I just need to vent and as most of you know, no one can understand unless you have this disease. My children are on spring break and my husband took vacation so we could have a good week together. He even took a week off from church. (He is a bi-vocational pastor) We left Sunday to stay with family for a few days and they had made awesome plans for us. Although after the four hour drive I was in misery, I managed to put on my fake smile. 24 hours later we were headed home because my cousin's kids had thrown up all night! We wanted to be home if the virus hit us! We did some shopping on our way home and have enjoyed being together. Today we took our kids and their friends to a movie and shopping. Before we ever got there my wrists and legs starting hurting so bad I almost couldn't hold back the tears. Then on the way home there was a phone call which put a lot of stress on my husband (church stuff) which raised my stress level and pain level. I finally couldn't hold back the tears. As they left for church tonight (yes he had to go even though he's supposed to be on vacation), my 10 year old said "Mom I left you a note in your bedroom. And your room was messy." When I went to get the note she had made my bed and the note said "I made your bed for you. I love you.". It broke my heart that she worries about me and she's 10. Suddenly I felt like I was 12. My dad was sick from the time I was 12 until he died when I was 22. (Kidney disease) I remember being worried about him all the time. And I became a person who worries a lot. I do not want to put that on my daughter! I want all my children to love life and live it! But I don't know how to hide the pain. I push myself to do a lot of things I don't feel like to have these memories with them. I'm just frustrated at what this is doing to the rest of my family. Thanks for being a place I can write down all the crazy feelings!
Hi Kel, wow, it is amazing all that you have done this week with your family and you should be proud! I understand being worried about how this effects kids / family. My mom was sick (cancer) from the time I was 11 until she died when I was 18 - there were some good periods of health in there I should mention. I also have a daughter who is 10 - although unfortunately mine would never make my bed for me willingly . . . you've done something right :-). I think kids are more resilient than we give them credit for. I also think this teaches them how to be more compassionate people and to look beyond the surface at things. I sometimes can't hide the pain either but my daughter and I are learning it is ok now and then to just have a cry-fest and then we feel better, at least emotionally. Please feel free to come here and express whenever you need, this is what we are here for. I am sending you big hugs!!
Hello Kel,
I absolutely agree with Aubunm. You are doing your best for your family, you can do no more. Also I am sure your family love to help you - you're their Mum. If you can,don't be so hard on yourself, and of course feel free to vent on here!
Take care, Anne
Yes, It’s sad but true what we think we have to do for the sake of our family. We don’t want to bring them down. My mother was sick all the time she had a nervous break down when I was in second grade, and she was a hypocondriac. My siblings and I were so scared all the time because of the way my mother acted around us. I didn’t want to do that with my family. I find myself in the same boat sometimes, being sick all the time (not mentally, like she was) but I am on medication for depression. She was diagnosed with bipolar later on in life.
Right now it’s just me and my husband at home, my youngest son (Max) just passed away in 2013. I miss him so much. And my older son (Chris) moved to Hawaii right before Max died. He had to fly home for the funeral. We did get to visit the last two Christmases, because I refused to have Christmas without both my boys. So that was actually nice, to be able to go to Hawaii.
Right now, I’m struggling with the guilt of how much time I spend in my bedroom when my husband is home. I get up super early and get him his breakfast, pack a lunch and make him coffee. Then at night I try to make his dinner, but I don’t always manage that. He’s good about that, he’ll get something for himself or bring something home. I always get all my housework done in the morning, I really push myself, then I lay down about 2-3 pm and once I lay down, I can’t get up, I have so much pain and fatigue. And I usually hang out in my bedroom in bed. That’s where I feel most comfortable. But I feel guilty when I don’t sit out in the living room with my husband. I do this on weekends too. He has been wanting to go to the movies, and I always tell him I will if I feel up to it. Then I always have to tell him in the afternoon that I just can’t do it. He’s really good about it but he also will go out to the local bar and hang out with friends. It just seems so dis functional sometimes. Does anyone else have to lay in bed to feel comfortable?
I worry about that too, that this will affect my children too much and I do not want our memories to be tied tot he fact that mom couldn't do things because she was feeling to bad. My son has even began use my fibro in his advantage, which was kind of cute but still very alarming at the same time. We were in FL few days ago and since we weren't in our house he was having trouble falling asleep. He came back to the living room and asked me when I would be coming to bed and didn't like the answer that it would be some time. He was quick to reply with: Mom, but you have fibro and really need to sleep more and relax.
It’s interesting how families adapt/struggle with this disease. My husband is so loving and supportive. My 11 year old, very understanding. My 15 year old tells others I am lazy, am a hypocrite because I don’t do the things I “should .” How am I supposed to explain the pain and fatigue to the adolescent brain? My heart hurts and I feel like she hates me.
Denise, Don't worry about trying to explain it to your 15 year old, not going to happen. Yes at the moment she doesn't hate you, not because of what you can our can't do, but because her whole life is a confused mess and she needs something to blame. She would hate you even if you were the perfect parent, she is a 15 year old girl, it is her duty to drive you crazy and make you feel guilty. You have a debilitating illness and you are already feeling guilty so her normal antics are making it worse. Forgive yourself, you are doing the best you can, that is all any of its can do. She might surprise you in a few years.
Thanks for the pep talk. Just what I needed!