coping with fibro and a family to take care of

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onedayoneday
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/15/2010 2:12 AM (GMT -7)   
I am new to this forum and I was wondering if any of you out there have small children that you also have to take care of in addition to your self and your illness.
I have 5 children ranging in age from almost 16 to 6 and I find coping with their needs to be so hard sometimes. I want to be a good mother and be their for them, but how can you be nice and understanding and patient when you are in so much pain. I remember hearing a phrase said by someone famous, "you can only act a little nicer than you feel" and so if I feel horrible how nice can i be. I would really appreciate hearing how other deal because I feel like I am drowning most of the time.
Suvivor Power

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 8/15/2010 6:46 AM (GMT -7)   
Hi oneday, I can so relate with you even though my children are for the most part grown up now, I still have vivid memories of them being younger. From the time they could walk I would no longer be able to carry them because of the pain. They were a handful to keep up with and there were days I wanted to pull my hair out from frustration. lol
One thing with children is they do understand especially at the ages your children are at that you are in pain. With me it helped them when I would just sit and talk to them about things. No I never could play active games with them but they all knew that I loved them even when I was cranky. You can never say that enough to them. Three simple words I love you and lots of hugs for them that is what they need the most.
Welcome to our fibro family sorry that you have to be here but glad that you found us. There are so many wonderful people here and they will be here soon to welcome you.
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40576
   Posted 8/15/2010 7:59 AM (GMT -7)   
Hi Oneday,
 
as your name says it.  One day at a time.  That is all that you can do.  And I agree with the above post.  Keep saying "I love you".  That says a lot. 
 
You have a lot to deal with.  I would suggest putting about an hour aside each day for just you.  Take a nice bubble bath or pamper yourself in one way or another.  You need that to keep sane.  It will give you more energy too.  I do a lot of meditation.   That really helps to center me.  I highly recommend that for you too.  And with practice, it doesn't take much time to get into a relaxed state.  It relaxes your muscles which helps the pain to subside.  And get a bed buddy.  You can find them at walgreens.  They are a tube filled with rice or beans.  You heat them in the microwave adn then put them around your neck.  They relax the muscles a lot. 
 
I am so glad that you have joined us.  Keep posting and know that we all care.  If you get a chance, get familiar with the thread called fibro101.  There is a wealth of information on that thread.  It answers a lot of questions. 
 
Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies

onedayoneday
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/15/2010 8:39 AM (GMT -7)   
Shirley and Karen,
Thanks so much for answering my post. I have been searching for people who could understand what i am going through for a long time. I have found that if you don't have it you don't get it, and most of the people in my life don't get it. Your support means a lot to me I am going through a really rough patch now and it helps to not feel alone. I agree about the meditation i do a lot of it and i find it really helpful as well, but i have almost never experienced the pain subsiding because of it, what it does is helps to calm and center me.
Gentle and Supportive Hugs,
OneDay

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 8/15/2010 8:41 AM (GMT -7)   
Hi, oneday!  Well it can be done.  I guess I didn't take time to think about how I felt.  I knew I had my children and I knew I had to take care of them so I worked around my disabilities. 
 
I was stricken with Crohn's disease when my children were 4 years, 2 years, and 6 months old.  Crohn's causes a lot of diarrhea and I couldn't be far from the bathroom.  I couldn't take the kids to the park, on picnics, etc.  But, I could read to them, sometimes play with them, do puzzles with them, I had a table filled with coloring books, drawing paper, crayons, etc.  Yes, I told them all of the time how much I loved them.
 
By the time they were around 9, 11, and 13 I developed fibro.  They were older so they could now give me a hand.  I was as active in their school functions (room mother and PTA) and I attended all of their sporting events that they were in.  These are all things you can do with fibro.  
 
The best thing about all of this illness that I could find was I was home for my children.  I was fortunate that I wasn't working anymore when all of this hit me.  My children could count on me being there for them, they knew there would be a good meal put on the table for them, too.  It was hard but it can be done. 
 
I did feel guilty because they didn't have the childhood I had imagined and dreamed they would have, but you know what?  They are now all adults and they told me a few years ago what a great childhood they had!  So, remember what a blessing they are and do what you can do for them.  The love  you give is what means the most to them.  And, above all, don't feel guilty.  You didn't ask for this problem but you can make the most of it!
 
Sherrine
Forum Moderator/Fibromyalgia
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 8/15/2010 1:05 PM (GMT -7)   
Oneday,

My experience was pretty similar to what others have already said. I couldn't pick up or carry my youngest once she could toddle.  I always wanted to run with them, go bike-riding, swim, swing them around by the arms, etc. etc. etc!!! Not in the cards.  A short walk was as good as it got. 

When I was first diagnosed, about 20 years ago, I got a hold of a short video that explains the whole experience from a sufferer's point of view. My husband and kids watched it, but when it was over, they just got up and walked away without a word. Ouch! It took me awhile to get over being mad at my husband for that one.

He's matured a lot since then. Now he really understands (as much as anyone who doesn't have it can) and that goes a long way in keeping my stress/pain level down. How is your support system?

Debbie
...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

Post Edited (Acheybody) : 8/15/2010 2:08:50 PM (GMT-6)


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 8/15/2010 6:37 PM (GMT -7)   
what is the video? can we access it?
Sue

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 8/15/2010 6:41 PM (GMT -7)   
I don't remember, Sue, it was so many years ago.  But I will check to see if I still have it.
...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

MinnyMouse
Regular Member


Date Joined Jun 2010
Total Posts : 197
   Posted 8/15/2010 7:07 PM (GMT -7)   
Hi onday..

Everyone else already said about exactly what I would say too. I'm so sorry you are in the condition you are now, but you did find the right site for support. My kids are grown now but I can remember well all the times I just could not cope. I really leaned on my husband and family for the support and was so grateful. They grew up and as they became adults they more understood the pain I was in. Unfortunanlty , my youngest daughter is stuck in the nightmare too. You can teach your children how to handle the stress of your pain and they will be strong. Because you can't pick them up and sometimes have to say NO, does not mean you are a bad mother. You do your very best and that's all you can do. Your kids will understand and don't be afraid to enlist your family to help. Grandma and Grandpa's are great for taking the pressure off.

I hope you feel better. Take care and keep sharing. It helps to let others know how you feel and to know that all of us here are dealing with similar issues.

Gentle Hugs.
Steph
Savella, Lyrica,Mobic,Tramadol,Flexeril,Omeprezole,Vitamin D3,

livenlaugh
Regular Member


Date Joined Dec 2009
Total Posts : 387
   Posted 8/15/2010 7:30 PM (GMT -7)   
I have three young children so I know how you feel. I take it day by day. Everyone on the forum has had great advice. I am trying to stay afloat some days!
Take care!
Lisa

onedayoneday
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/15/2010 9:00 PM (GMT -7)   
Trying to stay afloat is a good analogy, somedays are so hard how do stay calm and not lose it, sometimes they are my greatest strentgth and comfort and sometimes i want to walk out of the house because the noise and the tension is so great it physically hurts me. I have headaches all the time and i need quiet and that is not possible in a noisy house with five children and their friends. how do you stay nice all the time the guilt is overwhelming when i lose it or i can't be the wife my husband needs, i fall asleep most nights before he even comes to bed because i can't hold on any longer. what sleep i get from the clonex i take is the only peace i get. the only time i am not in pain and sometimes that doesn't work either.
OneDay

livenlaugh
Regular Member


Date Joined Dec 2009
Total Posts : 387
   Posted 8/16/2010 4:59 AM (GMT -7)   
There are days that I need to get out of the house once my husband gets home. The stress gets to me and I do feel guilty when I yell at the kids. It makes me feel horrible and like a bad mother. I am also a foster mother so right now we have a 10 yr old staying with us. I feel horrible snapping at her. My daughter wants to snuggle at night where all I want to do is go to sleep or need my space. I do know what you are going through and wasn't sure how to express it or thought that I was the only one feeling this way.
Lisa
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