AnonymousSeptember 29, 2008 at 4:11 pm
hi all. just needed to vent today. as some of you may already know, i’m approaching my seven year anniversary of living with gbs residuals. i’m asleep from the nose down and my left hand and knees are partially paralyzed.
to make a long story short. i am on permanent disability. i was making phenominal money when i worked, but as alot of you know, social security disability doesn’t pay much. therefore, my husband is now working 7 days a week. his full time job is with a scaffold company doing everything from estimating, sales, driving and even building the scaffolding. i jokingly tell people that he’s a professional errector. he also has a part time job driving nurses to their assigned nursing homes.
well anyway, last tuesday john fell 21 feet along with a piece of scaffold and then hit a guard rail. he didn’t break any bones, but got badly banged up.
i’m feeling guilty, because i feel that if i didn’t get sick, he wouldn’t be forced to work seven days a week and maybe he fell because he got tired. i am blaming myself for his accident. he’s not blaming me. he told me; “you didn’t ask to get sick” and “i’ll do whatever it takes for us to get through this”.
i guess i just needed to vent. my head tells me it’s not my fault, but i just feel guilty…………
AnonymousSeptember 29, 2008 at 4:24 pm
🙂 Hi Deb…
Sounds like you guys are going through a lot… When we are “disabled”, alot have to turn to our support group to fill in the gaps… You husband is that gap filler…. However, you are contributing in a lot of ways… True, you are not bringing home the big bacon. But, you are still contributing to the nest age.. Don’t feel guilty about that…
In no way are you responsible for you husband falling off a scaffold.. I don’t see that there is any connection…. However, I am wondering if the money is that tight for you guys, or could you do on less.. I personnally learned you can always make more money, but the one thing your family doesn’t have is time.. Also, a lot of stress/fatique/health issues come into play… This is just a comment, take it with a grain of salt.. The main thing is your husband didn’t get hurt…..
Remember, you are contributing, just isn’t the same as before, but on the other hand maybe you have more time for your family….Dean
I hope this doesn’t come across as too preachy, as I don’t know your finances etc.. I’m a little concerned that you are operating at full steam, and wondering how long that can last, or if you have “what if” scenarios… Like Dawn says maybe there is a reason things are coming to a head….good luck….
September 29, 2008 at 4:54 pm
Sorry you are having a rough go of it lateley. I know you know it is not your fault in reality, but I understand your guilt. I have a situation in my life that makes me feel guilty too. God really does not pass out more than we can handle, but I wish he could go a litle easier on us. When I am really down I try to think of what did come out of this cidp crud. Luckily your husband was not severely injured and maybe this is an opportunity for him to take a rest. Your illness and his fall have nothing to do with each other. But the fall may be telling him to take his second chance and use it wiseley? Who knows? I try not to rationalize all day any more (just part of the day!) one day at a time. BTW, I bet you contribute more than you think, more than your disability check. Love, courage stregnth, cooking, kindness, all sorts of things that only you know. Best wishes sent your way!
Dawn Kevies mom
AnonymousSeptember 30, 2008 at 12:26 am
[FONT=”Arial Narrow”][SIZE=”3″]Awwww…Deb it sounds like you have a great husband, someone who’s caring, and loves you dearly. But I do understand the part of you feeling guilty; just be thankful nothing serious happened to your hubby. I hope he feels better real soon. [/SIZE][/FONT]
AnonymousSeptember 30, 2008 at 4:57 am
Dear Deb ~ how well I know those feelings! My husband and I were married just 2 months when the GBS hit. I would not have survived without him! But . . . the guilt I experienced was devastating for quite some time. I think that it is just part of the acceptance process. Seems we have to “work thru” the grief of losing the way of life as we knew it and how it’s changed our spouse and others lives, too.
My only advice is: when your hubby says “I Love You” and “I’ll take care of us” try to feel it with your whole heart. He is so right, you didn’t ask to get sick. And if the rolls were reversed, you’d be doing and saying the same things! Remember that part of the vows that said in sickness and in health?? He sounds like a great guy ~ hang on tight 😀
I wish you courage and to be well 🙂
AnonymousSeptember 30, 2008 at 12:41 pm
I’m so sorry you are having such guilt feelings. although I can totally relate to how your feeling. When our lives change so drastic it is difficult. Every day I just wish I was normal again & able to work.
Thank God your husband was not critically injured & you still have him & his love 🙂
Hang in there, we are always here for you to vent anytime.
AnonymousSeptember 30, 2008 at 1:00 pm
Deb, I am sorry you are having some bad days right now.
I think we can all relate somehow, somewhere with this crud. I am still able to work fulltime but there are many aspects of my life that have really really changed. One for instance is that I’m not the wife I once was and that kills me more than anyone will ever know. I have a fantastic husband that deals with all that I throw at him. He’s there for me when I need him and I know that I am lucky. But, at the same time, I know that no matter how much he tells me it’s ok, that he’ll go to the store, or he’ll clean up the house, or for me to go lay down…it’s not easy for him either. I miss the old days so much.
You are lucky to have a supportive husband b/c I dont think we are all so lucky that way. Thank goodness he’s ok and try to go easy on yourself.
I know how it hurts…in a different way…but, it still hurts. It REALLY helps to come here to let it out.
well wishes to you….go hug your hubby and remember, it’s going to be alright. Tomorrow is another day.
AnonymousSeptember 30, 2008 at 4:21 pm
I am a caregiver for my husband and I too feel quilty. It is just the way it happens sometimes. I want so bad to help him that sometimes I have to control things as he is not proactive. I get alot of compliments from friends and that they worry about me and I guess that is because they see and know how much I care and that I push so that he will get better.
I feel guilty because nothing goes right anymore. It has been 3 years since he came down with whatever it is. Diagnosed and now maybe undiagnosed by 2nd opinion. Did I push enough. Should I be harder on him when he is suffering so much. Maybe I could have convinced him to change doctors, but then it is him that has the disease and I do not want to make a mistake for him.
It is normal to feel the way we do however we are in this together and I would give anything if I could trade places with him and I am sure your husband feels the same for you. So you are not along in this. He is standing by you and just let him know how much you appreciate it.
My husband does not tell me he is thankful for me but I know he has a hard time talking about it. All I can do is keep trying and hope things get better.
I am not much of a church goer but I do believe in god and I am hoping he hears me.
AnonymousSeptember 30, 2008 at 11:50 pm
Like you, before all this (CIDP in my case) hit, I was making phenomenal money and well down to road to partnership. Now I am on permanent disability; and while it is wonderful that I have it, it is not the same. I agree with the others that you surely contribute in ways that you may not have before…even providing emotional support to your husband when you can.
My husband owns his own business, so I totally understand the “work all hours God sends” issue, as $ are sporadic – Ian works probably 80 hrs a week. For us, we ended up having to completely change our lifestyle, and I definitely want to vent from time to time, when I think about what I have “missed out on” in terms of comparing with my colleagues.
On the other hand, I have a beautiful son, a husband who adores me, and like yours, says “you didn’t ask to get sick”, and a house that we can afford and I don’t need new clothes or a new car, or anything, really.
But, my point is similar to Deans, but from a slightly different perspective. Could your husband work only 6 days a week instead of 7 (or something)?
He needs rest, in order to be totally on top of life — if he doesn’t get abit of down time, that is when accidents happen. You guys are lucky that it was only a warning.
Maybe there is room to change in your life just abit more…to give him a few hours a week that he can recharge his batteries? If your hub gets sick, then what happens?
Ian (my hub) tries to burn candles at both ends, and at his advanced age (he just had a birthday that starts with a 5!) he can’t do it anymore. If it is just a hump, then maybe you can tough it out, but it doesn’t seem sustainable for the long term….
Obviously I don’t know a thing about your situation, and I am not trying to tell you how to live. I hope that you take these comments as the support it is intended to be — I TOTALLY understand where you are coming from.
With hugs (happy to chat more on PM if you want)
AnonymousOctober 1, 2008 at 3:27 pm
Deb, Your “feeling guilty” is a natural consequence of being on the receiving end of the team. Fortunately for me I was on the receiving end for a few weeks and my wife even had to deal with a “dirty” bed pan. I thought I would die before I even let that happen. She dealt with that and everything else like the priceless woman she is.
Now it’s her with CIDP that is progressively taking over and she has expressed guilt. Since I have been there I can understand that, so I remind her of the bed pan. She said that was nothing to which I reply neither is this.
So please understand yourself and try not to dwell on it. You cannot rationalize guilt away and just “get over it”, but recognize that it is a feeling and feelings themselves are neither right nor wrong. I translated mine into a deeper love and tenderness toward my spouse as a positive thing. I wish the same for you.
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AnonymousFebruary 8, 2008 at 4:40 pm
[SIZE=4][COLOR=Indigo]Does anyone else find themselves feeling guilty for having to lie down so much? I feel like my spouse is going to get so bored with me always not feeling well. I am needing so much rest that I feel unproductive, uninteresting and boring. Today my spouse took the day off and is at the gym right now while I am on the couch nursing an oncoming sinus infection. I am dizzy and my head feels like it weighs a hundred pounds. I went to bed early last night in the hopes that I would sleep through the night and be able to get up at a decent hour and function but I ended up sleeping late and waking up with this terrible head thing. I just wondered if others feel guilty about all this health crap. Thanks for listening.
February 8, 2008 at 5:51 pm
Kevin does, he always tells me it isn’t fair that I have to do so much for him and always take care of him, during infusion, making up home work etc. I always tell him I love him and it’s my job. I also tell him that if there is a time I am not able to do something for him he has to understand. He says ok. He also feels guilty that his brother has to make up for things he can’t do, that really bugs him. So far my older son Nick has been awesome, and I try to supplement to him in ohter ways for the things he has to give up.
So, I guess I am saying, from the care giver perspective, communicate to your husband that you REALLY do want him to tell you when things are getting to be too hard on him. Tell him to communicate when he has had enough. Showing that you RESPECT that he has limits too will go miles.
Now that Kevin trusts me to tell him when I can’t do something, he is a little less stressed. He now knows that he does not have to worry about drainiig me physically or mentally, because I will let him know. So when I do things, or listen it is because I love him and want to and am able to.
Since your husband has been there for you, it shows his love for you, when you love people, you WANT to help them. Unless he tells you otherwise, I wouldn’t worry about feeling guilty as long as the communication is open. Sit back, relax, and enjoy the pampering. I am sure you can think of special things to show him your appreciation. Little notes slipped in his wallet, cards, letters, cookies (store bought put on a plate of course, its the thought that counts) Those little things go miles. Smiles, hugs, those are the best things I get from Kevie!
Have a great weekend!
Dawn Kevies mom
AnonymousFebruary 8, 2008 at 6:01 pm
Guilt was/is definitely one of the most powerful things that i feel when I’m having my bad weeks. It is exactly as you described, guilt at lying down because I just cant carry on any more. Guilt at not doing things with the family, and also the fact that my hubby didnt sign up for this and guilty at not being fair to him because of it ….. . lt I found that often that guilt would transfer to anger and then I would take it out on the hubby and kids – almost trying to turn the tables.
AnonymousFebruary 8, 2008 at 8:43 pm
I wish that my husband would learn that everything does not have to be done each day! I don’t want pampered, but do need assistance at times. I do my best work in the afternoon and evenings. I like to get on the computer the last thing at night while I wind down. When I go for the keyboard I don’t want to sleep but I am starting to shut down mentally so that energy does not keep me awake. He comes home from work and before dinner he does my chores that sometimes I have done already. He should have noticed but does not. I get tired of telling him I did that already. Or I feel he should have noticed it was done, so am I doing that bad of a job? It was not up to his standards? It took over my jobs and also continued to do his. Now after I have told him to back off and let me do this or that he is getting better but still goes into compulsive behavior at times. I will be watching the news or on the phone. He runs the sweeper that time. I get frustrated because it is like I am not even there! I would never run the sweeper while he was sleeping, watching the tv or on the phone especially. I plan my trips to the grocery store and he runs out and gets half of what is needed. He means well and I usually let things go and work around his actions. I will let him do the dishes but he will never wipe down the cabinets or counter tops. I have asked him to work with me around the house doing things I can not do. I only asked for just 15 minutes a day. He said he would, but that has not happened yet. His garage is a mess and so is the basement after we had to move everything to the center so they could put in drains around the footer. He still has not put that stuff back where it belongs. I am not sure how to get him to stop doing my chores. I wish he would give me back my life and make me feel wanted. Doing all this stuff for me is not helping. It is frustrating and actually depressing. Things never had to be perfect around here before I got GBS and they never were. I could always find something to do and had a list for the next day in mind. He reminds me of the pink rabbit with the right kind of batteries. I just fear that he will have another stroke or wear himself down that he will start to have health issues. I think it is all about keeping the communications open. I am thinking about making a schedule that shows that I do laundry on Friday that I don’t want it done on Wednesday or Thursday. That way he can see I have not forgotten about it. I had the towels on my list to do tomorrow and there is no reason to stay up till 1:30 A.M. doing a load of towels. I know this has to be how he is dealing with stress too. Do I let him do that and cause more stress for me? I guess it is time to have another discussion and tell him what jobs I want to take back as my chores. I might add a Honey Do list to the refrigerator of the things I am not able to do yet too! If I find something that works I will let you all know. Yes, I think being ill this long is frustrating and depressing. I think guilt is a big part from the very beginning besides having to give up alot of privacy. I miss that. Don’t be too hard on yourselves!
AnonymousFebruary 8, 2008 at 9:00 pm
Hmm, Kit, does your husband have a twin?? I believe he lives at my house!! Wipe off counter tops and the sink ~ not part of doing the dishes. Vacuum while I’m on the phone ~ part of the job. OK, you get the drift. Since we can’t do it our self now, it’s glaring in our face. Then I get so angry at myself for not getting off my butt and just doing it 😡 Sometimes the formerly “little differences” between my husband and I are exacerbated with the flare-up of residuals.
I think the whole picture is a combination of grief and guilt. There are days when I just want to “give up and give in” ’cause this has gone on for to long . . . And then I remember my GBS family and say a prayer of thanks, knowing that I can log-in and someone will “really” understand! To all my Friends, I thank you 🙂
AnonymousFebruary 8, 2008 at 9:14 pm
Judi it is not genetic….he has two brothers and they are bums! LOL I got the keeper! I just don’t like the guilt I feel when I can not help. We used to work alot together on projects but now we don’t seem to have anything in common other than my GBS and its care! I have accepted this lifestyle for now and see little changed happening. Just not fast enough and I have learned to have patience. I know it is not my fault. I have good days and lazy days. I still work on things even if I am not running around the house like a drawer or box of old recipes. I do quiet things. I used to do everything in the house so I think that is why I do get so frustrated. When I was done in the house I used to go outdoors in the garden and yard. I used to tease him that all he did was put the trash to the curb once a week and mow the lawn. But I can tell you that RESTing when necessary has really helped me get thru all this. It is just SLOW! I know everyone said it was slow but I just did not know what they meant by SLOW!
AnonymousFebruary 9, 2008 at 6:13 am
You know I can suffer through the nerve pain, the constant spasms, the constant fatigue etc. without getting too depressed but when I see how hard my husband works to keep our house and life in order the guilt just kills me. We have worked out a partnership – he carries all the laundry up and down the stairs, I wash it, fold it and put it away – he does the dishes but, of course, I do the counters etc. And we have more or less worked out our feelings on what is really necessary and what can be ignored – I can’t imagine the size of the dust bunnies under the furniture now but it’s just not worth the extra effort to move them out of the way more than once a year or so.
The guilt is hard, possibly harder than the disease, but open communication has been the key for me – if I bottle up my guilt it tends to fester and spread to other things I have no business feeling guilty about. I tell my husband when I’m feeling guilty and I usually get a response like “you’d do the same for me” which I would if the roles were reversed and that makes me feel a little better.
AnonymousFebruary 9, 2008 at 9:37 am
the guilt is huge on my end. I’m not home much right now and that makes it even worse. My husband is very good to me and I am lucky.
I think the best thing you can do is talk to your partner about how you feel.
I dont know how to overcome the guilt even when we’re told “dont worry, you’d do it for me”…it does make me feel better but doesnt take it away.
But, I do thinking talking about it helps.
hang in there…
AnonymousFebruary 9, 2008 at 11:44 am
Wow, everything I’m feeling right here in the posts! I didn’t realize what a “keeper” I had in my husband of almost 30 years until I got sick. He’s been doing the laundry and the dishes and the snow removal and the yard work, etc., not exactly the way I do it but who cares it’s done. I’ve asked him to bring up the dried clothes up from basemwent so that I can fold them and feel useful. Sometimes he does, sometimes he doesn’t. I do make dinner (and I hate to cook but it makes me feel like I’m contributing), I’m pooped out by the time it’s ready. I made one of Rachael Ray’s 30 Minute meals…it took me an hour and a half :rolleyes: I guess it’s alright to feel guilty from time to time, but let the people who love you help. I know they feel bad because they can’t help you get better, they can’t fix you. Atleast they can make you comfortable by giving some TLC now and then. Best Wishes to everyone, keep fighting!
AnonymousFebruary 9, 2008 at 4:33 pm
Smiley I am glad you mentioned they don’t do the chores the way I did! A friend of ours always told us how to deal with that in this way. [B]A hundred years from now who is going to know?[/B] So now as a reminder of his motto, I just look at my hubby and quote the neighbor. He says it is better than being down on myself all the time and it does not put a guilt trip on either one of us for not getting it done today! I used to always say I am here to keep the health department away. Well lets just say I hope they don’t look under the heavy stuff. Stove, refrig, beds and that darn couch. My other friend told me to use low watt light bulbs. I like that method too! I never asked for help cleaning my house….never did and never hope to have to. But I always have that option to call in some of the offers! Before GBS I was visiting [url]www.flylady.net[/url] to helpl get organized and to see how others felt about housework. It might be a help to others that are not able to do as much as they want. There is a calendar there I try to follow as a suggestion to what gets done this week and where I can concentrate next week. It keeps me sane but on a schedule that gets it done once a month. I am not totally organized but I figure they are working in a good body. Mine is in need of repair. I am like an old car. I will get you there but not in record time. I love the food channel it has given me more ideas to make meals since I have this extra time to plan. Hubby is reaping the benefits. I agree that it takes me longer than it does Rachael Ray! I just have learned to laugh at myself…..crying uses up too many Kleenex! Sounds like you have learned to live life with a smile too!
AnonymousFebruary 10, 2008 at 1:40 am
[COLOR=Navy][SIZE=4]good to know i am not alone. i really am very lucky.I don’t have to worry about much. My spouse is kind,loving,understanding and generous. Never complains and allows me to do whatever i need to do. I rested all weekend while she cooked and shopped. I have nothing to complain about. Thanks for all your perspectives.
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