posted
Hello, I'm sick of being sick and watching my health decline. I know you all can relate to this in some form. However, for me, the real kicker is worrying about my ability to care for my to daughters. They are my world and I can't help but be distraught about my future and how it's effective them. I cry myself to sleep worrying about them. Unfortunately my wife is not supportive of my condition. I barely make through work each day, but I also know that I have no choice, but to support my family. I will continue to push myself until I can push no more, and then I will push more. Does anyone have any advice for a parent trying to do their best for their children and focus on treatment. Anything would be appreciated. I do thank god everyday that it is me and not my children. Any advice? Thank you!!!
Posts: 108 | From Connecticut | Registered: Jun 2010
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Dear climber,
I had a big spill here for you and lost it...let me see if I can remember what I wrote.
You need to pat yourself on the shoulder for being able to work and support your family with lyme, this in it's self is a big challenge.
you are sick with a disease, your children will understand. On the days that grace gives you some spare energy; then devote that time to your children.
In the mean time you must take care of you and your treatment. One day it will be better. I'm sure the girls know there daddy loves them.
Your wife... I do not have an answer for support. Just don't allow her to bring down your spirit. You need all the positive energy to help beat this disease. Now if you are going to cry yourself to sleep, then for goodness sakes make sure there are some tears for you also. I am very sorry you are going through this.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Don't try to do it all yourself. Get a group of friends to help, if you can. Create a village of sorts. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I spent most of the last year on my couch, with some foreign monster sucking out all my energy out of me.
I spoke with a particular friend on the phone a few times and each time she said, "Don't you feel guilty that you are missing your kid's whole school year? Your son only has two years left at home with you and your daughter needs you."
The first time or two, it took me by such surprise. At first I felt hurt, misunderstood, and then I got just plain mad.
No, I don't feel guilty. I'm doing the best I can. I am not missing their year. I'm right here, loving the just the same from the couch.
My advice? Do the best you can, take care of yourself, get treatment, love your kids in the way you can this year (it won't always be like this and they do know you love them), and don't let people bring you down. You can't afford to get down, you need to get thru the day. Oh, and the biggy? Pray! Pray for help, for mercy, for health, for stamina, for guidance, and thank the Lord for every day you get thru.
Praying for you, Climber, that you, and the rest of us, conquer the mountain!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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massman
Unregistered
posted
See if you can find a good support group in your area, you may be able to trade some services with them, have their kids play with yours etc.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- An idea for the living, too. I don't get CNN but the video clip was very nice. Good idea for all families - for that Village atmosphere.
VIDEO CLIP and ARTICLE here: program on CNN this weekend.
Editor's note: Imagine being a father and finding out you were going to die. Who would be there for your kids?
Hear from one man who thought only of his daughters when he was faced with the news. Watch "Dads for My Daughters," a special Dr. Sanjay Gupta documentary to air June 19 and 20 at 8 p.m. ET on CNN.
==================
Also remember that you don't have to be perfect, or even healthy, to be a good parent. It's the heart connection, they eye-contact, the cuddling and the interest that matters. If you instill in them a sense of wonder and delight about the world, that will nurture them beyond belief.
The better you manage your health concerns, they will know how important it is to take care of themselves. They will know it's not only okay to ask for help or create a healing circle of helpers and those who offer soul connections but that it's the WISE thing to do. It just makes sense.
They will become better managers and problem solvers when faced with difficult circumstances. They will become integral members of one circle or another throughout their lives. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
All I can say is thank you! I do pray every night and throughout the day. Your kind words and advice melts my heart, and for that I am thankful. I will continue to do my best. One thing that has not changed is that i am truly thankful for the gift of the day. Even when I know that things are going to be difficult, I am still thankful for life. I will do my best to create a village and it's developing right here. Thank you! Climber
Posts: 108 | From Connecticut | Registered: Jun 2010
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posted
My kids all under age 10 have learned to be sensitive, compassionate and patient.
I don't know how they would be if I was bursting with energy and running around doing at the extra curricular stuff.
I don't think they would have loved me less or thought I was a bad Mom if I couldn't do all the things they wanted to do with me. They can just tell when Mom needs some quite and rest, (which was a lot when they were really little and I was so ill.
I'm sure depending on the age of your girls they will totally understand that Daddy needs to get better.
I know it's different being a Dad that you have to provide for them is a big responsibilty.
I will pray you are able to provide for your family.
-------------------- 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
My mother was sick a lot while I was growing up (probably Lyme)... and things turned out just fine for her kids! We have all led successful and happy lives.
Yours will too!
oh.. and we were always devoted to her during her life. It was kinda rough on us at times, because my dad worked in the evenings... so we depended upon ourselves most evenings! Thankfully, this didn't happen to her/us until I was about 10 yrs old.. my brothers were older than me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I hear the heartache in your message, climber, and am very touched by it.
You are working really hard as it is and I can't imagine how it must be to barely get through your work day and then want so much to care for your daughters, but have so little to give.
I should start by saying that I am not a parent (hope to be one day), so I don't have that background to speak to, but I feel like I relate to some degree in my feelings for my husband.
I know that by no stretch is it the same thing, but I often ache to want to be there for him in ways that I simply can't right now. I want to listen in a deep way, hold space, take care of things so that he won't have to, etc. All those things that I want to do so much, but simply don't have the energy for.
I am blessed with a wonderful caring husband who helps me a great deal and does me the great honor of being completely honest with me. And, yes, there are times when he wishes I could be there in a way that I can't or that I could make dinner when he's tired...but really, those times are a minority.
The thing he really wants is for me to be myself. By being me I give him more than I ever could by pretending to be something I'm not. And so we find ways to be together that are honest for both of us. Pretending or pushing to be something other than I am doesn't actually honor the relationship we have.
I don't know how old your daughters are, and I realize that the relationship between a father and child is hugely different than that between spouses. However, I wonder if on some level the greatest gift you could give them is to be yourself, and to cherish them in the ways you can, when you can. They'll feel the pure love you have for them. They'll feel how much you want to be there for them. And, they'll want you to get what you need for yourself.
What are the little things you CAN do, that still respect your energy, to give your love. As little as laying on the couch with them and touching their hair. Maybe having a small supply of cards available to you and giving them each a little note now and then that feels special.
As I'm writing this note I feel as though this may not be touching the deeper need you feel in yourself in the things you want to give them. But please, be kind to yourself. You are working hard!
Try and separate out those things you really wish you could give your daughters, and what those things are that they actually need. Perhaps those things they really need are still things you have to give after all -- simply being you and loving them!
Posts: 232 | From Oregon | Registered: May 2010
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
climber-
It really amazes me that anyone can work with this disease. The fact that you do is amazing. Be proud that you can do it. It must be so hard. I unfortunately am legally disabled. I am home all day and I have a hard time most of the time caring for my kiddos. I have a lot of help. Is there anyone that can help you out a little? A relative or friend?
I have had to lean on a lot of people during this crisis. Do you have anyone to lean on?
It must be difficult to be the person who is responsible for the financial wellbeing of your family. Wow.
I depend on my husband for alot. can you talk to your wife to see if she can be more understanding?
Just know that your children will love you no matter what.
Hugs to you.
(sorry this message is a little all over the place)
melissa
Posts: 3905 | From USA | Registered: May 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
climber-
My Mom was in the bed sick for a lot of my formative years. I knew she still loved me and I never felt neglected or uncared for.
Just do the best you can. That's all anyone can ask of you. Your children will adjust. It will help them to be more sensitive to others.
I loved getting to care of my Dad and cook for him. I felt all grown up when I had to do the laundry or keep the house running.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Remember to Smile
Unregistered
posted
quote:Originally posted by climber: They are my world
Happy Father's Day, Climber! You rock! You are the rock your daughters will remember for the rest of their lives.
Your love for them can be lavished & displayed. The healing beauty of your love for them will forever let each one know that a REAL MAN LOVES THEM.
With the power of your love in their hearts, your girls won't waste themselves on silly boys or useless endeavors. They already know what you've offered, and will someday have loving partners who honor & respect them, just like you do.
For you, Climber, live your favorite childhood memories by whispering them right into those little girl ears! What's the best part of Summer? Share your joys directly. In the retelling, you'll boost your own immunity.
I still recall the joy of listening to my Daddy make up stories for us. Best part was his intonations, the audible grin...
Another poster suggested writing little notes if you can. I cherish items i have now with my Dad's handwriting. I see all of him in a few lines.
Wanna ask them each to read to you on a regular basis? Teach them a card game or board game? Anyone up for chess?
Share yourself, and you'll heal. Be honest; they see more than you can imagine. Be willing to answer their questions about Lyme disease, and they'll be more confident and articulate with their peers.
Please be kind to you. When you breathe in fresh oxygen, it makes the 'chetes mad and brings more of the Universal Life Force into you. When you push, just push those pesky parasites right out of your pores.
Relax in the precious present. It's the greatest gift of all.
You don't have to be everything. You are already the best father in their world, no matter what.
God bless you & yours, again & again. We pray for all four of you. Amen. Smile
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, indeed. HAPPY FATHER'S DAY ! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hello, You all just gave me the second best Father's Day present any person could possibly receive. I'll admit, I teared up and could not read each word, because there was so much caring and connections in your words. My girls are two and four. This morning, they snuggled in my "nook" and to have my girls resting on my shoulders was the best gift of all!!! To you all: You may never know what all your kind words and support did for me. I can't begin to express what it means to have you all respond to my situation. Thank you for your prayers and understanding. I'll admit, I was totally overwhelmed. Climber
Posts: 108 | From Connecticut | Registered: Jun 2010
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Happy Fathers day Climber.
NOW you know the reason to get to the best LLMD you can and get well for your girls.
My kids mother walked out of their lives when they ranged from 4 to 18 years old. I think we had good days and bad,,,but cant remember any bad.
Sorry to hear of your wife's non support. Has she seen the movie "Under our Skin"??? Maybe she would come around if she did.
Otherwise maybe she isnt as committed as possible. Sorta like selective ear infunction.
You can only do what you can do. Some say day by day trying. I always just put one foot in front of the other. Left, right, left.
What type of work do you do,,Climber? I ask because someone may have specific help in that area. Use all of the tricks of the trade you can!!!
Happy Fathers Day Climber!!!being--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Hello- I am a teacher and absolutely love my job! It has been rough lately, but maybe it's what keeps me going. I have always appreciated the simple things in life- walks on the beach, sunsets, planting flowers, quiet moments with the family. I agree with simply living in the moment, and during difficult times, it has been my saving grace. Thank you for all for your support and kind words. My thoughts and prayers are with you. May we all feel better soon! Climber
Posts: 108 | From Connecticut | Registered: Jun 2010
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posted
OH wow!! I used to teach and I can't imagine trying to do that while going thru treatment. However, I did TEACH for 21 yrs while having lyme!! Some of the time it was "dormant" or not as bad as it got later.
What do you teach?? High school, junior high?? I used to teach elementary.
We're so glad that we could help you through this. This is a great place for support!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Climber, it sounds like you are already doing a great job taking care of your family
Something that we all (I) need to do is to take life one day at a time. Try not to worry about what you can't do right now and just do what you can.
My mom was frequently ill when I was a child. She had cancer, MS, CFS, many surgeries, etc. I never knew how serious her illnesses were or how sick she felt at the time. I did what I could to help her and just liked being around her even when I was young.
Looking back it is clear to me that my "helping" with things like regular household chores taught me responsibility, independance, and necessary life skills. Mom needed help cooking and cleaning and gardening so that's what we did together. I had fun spending time with my mom, I learned, she had less of a work burden.
My mom is also a great listener. She was always there for us when we came home excited and full of stories or upset needing to vent. She still is the parent that we (my sister and I) go to first when we need to talk.
She also taught us to read at an early age and gave us an appreciation for learning. We didn't have much money growing up so we would take frequent trips to the library and traded books with friends.
Growing up, one of the most important things to me was knowing that my parents were there and that they cared for me. They didn't buy me expensive presents, we didn't go on exotic vacations, we ate dinner together and went to church together. Those regular, everyday days are the ones that I remember most.
Take care Climber, now go hug your girls!
Posts: 5237 | From here | Registered: Nov 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
As far as the love and support your daughters receive, I don't think that's really anything to worry about. You're obviously not capable of "not" giving them love and kindness, even though you're not "normal" like other fathers who are healthy.
As far as your work situation, this is a big thing that I haven't seen anyone respond to, so let me be the first to really give some practical information.
Children don't need to live lavishly. They don't need a big house, with a big yard, and a white picket fence. It's the expectations "we" have that makes that seem so necessary.
The reality is, even if it gets really bad, you'll be ok. If you lose your job or have to go on disability, it's ok. You can move to a smaller location, and you can buy a storage box at a storage facility for the "extra" things that you don't necessarily need. You can rent a smaller place or sell your home and find a much more affordable living environment.
What matters is trying to ensure where you live is safe. If your wife doesn't understand, then I hate to say it, but should these types of events come and she throws in the towel, it really says a lot about her, but so little about you -- because you'd be doing the right thing.
The reality is, treatment should be absolutely the best that money can buy. Sell whatever you must (except...your soul, which was a joke I made in another thread about "affording care when you run out of money.)
Love whether rich or poor is the same love.
So, fight to work, but not if it's going to prevent recovery or make you much sicker. However, if you can push thru while receiving great treatment, and you improve, then keep going.
It's ok, really. See? These things may seem so big and probably disappointing, but if it's really true that the kids and your health are the only things that truly count at the core -- then you can give up anything else and settle for less materialism.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I try to focus on what I can give my kids, now, that may not have been if I weren't experiencing this. I'm far more sensitive, compassionate, understanding and focused on them than I would have been if I were up, well and running around like I used to. I hope I am also showing them how to be more accepting of their limits, and how to make the most of times.
We bring in help when we have to/can to do some of the physical work of keeping house/caring for children.
My husband is very supportive, but he does have his limits and this is very stressful on him. He talks to people with similar experiences when this happens. Not necessarily lyme spouses, but people who have been caretakers of any sick person.
Posts: 252 | From New York | Registered: Apr 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I just say as I've kept saying, I do the best I can do under the circumstances I am given. Thats how my son was raised. Given disease, mental/physical, you have to keep going. I love my son, and miss him. He's with me now with my husband, but I feel so distant from everyone I know and love. They know. It will be ok. God sees all and I really believe that. Be well.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Like Lymetoo, I taught elementary school, and also preschool for many years. All the time I had Lyme, but did not know it.
In fact, having been ill most of my life I didn't even know there was anything wrong with me. I thought everyone felt like I did.
That is until I got so bad it was obvious to me that everyone did not feel the way I did.
Then one day I took a day off for a doctor's appointment. I decided to stay home the rest of the week because I was feeling so bad.
However I got worse, not better, with the extra rest. That was the end of my teaching career.
Luckily for me, by that point my youngest was in college, and my older two were out.
I was sick when they were young, when their dad traveled for weeks at a time and I held down the fort working full-time and doing all the carpools.
Now they are all successful adults, and despite my illness they remember the good times, not the rough ones.
I was lucky because my school system had a good long-term disability policy in place for all employees.
I have had to change my standard of living, but I am still able to keep going, although a lot slower now.
The best times are when I am able to spend time with my granddaughter who is almost 2. She doesn't know I am ill.
I recently cared for her while my son was working and her mom was out of town.
On a bad day, I lay on the couch a lot, but I was with her and watching her, singing with her, reading to her, playing with her and loving her.
Those are times I will always cherish and I bet she will remember me for the things I am able to do, not what I can't do.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
while not a teacher, i did participate in conducting briefings and conferences when i worked.
i really enjoyed the statistical part of putting together and being part of those communities.
you should likeyou care passionately about taking care of your children.
take it from me, dear, i was raised in a terribly abusive home. the best thing you can do for your children is be there, treat them with courtesy and respect. honor their opinions and differences and celebrate the moments you do have.
share yourself with them. that's the biggest gift you can give them.
as for your wife, well, i'm not the best place to give advice, since my own homelife is a train wreck.
but maybe give her some space and that might help.
i wish you the very best. you sound like such a nice guy so hang in there and don't beat yourself up over this. it will get better.
remember God never gives us more than we can handle.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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