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May 29, 2016 8:04 PM

Being fatigued is no joke. My kids' nanny showed up an hour later than I thought, and I couldn't manage through that extra hour. I was still asleep unable to move, lying on the couch, neglecting my kids. It took me two more hours of resting to get the energy to get up. I know for some people that is still a good day, but the mom guilt for me today is high. Every day is a struggle for pain and fatigue, and today I feel more disabled than usual because I keep thinking I shouldn't need help.

May 29, 2016 11:36 PM

Mommy guilt is the worst kind of guilt. Your story rings true to me. I can't count the number of times I've said, "I'm sorry, but I have to go to sleep right now." And I mean right that minute. It's not a choice for me. I'm slowly learning to accept and even ask for help. I pay someone to clean for me, I tell people 'no' now, I do not volunteer at the school. My doctor gave me some advice that I've been trying to heed. He told me that I need to accept that I am no longer who I used to be. He said, "Wether you look like it or not, you are a sick person. You need to build your life in a way that supports your best possible success. And then you need to stop trying to be exceptional and start striving to be mediocre." His point was that by holding onto the belief that I should still be doing everything I used to, I was only creating stress and increasing my own illness. I've been striving for mediocrity for a while now. It helps....but I still have some really hard days. Hang in there.

May 29, 2016 11:58 PM

Thank you. You're right. I have to reset my expectations for myself. My youngest is starting school in a month but I will have to keep a nanny at home to help me. I can't do the stuff around the house without causing a flare nor can I go to the market or run errands unless it's a drive-thru. I have been working towards an expectation of being able to do those things "when I had more time". My body hasn't been able to rise to the challenge. My joints are weak, painful, and I am sick. I feel trapped in this illness but am working on separating the illness from my soul, not letting it color my chance to be a beautiful person. Feeling understood helps so much. Thank you!

May 30, 2016 11:46 AM

I struggle daily with fatigue and I barley held on, on the day's I had to volunteer at the school, by the time I came home I was so exhausted I crashed into the bed and out like a light. Now that it's summer my body is in worse fatigue mode then ever and it's all I can do to stay awake.

May 30, 2016 3:18 PM

@ FatigueFighter, bravo! The way you described the acceptance of the changes in our lives could not have between said any better!

I use to be a type A person, striving for the best perfection, and expecting it from others. Now I'm happy with any one thing I can achieve in a day. Recuperating from surgery on Thursday,& being on a very restricted diet I am fighting fatigue more. Today I gave in and napped. But I've been fighting fatigue since 2007 when my fibro symptoms began. I listen to my body and refuse to feel guilty if I must nap, or ride a cart, or not cook super. It's also taken me 7 years to come to terms with my health and be at peace with decisions that are best for me. Hugs & prayers for everyone to do their best to cope without dwelling guilty. 🙂💕🙏🌼

Jun 01, 2016 1:14 PM

Flappsy, I hope that you're coming along in healing like the doctor thinks you should be. Actually the way You think you should be. I'm having trouble resting at all because I'm going to be watching my 99 year old Godfather while his family goes to NC for a graduation. The problem is in the last 3 days he's declined terribly and is dying. I'm scared to death that I'm going to be the one who finds him dead. I also have to go over several times a day. I have to make sure he takes his meds, he's not really eating or hydrating so that's going to be tough. I'm scared and my anxiety is overdrive. I won't back out on my word, I had already told her not to worry that I'd look after him but now it's different because he has taken this sudden turn. I feel badly for him. He's tired and he wants to go. I think he's just giving in at this point.😢

Jun 01, 2016 7:09 PM

AlwayZ, I'm doing pretty good. Still on mostly liquids. I'm so sorry to hear your fear of finding your neighbor. Does the family not have social services or Hospice coming in? I stood by my mom's bedside as she took her last breath, locking eyes with mine, as I told her to let go. It was in 1999 and I think that image is forever burned in my mind. My sister found her hubby dead in the bed, and she says the same of it. I hope and pray your neighbor will hold out until the family comes home. Hugs!! 🙂💕🙏🌼

Jun 01, 2016 7:47 PM

Me too. Gosh, I could not do it. I am not even able to do what I need to do here at home. It is a Herulean effort for you to do all of this with you pain. Take care. Sending positive vibrations to you & that poor man.

Jun 01, 2016 10:47 PM

Flappys glad to hear that you are healing up nicely!😘

Alwayz, I know that feeling all to well having gone through that situation once with my father in law and the at the nursing home to check on my Aunt while in respite care. It's something that sticks with you for the rest of your life. I worry about my Aunt who is taking care of my Uncle in Hospice care now, I worry how she is going to hold up after finding my Uncle after he has passed. I'll be praying for you Alwayz and if you like talking please don't hesitate, talking about it may help your anxiety I'm here for you. I've found that I can talk to you all so much easier than my family and I am sure it is true for some of you. My email is mvp197889@gmail.com

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