Fibromyalgia and Kids: What they need to know about your illness (and how they can help)

Living with fibromyalgia can be hard. Your whole lifestyle changes such as what you eat, your activities, how you sleep, etc. It’s a hard adjustment learning what is okay for your body and what is not okay as well as learning what causes your fibro flares and what prevents or eases them. And when these flares do strike, it’s hard to function especially when you have little monsters children to care for. No matter how young they are, it’s important for your kids know about your illness especially how they can help you with it, too. Here is what your kids need to know about your fibromyalgia and how they can help.

fibromyalgia and Kids - What they need to know about your illness and how they can help #fibromyalgia #chronicpain

 

Trial and Error

Everything is trial and error with fibromyalgia. There are up days where you are feeling well enough to get out of bed or off the couch. Going to the store or being social with friends is a major accomplishment.

 

And then there are the down days where getting out of bed or off the couch require too much energy of which you have none. Going to the store? No, thanks. I’ll eat what I can find. Friends? I don’t want anyone seeing me this way.

 

In order to have bad days, you have to prepare for them on the good days.

 

It takes a lot of preparation, self-discipline, self-teaching, trial and error, and self-awareness when living with fibromyalgia. It can be draining figuring out the illness. But what about the others in your life? How does fibromyalgia affect them and how they cope with it? A large percentage of people living with fibromyalgia do not live alone. We have parents, caretakers, siblings, close friends, spouses, and – gulp – kids.

 

 

KIDS?!

Yep. Kids. You know  – those little people running your house making your life lovingly chaotic? They are the ones that demand just as much attention and care as your fibromyalgia.

 

How do you balance fibromyalgia and kids?

 

This is when I’d like to give you the secret spell to making fibromyalgia and kids so easy to balance. Alas, there is no such spell, but there is a way to create some balance.

 

An additional way to cope with fibromyalgia and prepare for the not so good days is by telling your kids about your illness.

Word of caution here – do not give them all the details. Give them the basics and tell them in such a way that they can understand it.

 

10 Tips when talking to kids

Here are 10 tips when talking to your kids about your fibromyalgia:

  1. Avoid big, confusing words
  2. Give a quick, short summary of the illness
  3. Embrace them while you talk to them
  4. Tell them it’s not their fault you are not well
  5. Make them aware of the good and not so good days
  6. You love them regardless of your illness
  7. Let them know they can help (more below)
  8. Show them how to give gentle hugs and touches to you
  9. Make a flare day list of special activities (more below)
  10. Last, but not least, ask them what concerns and questions they have about your illness.

 

Most of all, explain to them that there will be days you will not feel as well to do activities with them, but that does not mean you do not want to do those activities with them. You love them regardless of your aches and pains.

 

Our family

 

Let kids know they are important

Kids love to be helpers, so by allowing your kids to be involved with the solution will make them feel included and important.

Some ways your kids can help with your fibromyalgia are (chore charts will come in handy here):

  • picking up their toys
  • putting away the clean silverware
  • vacuuming (for older kids)
  • sweeping
  • putting dirty clothes in the laundry basket

 

Flare Day List of Activities

Making a flare day list of special activities can be fun for the kids and a great way to make the flares a bit more manageable when caring for your kids.

my oldest daughter made a cartoon cutout for her younger brother during one of my flare days
my oldest daughter made a cartoon cutout for her younger brother during one of my flare days

 

Special activities can be

 

A flare day list of special activities should be

  • activities that do not require your every second watchful eye
  • no mess to clean
  • are special activities that are only done on flare days (it keeps them special and interested)
  • quiet and peaceful

 

It’s an ongoing conversation

Do not limit this conversation to your kids. Include all those close to you and that you would like to have in your support system. Again, avoid the big words and keep it short.

Living with fibromyalgia can be a very private matter and telling others about your condition can make you feel vulnerable; however, telling those close to you about the basics of the illness and the unpredictability of it will most likely grow as well as strengthen your support system.

 

Fibro Parenting Facebook Group #FibroParenting

 

photo credit: image created by Brandi, Being Fibro Mom
photo credit: image created by Brandi, Being Fibro Mom

Brandi

I'm Brandi, follower of Christ, wife to an amazing, supportive husband, blessed mother to four sweet children, and a fellow spoonie. Facebook-+-Twitter-+-Instagram

10 thoughts on “Fibromyalgia and Kids: What they need to know about your illness (and how they can help)

  • January 2, 2015 at 11:23 am
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    Really great tips and it is such a hard subject to explain to kids.

    Reply
    • January 2, 2015 at 1:12 pm
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      It is difficult to explain, but I hope my tips will help with that conversation. Have a great weekend!

      Reply
  • January 2, 2015 at 3:08 pm
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    I have a couple friends that have fibro, I don’t have it but I do have some chronic conditions of my own, Autoimmune Hepatitis and Graves Disease. Life with chronic conditions and fatigue can be very hard and people don’t always understand. Thanks for this post!

    Reply
    • January 2, 2015 at 3:22 pm
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      People do not understand, but it’s up to us living with the conditions to spread the understanding, awareness, and knowledge to everyone. Thank you for reading! Have a great weekend!

      Reply
  • January 7, 2015 at 5:32 pm
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    That must be so hard! I can’t even imagine.

    Reply
    • January 8, 2015 at 12:55 pm
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      It is which is one of the reasons I have become much more reliant and dependent on my spiritual side.

      Reply
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