My kids first words of the day are... do you feel good today?
Plans are never made cuz they never know how I am going to feel.
I pray they will grow up knowing Mommy tried the best she could despite the lyme.
So far... I think they'll be okay
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
They'll be OK. My mother was ill when I was young [Lyme]...but we didn't know she had Lyme. My dad and I also were ill, but we didn't know any of us had Lyme.
I remember many nights where my mom couldn't get out of bed and we had to wash dishes, etc. I think she managed to cook and then would go to bed.
I remember it as being a sad time, but there were plenty of happy times too. We were all loved and all three of us came out pretty good. [I think!! ]
Love covers all.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
This is one of the things that botheres me the most. I try so hard to hide how much pain I'm in but they know and worry. I always go upstairs to say goodnight and they started saying you don't have to come up if you're hurting. Then I go upstairs if I have to crawl. (and I have) Kids are more in touch than we think I've had to sit down and talk to them about the good the bad and the ugly of this disese. They seem better knowing more than being kept in the dark
Posts: 111 | From Pa | Registered: Oct 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Very painful subject.
I've been sick 3 1/2 years, was practically a workaholic before then; worked a lot, vacationed, did activities; now I am bedbound.
Mine are 18 and 12. My 18 year old seems pretty much shut down and I don't know what to do about it. My 12 year old was avoiding me for the past year and finally the ice was broken.
He told me he tries to avoid seeing that I'm sick, and in his words, "If I think about it too much I will feel like there's something I could have done. Then I will just go into a corner and never come out."
So he avoided me. Now that we got that out in the open, he is so much better. It all started with a school paper when he wrote that his biggest fear was losing his family. My husband and I are both sick, 18 year old off and on.
I am not having much success with my older son. He stays in his room and just won't talk to me. If I go up there he kicks me out. Some days are better, and I'll keep trying.
Yesterday my 12 year old asked why we couldn't go to the movies like "normal families", why did it always have to be a movie and laying in bed?
I have no doubt there has been a huge negative impact on my kids. We are broke, they worry about our electricity getting shut off. I have not cooked dinner in over a year, they fend for themselves with cereal or mac and cheese. The entire house is a disaster.
I see how sad my kids are. They are anxious we are going to die. Their lives have changed dramatically.
I can only hope I will get better before they are gone. I keep telling them I will be better, that it won't always be like this.
I feel your pain. My heart aches for my children, especially when I can't reach them.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
fan,
your story touched me so much as well as the others.
I was just thinking of my late sister, Marilyn, who died at 41, of breast cancer in liver. She was 32 when 1st diagnosed, lost her breast, went thru chemo and radiation; cancer-free!
Her daughter was 2 and son 6 at the time. When talking to her before sis died, she commented to me, "Mom's been sick all my life"!
At Sunday school, their teacher had them each recite a Bible verse, and then my dear niece said this, "MOM, YOU TOOK CARE OF ME WHEN I WAS SICK; NOW, I'M GOING TO TAKE CARE OF YOU!
words from a 11 year old girl who learned to DRIVE also so if Mom couldn't drive; she'd get her to hospital!
They also need folks to express their thoughts/feelings to without burdening you more.
Best wishes to ALL OF YOU getting thru this. +++++++++++++++++++++++++++++++++++++++++++
One thing my niece and I discussed was starting HAPPY MEMORIES PAGES ... write down these good thoughts while they are fresh. As my sis has been gone 8.5 years now, the memories fade.
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
This is a touching thread. My kids worry about me, too.
My youngest is 4 and has congenital Lyme (currently in remission, thank God!).
He always tells me he wishes that tick hadn't got me. He calls me his "precious princess" and tells me he loves me "sooo much".
My older son is very clingy. He is 7 and he wants to sleep with me each night. I let both him and his brother sleep with me, partly for selfish reasons. It seems like it's the only time I get to be with them most days.
I don't care about cultural norms at this point. I just want to be with my guys. How I love them and wish I could give them more.
I have had to cancel plans for them so many times! Swimming lessons? Canceled. Piano lessons? Ditto.
Vacations? Not without a lot of help! (thanks, Kathy and Kate!).
I like winter because the kids are inclined to stay inside. How I worry when summer comes and they're off to play on their bikes and I'm stuck in my room hoping they're not getting hurt and that Daddy is keeping up with them!
And how I miss my oldest son. He's severely mentally disabled and I had to let him move to a new home, 30 miles from me.
Wait, what's that I hear? My husband is home, bringing my oldest and youngest with him, and all five of us are together for 2 whole days!
Have a great weekend, my friends!
- Lymelady Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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