Thinking about the people who are with us every day

I was on a different site and a husband ,who's wife had FB came on and told us how he feels and do we ever think of how we make them feel.

I really take this to heart cause my husband of 51 years is doing everything I can't and on bad days I am very hard on him. I have sat down and really thought about this and it must be hard.I am a very changed person from the quiet gramma who just loved life and now I get very frustrated and I take it out on him, does any one agree with me that they are suffering too.

Just saying

Vicky

Absolutely Vicky! I know my hubby is suffering and he grieves for the wife he lost- the one who went white water rafting and camping and boating and swimming and worked hard and played hard and still kept the house clean and did most of the chores! Wow, I sound like superwoman. LOL. When I met my husband, we lived in Georgia. I am a paralegal and was working for a small law firm there. About three months after we started dating, I had a big trial to prepare for at work. We worked for 8 hours on Saturday and for 16 hours on Sunday and then got to work at 7 on Monday to get everything ready to get to the courthouse. And it was no problem- i liked to work hard and i loved the results my efforts got. This was only 4 1/2 years ago. My life has come to a screeching halt since then. I manage to do some things around the house to keep it presentable and I do some yard work but not as much as I could and it takes me MUCH longer. I want to go back to work so bad but I would be doing a disservice to any new employer and probably wouldn’t last very long. Part time jobs are scarce here and there are so many people that are not overqualified for them that I never even get a call from the ones I apply to. I finally applied for disability this month so now begins the long journey down that road. So yes, it is hard for them and I think it is especially hard on the men because they are fixers by nature and just want to find that magic pill that will make it all better. Also, they see us suffering and feel helpless because they can’t help, at least my hubby does. I hope this made some sense.

My eldest daughter (16) recently left to live with her dad cos she couldn’t handle it anymore. I wasn’t angry with her but she couldn’t understand why I couldn’t drive her around or why I couldn’t take her out for coffee after I said I would etc. I am heart broken but understand. My younger daughter (8) seems to understand more and accept it.

MBP-P, I could not have said this any better. but this is how our husbands truely feel, they can't fix us and it hurts them. Gentle Hugs to you both, Robin

I also have a very caring and understanding husband. He has been with me from day 1, before I was diagnosed. He was my support, we were dating at the time, and he could have walked away at any time, but he didn't. We have been together 13 years and 11 years of those married, so he knew what he was getting into from the start. Usually we are very supportive to each other, but since we are not perfect, rough patches do come up.

On top of my illnesses (I have Bipolar Disorder as well), he got into a car accident 2 years ago in January and the caretaker roles have changed. He has Post-concussive Syndrome and well as a Traumatic Brain Injury from the accident. I am taking care of him the best that I can, but sometimes its a little too much and I go into a flare. No fun there.

We lean very hard on each other mostly because our families don't know exactly how to act or be with us. Since we have a limited amount of energy, we have to choose wisely on what family battles we pick and mainly remain a distance from.

Yes, caregivers are a very tough bunch, but even they need a break as we all do every once in a while.

Yes! I do not have a husband, but I do worry every day about how my health is so hard on my three children. So often I have to physically force myself to run get them from practice or to make it to a sporting event or to make dinner. My patience gets thin, and sometimes I am just plain grumpy with them when none of it is their fault. My girls are 14, and they are great about helping around the house and cooking a meal here or there, or helping with their little brother, but they shouldn't have to have all of these responsibilities. They are supposed to be enjoying their childhood, not helping their mom out. I do my best to let them know what it means to me, and I try very hard to take care of things on my own. They are great girls and I am blessed.

I am about to get married next week and my fiance has been the best. I feel sorry for him at times bc he feels like he cant do anything to help me even though he does so much. My daughter is 7 and it is hard sometimes for her to understand that she cant jump on mommy and we cant play so rough anymore. So i try hard to keep things the same with her. I am a different person and i am learning to accept this journey that god has for me. But i agree that it can def be hard on loved ones.

Hi Vicky, I do believe it’s hard on them, I think it’s a great idea to try and remember what our family and friends close to us go through !!

Thanks for reminding us
Hugs & blessings

I. sue ere i to have f.b had it for 10yrs i to was a differant person. my husband was careing n understanding at first but after 6yrs i found out he had been turning to my friend for support n he then left me to set up home with her. this as had a bad affect on me n my fB is worse. tbat was all 5yrs ago now i av met a great man he took me on knowing that i was ill. n we r happy but sti lurking in tbe back of my mind wot if# so i understand how we all feel n yes the men that sti k by us do well god bless u all.

I sure think about it. For that very reason, even though I need help and want a companion, I will never get married again. I don't want to put any man through this.


sure its hard on my husband but he does all he can to help, he is ways looking for something we can do together, I think God for him,

Great perspective.

Vickey

It is like I wrote your letter. I all so take it out on my hubby. Then feel bad when I do. I talk to him after and say I'm sorry. But it is hard. The toung is a visicous weapon, and you can't take the words back. So I am trying to keep myself under controll. But it is hard and some days you can't help it.

HUGGS HUN

wE ARE HERE FOR YOU

S L M

My husbands great too. He said he feels helpless , but he holds me when I cry. I saw something on Dr. Phil that made me think, he said, "Ask yourself how much fun are you to live with?". I'm making myself be more cheerful, it's easier than being miserable. I'm still plenty miserable sometimes, but I keep most of it from him. Now I have you guys to commiserate with it's easier. So a great big hug and thanks to all of you! :)

I am so lucky to have my wife Lori. I was just starting to get fibro when we met. I had just gotten divorced from my first wife, due to always being "down with my back" when it was the fibro starting and I did not know what it was. So much for in sickness and in health. The divorce was actually the best thing to happen. Lori has been so supportive and understanding. Between fibro, copd, 14 bulged/herniated discs, depression, cronic fatigue, I am totally disabled and seem to get worse as time goes on. When I first found out I had fibro I got very depressed, and she stayed and put up with it. She understands that I hurt all of the time, tired all of the time, my bad moods. She works full time, mows the grass, does the laundry, dishes, house work. I do what I can to help, but its not much. I don't know what I would do without her. She takes such good care of me. She beleived that I was sick when no one else did, did not think I was faking it, being lazy or all the other BS that people said. She is the love of my life and I feel guilty that she is trapped with me and this damn fibro. I feel guilty cause I cant work and support her, do more around the house, be a good husband to her.

Brian

you are blessed to find a good woman. That was your design in life. You were ment to be together. You can't force anyone to love you. She knew this when she married you. You are her life and you are loving her. I think that is enough for her, just knowing she is loved. Don't feel guilty enjoy your happyness.

HUGS

S L M

I know its hard on marriages and the entire family. Recently, my 15 yr . Old daughter decided 2 live with her dad. (We had shared custody). I know it was hard on her 2 see me with this particularly intense flare 4 the last 8 weeks. It still hurts …but I’m trying to understand. Doubly hard because he left me forth same reason. (12 yrs ago) I don"t think kids that age realize how much they mean to us…I now have the empty nest here …(older daughter is in college)
I do have a special man in my life who wants me to move to NJ where he lives…talking about marriage . Its all happening quicker than we thought…and I’m worried my Fibro will end up being too much 4 him too. IF ur blessed enforcement 2 have a loving,committed spouse…love them up and tell them how much u appreciate all they do…do whatever u can 2 show other,too.

This is a great topic, Vicky. My husband is just first trying to understand it after being married 31 years, with 22 years of fibro. I was and mm still a great actress but for the last 7 months the actress in me retired and Mrs. Cranky came out. I really try to keep up, but oome days it's just not worth the facade. Takes to much energy. I have begun to share stories with him of some of you and how you suffer so - and am grateful. He gets as frustrated as I do with the lack of doctor's knowledge and how we are treated. My daughter, who is 27 and married wants her mom back! She said I was never snappy, I always wanted to joke around and have fun. Big difference now. I am so grateful that I have family that is still by my side. I think we all hope and pray they never give up on us. Thanks Vicky, for reminding us how lucky we are and that even though we are the ones suffering, they are suffering the loss of who we once were.

Vicky,

I think it's very healthy of you to take a look into your dynamics with your husband and to ask us to do the same. While we are suffering and DO suffer, you're right, we have to also be mindful of those we love, and not take them for granted.

My sister is the one who takes care of me. I'm so thankful that she does and yet I'm not sure if I tell her or show her enough. But now that I'm ill, she's stuck with most of the chores. Whereas before I could do the gardening and help with the yardwork, now I can't. Nor can I do much housework. And I can't work full-time, so can only make minimal money. It's not a fair situation at all. So I try to do somethings that make life easier for her, like shopping and putting a nice meal in front of her each night (not much home cooking anymore, unfortunately.)

But you are right, we should be mindful of those who love us and also help us. They may not be ill but they're also affected by our illness and we owe it to them to do our best to treat them well.

Right you are, Yin Yan.

And I'm sorry that your daughter has gone to live with her dad for now. Kids can be pretty "me" centered at that age and not realize the impact of their actions upon others. But I'm sure she does love you and will miss you.

And congratulations for finding someone new. I hope you have found a perfect match and someone who can understand your illness. There ARE good people out there who are strong and patient enough to deal with this.

Hugs to you,

Petunia