Talking to kids about FM
survivedlasvegas posted:
I'm a single mom with 3 kids; a son 9yrs old, two girls ages 8 and 5 (in 2 weeks). I'm having trouble explaining to my kids what FM is and why it makes mom so tired and sore and groggy. I work from home and there are days where they can't help but notice mom is not normal, not quiet ok. I nod off b/c of my meds or start talking about going to swim class when we're really going to karate class. We laugh these things off mostly, but it's just been stressful on me. I worry that they don't understand mom is sick but ok b/c I'm on meds and seeing dr.'s. It's hard to tell them I'm ok and then have them see and notice the side effects etc. How do I make them feel safe and comfortable with mom being sick. I'm not the same as other moms I need to do things different in my life to make me feel better, like exercise and meds. I am really struggling with how my recent diagnosis of FM and everything that's going with it is effecting my kids. I have always had limitation on my life b/c of the pain, and fatigue, but now it's a more real something I can try to explain and I thought this would make things better for my kids, and I don't think it has. I think it's just brought it to the fore front of our lives and left more questions and concerns for us all.
any thoughts or ideas on how to help with this would be great.
mrahoe responded:
hello and welcome

the links i will post here might help you explain to them what is going on with you. . im sure the spoon therory will be something that they will understand . .i sure hope it helps

and you can share them with friends and other family who are haveing trouble understanding

Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind.--Dr. Suess
booch007 responded:
For the longest time my boys made fun of me. When I ran out of gas, or a spasm of the muscle occurred they tortured me with mockery. It is still something they don't want to hear about.

They push it away. I think children when older, can't deal with a parent not being perfect, not always being there.

Now as a single parent it is so impartant that they do feel that nothing is going to take you away from are always going to be there for them. This will not kill you but you have gotten sick.

We call him a dragon...the spoon theory is good for them to understand the fatgue that hits.....they need to understand that the muscles you have have broken, they won't do everything you want them to do..that YOU are frustrated in this and it is sometimes shared to them....BUT IT'SNOT THEM.

I passed my anger at the dragon to my husband more then once, when I had to stop what I was doing........and didn't want to.

Your pediatrician may have good words to talk to them...they are used to the age groups and know what they *get and Don't*.

Remember they are like every other human.....this is YOUR disease, they can't feel it so they WILL forget and want more of you in the future. be forgiving* I have this so long now that the family expects little and then when I can give more they are so happy.

Watch your meds though, try and stay in non-narcotics and flush you body with good hydration (water preferred). Moving is a given with this age group. I worry with the groggy comment and a 5 y/o, you could get into trouble. I really wish you well, it is not easy to do this with a partner, let alone by yourself.

There are other single Mom's here...hope they chime in to help. All my best, Nancy B
katmandulou responded:
I just read The Spoon Theory - I loved it!

I think the most important thing to tell children is that it's not contagious! I explained to one of my nieces why Auntie didn't get up and play ball with everyone else; it was during a cookout and I was having an awful day. She was happy with my explanation, and still asks on occasion "it today a 'play with us' day?" She's a sweet, compassionate girl, and I treasure her. (She's also one of 28 nieces & nephews we have!)
me_n_my_4 responded:
I was once a single mom myself so I can totally relate to what you are going through. I found out back in March that I have RA and Fibro (although it wasn;t suprising since I have been having muscle and joint pain for years). Any how I have a 9 year old, 5 year old twins, and a two year old so trust me I have my share of work. I too first struggled with how to explain things to my children and one thing I found that helped with is that I explained things to my oldest and we did reseasrch together and she was actually very interested to know what was going on with mom (since mom is supposed to be SUPERWOMAN and take care of everyone else). I thought the spoon theory was very helpful. Also I read in article on WebMD. It talkes about explaining RA to children but I used it for both conditions it was kind of universal.When I was first diagnosed and my daughter always wondered why I was so tired or how come I was always sick she was kind of disappoint because unfortunatly sometimes there would be a change of plans just because of the pain and fatigue. Now it's to the point when she sees that I have overdone myself or that I am tired she tries to take to charge and help me out (even though sometimes it's more trouble then help,lol). Even when she sees that I have had a long day she would tell me "Mom when we get home you should lay down and rest and I will take care of things until dad gets home. Even though I can't let her do that it's the point that she offers and even tries she is alwasy telling me to sit down and rest, but when I have good days I always make it up to them 110% because they are so patient with me. My others kids go with the flow, as long as I have the approval of the oldest one she helps the younger ones to see the advantages of waiting it out when I can't go through with things that we have planned. I hope this helps and if oyu have a chance check out the article about explaining RA to children because I think it could help with the Fibro as well.

Take care
survivedlasvegas replied to booch007's response:
Nancy B,

Your post was very thoughtful and comfortanting as well as helpful. I do strugle with a lot of the furstations of wanting to more than my body will let me. I want to jump rope and not cry in my room after b/c it hurt. I want to run and play with my little guys buy i give out afer a short while. And yes we've all made it a joke too, "mommy is old, Mommy is slow, mommys knees and joints pop and crack too so they laugh that i'm noisy and cant sneek up on them.
After awhile its hard to keep that smile on but i know its there way of dealing with some of this for now and i dont know a better way yet. I know that they worry i'm sick i'm all they have so i dont want them to think this is goign to take me away from them. The idea of talking to there pediatrician is a great one thanks i think i will do that.
I have searched out a local support group to start going to monthly meets to be able to talk to others too her in my area. since i am alone i thought this might help out with some of my stress and give me some support. I will go to that first meeting this month *crossing fingers*
I'm slowly stopping this first med the dr. put me on b/c of how groggy it made me i told her i cant be so confussed and tired all the time. I am the sole caregiver of 3 little kids that cant happen, if the meds all make me feel that way i'm going to have to continue to "tolorate" the pains and tiredness.
I've never heard of the spoon theory, but you and another person both refer to it, she posted a link too, so i'm going to go look and learn more about that in a few minute.

Again thank you for taking the time to reply
survivedlasvegas replied to katmandulou's response:
thank you thats a good point.
survivedlasvegas replied to me_n_my_4's response:
Thanks. I never thought to let my son (9yrs old) research with me. But that's a great idea, he is a very bright kid and likes to know the facts, so looking at things and learning together online might be a great way to help him feel better about what has been happening with me for years, since b/f he was born, we just now know what it is. thanks for the idea! I can completely relate to supermom being on my own i take care of all 3 24/7 and have to fix the broken shelf or kiss the booboo's its my job to teach them how to jump rope. This makes doing some of those things harder, but i feel if i dont who will so i keep pushing through for them. they need me to be mom and to be ok and so this is a big adjustment, knowing mom is not allways feeling ok. thanks for the advice. and the link i will def take a look at it.
Take care
survivedlasvegas replied to mrahoe's response:
Mrahoe, i've not heard of the spoon therory before, thank you for sharing the links i will go look at them now. thanks again
chrichie responded:
I am not a single mom, but I am a mom. FM is not easy to explain to anyone. You have had some wonderful suggestions. The thing I would like to share with you is that (for me) FM changes and rarely presents itself exactly the same way two days in a row.

With my kids, I started by explaining in basic terms what it is. My youngest daughter, who is an emotional child, thought I would die from it so then I had to explain while I would always have it, it was not a terminal disease. I used various methods of explaining all of it, like showing them things or talking to them about how I felt. The biggest thing that seemed to help is that we have made it an open subject (a better term escapes me right now) in our house, meaning they can ask anything they want to about it and I promise to answer as honestly as I can. They can also express fears and disappointments they are feeling as a result of my illness without thinking they will be in trouble. My oldest daughter told me it makes her feel safe to know that I will be honest and she can be honest too.

Its not easy but we are making it work as a family. My kids were 4 and 6 when I was diagnosed and they are (just turned) 13 and 14 now.

I hope you find a solution that works for your family.
angelldakota responded:
Hi hun... I got sick a long long time ago... or at least it sure feels like it... Over 30 years for I was sick long before it was called growing pains... but l got to the point I had to talk to my children about it when my oldest son was about 13 and my youngest son was 10 and daughter was 8... It was my second bout of cancer since leaving my second husband... and they didn't expect me to make it... That was the hardest thing I ever had to do... but our family counselor was there... and even tho they were very upset they were so brave... they got home to talk some more...

The thing that touched my heart the most was my youngest son... I was in a lot of pain... had taken my pain killers... just resting... he came to me and curled up with me... tears in his eyes he asked... "will the pain ever go away" and with all the compassion a human could muster my 10 yr old said I could die if it meant me being out of this bad bad pain... I knew then he understood...

I had cancer 3 more times while raising my children... It was hard on us all... but I know it was their strength that kept me here... now I have been cancer free for just over 10 years... and going thru tests every 6 months unless I have symptoms...

during all that time I developed herniated discs and sciatica... had 2 back surgeries... l also found out I have RSD 30 yrs ago... MS 15 yrs ago... CFS and FM about 2 I think years ago... So I had a lot of medical talks with my children...

I can tell you one thing... I don't think we would have the relationship we would have today had I not been open and honest about all that was going on with me... I couldn't raise them without them knowing something was wrong... I was in and out of the hospital a lot and had to rely on friends a lot for family was out of the question...

My children and I went thru a lot but became closer because of it... We cried together... were afraid together... rejoiced together... laughed together when Mom started walking funny lol... We built snowmen in a baby bathtub in doors in the winter... and had indoor picnics on my bed when I couldn't get out of it all year round... We celebrated some birthdays on time and some belated... and some in hospitals... and some the neighbors threw for I couldn't do it at the last minute... We still were the neighborhood safe house for runaways and for kids in trouble... and I was neighborhood Mom to at least 50 plus kids that still call me and call me Mom...

You can have a life with your children... just use your imagination to do things with them... and when it comes to your illness be upfront and honest... Yes it hurts but no I won't die and I will be here for you the very best I can... How about a picnic indoors today...

I have rambled enough... and one of the few things I do now a days is be my sons alarm clock... it is time to get him up for work... Bless you and yours... take care...
When you need a friend, reach out to a stranger and you will have one. If you need help, help someone else. if you need to cry, find someone already crying and celebrate life. Love Jan
Fidod responded:
Hi I understand totally where you are coming from. I was recently diagnosed with Fm but have suffered with ME for the past 15 years without a diagnosis.

I have three children 10, 9 and 7 all girls and they have learnt the signs to let them know that mum is bad. It is a time process but all I can say is tell your children that when they are feeling ill they feel awful and that is like you and that you need rest and you can't be running around.

I do things now that the kids look at me gone outI have to write post it notes and stick them to areas so I know where i have put things, I have to wear wrist splints and I am forever losing them as I put them down but cant remember what I have done with them.

It is a time frame - sit with your children and show them where it hurst and how it hurts - its not easy but I have had years of practices but what I will say is when i cry they know that i am in pain and you get a different reaction to the one you had before.

I hope this helps
jsgregg replied to Fidod's response:
I do not have kids of my own but my niece when she was 5 lived with us and she watched me when I had a bad episode. I was down for a summer. Could not walk that well, my pain level was a 20, I was on all kinds of medications. We had to find a way to explain to her what was happening to me.

I was diagnosed with FM, RA, DA(Degenerative Arthritis in my lower back and neck), Diabetic, and a few others. Well my sister and I said "you know when you are sick with a cold and don't feel good" well Aunt "Krys" gets sick it is bad. she hurts alot when she is sick. " my niece said to me " Aunt "Krys" I am sorry you don't feel good what can I do to help you feel better. She would sometimes come and lay down next to me and give me a light hug to make me feel better.

She is 11 now and during the summer I was having a flare up and she saw how I walked and she asked Aunt "Krys" are you sick again. I told her yes I was, and it was a so so day. Later that day I fell and she tried to help me walk and stay near me for a short time. I told her to go and play. We were at the water park when this happened. She has such an abundance of love, concern and some what understanding.
survivedlasvegas replied to Fidod's response:
Thanks so much Fidod. Yes i'm learning that the kids, espesially my almost 10yr old son, are learning and adjusting to my being tired and needing to rest. Its been a hard road and i'm afraid its not going to ever be easy. But we're getting through it. As they get older i'm hoping this disease will be easier to understand. But for now I've learned its easier to explain it as mom gets tired and sore some times and needs a break to rest a little to feel better.

Thanks for your advise and support.
survivedlasvegas replied to jsgregg's response:
Jsgregg, Your post is touching. I am going through these things with my kids. I worry that seeing mom sick and not able to do all the things their friends do is harmful to them. I'm a single mom and have no help or support so I thrive to be for lack of a better word a super mom alway doing what needs to be done. But there are times where i just cant even when i want to. My kids are so concerned and want to help but i worry that this is putting a burden on them.
I hope your doing well and thanks for your post.