. When I had a weekend or holiday off, I would take over the diapering and feeding, unless there was some reason I absolutely couldn't. I trimmed the hedges, did the weedeating, gathered the garbage together, did the shopping, took the kids to the doctor and dentist, washed and vaccummed the vehicles, painted, stained and varnished. I would have mowed the lawn too, but I couldn't start the mower, and my husband said the lawn is so bumpy, I couldn't handle it anyway. I still manage to do most of this (though much slower), but then I don't have the responsibility of working outside the home. It would just be too exhausting. I feel like a woos. I grew up on a farm and was used to working. I feel defeated. I know how dissappointed my husband is about me not contributing to the finances. We have not gotten in any financial trouble, and have a little put away. He values money a great deal though. It is difficult to say he loves me, unless I say it first. He also doesn't say "thank you" very often. Sometimes I feel like nothing more than a whore and a slave. I no longer have a car, even though I came into the marriage with one. We have given each of the boys one. I do my wifely duty, because I feel that is the only thing that keeps him from leaving, and it is the one gift I give him that he appreciates. I know that is a terrible thing to say, but that is how demoralizing losing one's health makes you feel sometimes. I know he cares, or he wouldn't still be here. I keep my spirits up by tutoring English and helping children with their reading. This is my only feeling of being a productive member of society. I do the best with what I've got. I plan on trying to get a part-time job in the fall to see if I can do it, because I know that is what my husband wants. I just want to maintain my health so we can grow old together.I hope your wife feels better soon. I don't know much about Babeseosis. Perhaps you can fill some of us in, as I don't e-mail anyone on the web. That's my policy. If not, I guess I could get up enough gumption and look it up.







Thanks for sharing. I should talk, but maybe she should see someone for depression if she hasn't yet. Is she on any medication? I don't really feel like I am depressed but maybe I am in denial. I try and make the best of what I got. When your wife gets out of her depression and the treatment works enough, she may go into a little remission somewhat, and do better. I can't imagine dealing with this when the kids were small and twice as many. I will pray for you and your family. Take care, and I hope you both hang in there. M.


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## Debbielee (Jun 14, 2000)

ahhhhh Moldie----your post was right on--at least for me. I relate. Also sad in away.If it wasnt for the fact that i worked and held things together many times when my husband sat on his butt due to his "issues", im not sure he would still be here. Even with that, im still not sure.We live in a day and age where woman are expected to work outside the home and raise kids and keep house etc.... no wonder we are ill.The role of house wife is no longer respcted. Nor is it enough. That is sad.Most men could not do this. Nor should they. Some must both work in order to survive. In other cases it is just a work till you drop to achieve a certain lifestlye. Which is fleeting at best and can be taken a way at a drop of a hat.Our husbands would expect us to be there if they got sick. And we would be.Everything is back wards these days. I dont know what the outcome in my case will be. My marriage wasnt stable to begin with.It is important for me do something worthwhile. I am a caretaker to my mom and am babysitting my grandkids. Thats enough for now.The problem with this condition is that we look ok and there are days that are good. I know my husband wonders---like how is it i can go visit a friend but cant work? What he doesnt understand is i cant always go see a friend but when i can do stuff i am going th well---whatever will be --will be.I have the Lyme/FM---time will tell.Debbie


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## moldie (Sep 25, 1999)

Thanks Debbie, I am glad someone can relate - (well, maybe I'm not, because I don't want anyone else to feel this way). I probably shouldn't have used the word "whore" so freely, "kept woman" is more like it. I know I am not a slave, either, because I have a free choice whether to stay or do the things that I do. Sorry to be a whiner, but sometimes I just have to let this stuff out, and see if I am the only one feeling this way. I normally wouldn't say stuff like that in the company I keep, but it is so much easier to let those gut feelings out here. Do you think my Mom and his Mom ever felt this way when they weren't working? The reason for them not working, wasn't because they were ill either. They had a job at home raising children and keeping house. I know I didn't look down on my mother for not working outside the home and I don't think he looked down on his Mom for not working. My husband still insists that I only had a part-time job then! Excuse me? [This message has been edited by moldie (edited 04-14-2001).]


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## Debbielee (Jun 14, 2000)

sheesh moldie---part time? ooooooh that kind of stuff just sets my blood to boiling. But what can we do? Society has screwed everything up. I know how you feel--there is safty in venting here and thats why we are here--vent away anytime. I do  To chancy talking about this stuff with our immiediate circle--cause there is always that "well meaning" big mouth!My husband started in on the money yesterday. It didnt look good--he got real cocky but reversed himself right about the time i was going to remind of all the YEARS i worked and he didnt. I told him--if he didnt want to stand by me in this--just let me know as i would have to make other arrangments. I am at a point in this illness right now that i cant even force myself to work. Oh well--its in Gods hands.This was not a stable marriage the last 3 years anyway--so my getting sick is a real test.Take care--and have a Blessed EasterDebbie


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## Feisty (Aug 14, 2000)

First of all, Mike, THANK YOU for the poignant letter you posted. You are trully a "gem". I do hope your wife can eventually find some relief. Moldie, and DebbieLee------I hear you girls, loud and clear!! There's so many times through the years I've felt exactly the same way. Hubbie is somewhat better, as long as I don't mention too often how rotten I feel. It's been really rough the last two months and this morning when I went in for a therapeutic massage, the therapist said my muscles were so stiff and hard. She asked me if I was ever tested for Lupus. Now I have something else to think about-------and I don't want to. When I mentioned it to hubbie, he sort of rolled his eyes, so I just walked out of the room and ignored him. I know it's tough for the family, but somewhere along the way those "healthy" individuals better start counting their blessings and begin to realize how painful our days and nights are. It sure isn't a picnic for us. What I wouldn't give for a "normal, painfree day"!!Take care everyone. I haven't been posting much. I needed to start working to bring in some extra income and it's taking it's toll. (I'm a professional housecleaner---not an easy thing to be doing with the Fibro so bad, but I'm better off moving than not) and now I'm also dealing with chronic cystitis and bladder infection big time, etc., etc.-------always something, you know?!?!Karen


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## mamamia (Jan 21, 2000)

Dear Mike,The fact that you would even take the time to post to this board is amazing, you are a truly good guy!! Here is my suggestion to you. I was a single parent for many years. I worked two jobs, cooked, cleaned, washed, chauferred, the whole nine yards. (This is part of the reason, I'm in the shape I'm in)Anyway, what I'm trying to say is, if you were a single parent, you'd have to do all you are doing. At least you have your wife with you. Someone you know is a good person whom you love. My ex-husband still owes me thousands and did nothing but make my sons and me miserable for years after we divorced.There are plenty of single parents out there who can sympathize with your plight. Don't make yourself sick with guilt and worry. Let things that aren't important go!!!!Talk to your wife about all you are feeling. Being able to do that is worth a million.God bless you and keep you, sweetie.love, mama-


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