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Hi All
I have not posted on here for a while, although I often read the other postings. Anyway, I wanted to know how other people cope with Guilt?? Is it just me??
I was dx with Lupus about 3 years ago (also Coeliacs, but that is well under control by diet). The Lupus was mild for the first couple of years, and did not affect me too badly, so I was able to carry on as "normal".
However, things started to get worse over the last year - the fatigue increased, as did the aches and pains, and the depression. My rheumy increased my Plaquenil, and also recommended Flouroxetine (anti depressants). I go back to see her in November.
Where the guilt comes in is because the fatigue is so bad now, and I feel shattered. I read something today about women being Gold Medal Olympiads in guilt, because of juggling home and work, so add Lupus to that equation (and a catholic upbringing - lol) and you will see where I am coming from.
I work 30 hrs a week (Managing Home Care for the Elderly - which is stressful), and am the main wage earner. I have one teenager, and a great (and understanding) hubby.
I feel as if I use all my energy to do my job, and then as soon as I come home (or am on a day off) I feel as if someone has "switched me off" and I am shattered, with no energy to do much at home, and then I feel guilty because I can not do as much as I used to. My own worst enemy - I know!!
My hubby says it is fine, and does loads to let me rest.
I wish I could be kind to myself and stop feeling so guilty - any ideas or kind thoughts much appreciated.
Thanks for reading this as I think I have gone on a bit, but I wanted to give the full picture, and see what any one else thought.
Love and hugs to any one reading this
Mary
 

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Hi MaryBeth,

Nice to meet you.

I'm sorry that you are struggling with fatigue. I think that is something we can all identify with. You are not alone, and it is one of the areas that medical science has so far had very little to offer us.

You need to rest regularly, and to include in your daily activities as much stuff as possible that makes you feel good. So little treats, a walk outside, a visit or a phone call with a friend etc are all more important that the washing or the vacuum cleaner.

You are lucky (well actually I think it shows you have good taste and judgement) to have an understanding husband who doesn't expect a perfect house and who helps out. I do too, and it sure makes a big difference:blush:. Be glad of it, and accept his offers with gratitude and relief.

I'm sure you know this, but guilt is just a waste of your energy. You don't need to feel guilty about something that is outside of your control. Your hubby doesn't expect this of you (and your child probably also not?), so try to be kind to yourself.

It is probably a good thing that you have accepted the fluoxetine therapy. A lot of us experience depression as a result of this disease, and treating it effectively is important. I find the fluoxeting makes a big difference to my daily coping, meaning I am overwhelmed much less frequently by the struggles daily life with a chronic illness brings.

hang in there and feel free to rant to us.

X C X
 

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I felt much like you during my last year of work when my health took a serious dive and I had a 1 year old at home that only wanted mommy to help her learn to walk, etc. I also have a very supportive and understanding hubby that does everything he can to make me feel comfortable, happy, safe, etc.

What I ended up having to do was stop work and go on disability. Then we hired house cleaners. ;) Dear daughter is slowly growing up and becoming more independent, and is learning to enjoy helping as well. There are advantages to illness in that regard of my daughter learned some positive things from it - as well as disadvantages.

Another thing I did was seek out help from a cognitive behavioral therapist. It was very good to learn how my thoughts/beliefs affected my mood/outlook and many other things. And then you learn how to change it and how to think in a different way. I would strongly recommend that therapy as an adjunct to your antidepressant. The energy being used up by guilt can be better used elsewhere, but you may need to learn some new thought patterns as well as a little time for the antidepressant to work.

Good luck with all this, I remember all too well how difficult things are when you're in that moment. (((hugs)))
 

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Hi Mary,
I thought I was the "queen" of guilt. I think as women in general we all suffer from some form of guilt, but add on the pressures of having a life threatening illness, and it doubles. I work 3-4 days a week, have grown children out of the house and a husband who works. I don't get around to most of the chores I should because of fatigue. I just don't have the energy. I have tried over the last few months to ease up on myself, because I realized (finally after 19 years of this) that if I add on the stress of worrying and feeling guilty, that I am doing myself, and my family, harm. I heard once that guilt is a useless emotion, and I believe that in our case, it is not only useless but very harmful. I hope this helps. I know people can give you advice and suggestions, but you need to make the decision yourself. Take care of yourself, you deserve it!

Angie
 

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Hi Mary,

First of all my heart goes out to you with this. I think as women, we put a lot of demands on ourselves and as a result when we do not live up to our own expectations then we feel guilty.

I went through this too and I went to talk with someone about it. I could not handle my own negative feelings about my sense of worth. Therapy helped me tremendously along with prescription medicine for fatigue. (Provigil)

My husband, like yours is very supportive and I realized that I was doing this to myself. I am very "A" type personality and everything just had to be perfect.

Through talking with someone I realized that everything does not need to be perfect and other people in my life, even though they can't see Lupus really do understand.

I took the demands off myself and am now much better off. I do what I can and what I can't will just have to wait. I hope you work this out and feel better.:wink2::wink2::wink2:
 
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