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Blond-e
04-04-2005, 11:18 PM
Hi Melody,

Thank you for your response to my post! Yes, I have to agree with you, I too, feel very tired and inadequate almost always. Some days I can't even make it out of bed. Those are the toughest days, emotionally. Then there are days that I make it out of bed, but stay in PJ's all day and don't get anything done around the house because I'm so tired, stiff and sore... those days are hard too. I must admit, I am truly "guilt-ridden" at times. I feel so guilty for not "doing the laundry" or "making dinner" or "vacuuming" etc. etc. etc. Sometimes it goes on for days that I don't do these things and I always feel like my husband is upset that he married me. Sad to say, but it's true, I feel this way. I guess it would help to talk with him about it but think I don't ever bring it up because I am truly afraid of what he would say!!! I have to keep telling myself that tomorrow will be better... sometimes it works. My outside face is very positive, on the inside though, I'm exhausted. People always say they admire how I've handled having a chronic illness and that they could never do it... but really, I'm not handling it like they think I am. I just continue to put on my outside face and be positive about it all when I'm with friends and family. Little do they know I'm withering away inside. Sheesh! I sound like a battered woman! I'm SO not!!!! Just a guilt-ridden Lupie!

Walk a mile... before you judge ... in my shoes. Is what I say to those who disregard Lupus as a debilitating illness. You're so right to say that we deserve to moan and groan once in a while! We feel pain everyday, why not add a little whine to that! LOL!

Thanks for listening to me vent. Look forward to hearing back from you!

Saysusie
04-05-2005, 06:52 PM
Hi Blond-e;
The fatigue can be absolutely debilitating and no one seems to understand it but us. I, too, go through the guilt feelings as I am lying on the couch in my pajamas thinking, "I should dust the furniture, I should fold the clothes, I should clean the bathroom". So, I give in to my guilt and get up (with all the aches and pains and fatigue) and try to do something. The end result: I am 10 times more fatigued and oh God do I hurt. So, I end up flat on my back for days afterwards.
For me, I found it so much easier to get rid of my brave face and just come right out and tell everyone exactly how I am feeling: how I hurt, how I am so tired that I cannot move. How I HATE BEING THIS WAY>>>BUT HERE I AM!!! How, this is not something that I asked for, but it is what I've got! Finally, that they MUST understand that I am not lazy, I am not faking and that I'd love to be super-mom, super-wife, and super-friend...but I just can't.
Surprisingly...almost everyone understood and it alleviated a lot of guilt on my part and resentment on their part. This may not work for everyone, but give it some thought. Sometimes you'd be surprised how understanding and supportive your loved ones can be if they only have the information and know the facts!!
I wish you the very best...stay in touch...we are here for you!!
Saysusie