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Parenting with CFS

Posted , 9 users are following.

Jbt
Jbt

Hello!

I am new to the forum. I was first diagnosed with CFS in 1998 when I was 13. I have had moderate symptoms since then, but how I felt became normal and I have often pushed through the fatigue - until now.

I'm now 31 and have been absolutely flattened by CFS. I'm mum to two little ones (almost 4 and 16 months) and trying to balance out severe CFS with parenting. My husband is starting a new job and we have some family support but I'm after any tips from anyone that has parented toddlers while having CFS.

So far, I'm imagining playdough, stories, some TV. I live in Australia (but am originally from the UK), so summer is coming up here and I thought we could have time in the garden where the kids can run around but I'm not having to be too active. On good days, I'll take them to the park.

My daughter is teething, so sleep at night is hit and miss. My husband has been doing the night shift and I've been sleeping but that's going to change next week. I'm feeling a bit desperate!

I think I'm a bit in denial about how sick I actually am too. I feel so cheated and the timing is horrendous when my children are still of an age where they need me so much.

Thanks in advance smile

1 like, 14 replies

14 Replies

  • phillis55984
    phillis55984 Jbt

    Posted

    You poor dear!  I've had CFS for over 20 years, but I'm 81 and all my children are long gone from the nest.  I don't know how you manage! No wonder you are feeling a bit desperate!   I guess the only thing I can suggest, and you've probably already thought about it, is to take a nap, or at least rest) when the kids nap, and take advantage of any help you can get from family members.  Is there any chance one of them can be with you for a part of the day so you can flatten out and rest?  My heart goes out to you, and I hope someone on this site can come up with better ideas than mine.  

    • dee53012
      dee53012 phillis55984

      Posted

      I ditto that. Get help from friends and family and take it joyfully!  You need a nap every day!  Take good care of yourself or you will completly burn out.  I have no energy for my grand children at all.  I spent it on my children.

      Hows your diet? Are you skimping on foods that could be more helpful?  I know it is hard to eat well when you are tired but it is is so important to eat real minimally processed foods.

       

  • dee53012
    dee53012 Jbt

    Posted

    I have no advice.  

    My heart goes out to you!

    HUGZ!

      

  • agentdove
    agentdove Jbt

    Posted

    There is no point in telling you to pace, you are already well aware of what you need after living with this so long...

    However have you thought about doing relaxation techniques with the kids during the day. Not only will this give you the added down time you need. But the kids can gain from it too. If timed right and made a route end it may be just the thing to calm them down when you need it the most.

    Mine are adults now, but we still sit and meditate together....no weird stuff, just focus on our breathing while we listen to soft natural sounds. Sometimes we even add some light yoga if we are feeling very energetic.

    Hope you find a fix hunny, wishing you well xx

    • Jbt
      Jbt agentdove

      Posted

      I found some children's yoga DVDs that I plan on trying with them, thank you smile

  • nicoleN
    nicoleN Jbt

    Posted

    I've got CFS, fimbromyalgia plus others secondary illnesses as a result of these illness and I've become so unwell I've made a joke about going to Switzerland. I've been robbed of the best years of my life. I just hope I can drag myself out of the black hole AGAIN that theses illnesses have put me in

    • dee53012
      dee53012 nicoleN

      Posted

      💙💔 Some days I feel that very same way and think those very same thoughts. I'm sure non of us is alone in that. hugz

    • Jbt
      Jbt nicoleN

      Posted

      NicoleN, that sounds particularly difficult for you. I hope that whatever has helped you when you have been in this space in the past helps to get you through this time.
  • sara95803
    sara95803 Jbt

    Posted

    Hi,

    I know how u are feeling I have lupus with chronic pain and fatigue and have a 4yr old and an 8 month old.

    It's very hard I struggle too and feel bad that I can't always take the kids out etc

    Some days all I can do is make sure they are fed and dressed and that's about it! I feel exhausted pretty much all the time. My life seems to consist of sleeping taking medication and feeling unwell. And sleep never makes me feel any better never feel refreshed.

    Like u say just activities that are a bit easier on u and then when u feel well u can go out. I think we just have to accept this is the way it is and manage best we can. There isn't really anything that helps the fatigue, some of mine I think is caused by pain but can't take certain painkillers til my partner gets home as can make me bit drowsy and dopey!

    It's a killer but I think when u have to u just seem to do it even tho u could just cry most days! X

  • nicoleN
    nicoleN Jbt

    Posted

    In the UK there are places like family support or social services who help people like us (I forgot to mention I also have a child) they offer respite care. Is there any support groups you can access? Your doctor should know about this? My son has been a registered young carer since he was 7 years old.

    Try going online and goggle support next works for CFS

    I wish you all the best

  • dawn94288
    dawn94288 Jbt

    Posted

    Bless your heart!  I saw an online blog from one woman with ME in which she described how she would literally lie down outside while her little children played around her.

    I cannot help in the sense that   all my children were done with the toddler years when I got super sick.  I only had mild CFS while being mommy to my toddler daughter.  I CAN  tell you this.  Try to keep in mind that children love it when mommy is down on the floor with them, or on the couch  with them.  I actually have good memories of when I would have a flare up and would slow down to be with that daughter while sick.  Even lying by her to watch a kids show.  Babies of course are another matter!  But they usually just want you near too!  I hope this is a tiny bit of help. I hope your family will be a large support to you.

  • Jbt
    Jbt

    Posted

    Thank you everyone for your replies smile

    My daughter naps for one hour during the day and my son has dropped his day nap. I have decided that when my daughter sleeps, I'll make that hour screen time with my son so that I get a rest.

    I'm leaning on family a bit and will accept any help offered. My son starts three days of Kindergarten in February (currently two mornings), so some extra downtime is on the horizon!

    In terms of food, I'm eating well but sometimes eating things I'm intolerant to (I have an odd intolerance and it's hard to cut out everything).

    • dee53012
      dee53012 Jbt

      Posted

       sounds like you are doing the best you can.💙

  • sueliz57
    sueliz57 Jbt

    Posted

    I was there quite a while ago now and often apologise to my kids saying I'm sorry they missed out on going to the park, other days out etc but they say it was a great childhood and they never knew any different. They knew they were loved and cared for.

    My advice would be to keep within your limits and don't overdo it. Playing in the garden is fine, water play etc, you've said it already

    my only other advice would be to ask for help from family and friends when you need it. I found that hard because I too was in denial about how sick I was.

    accept it and love yourself and don't try and be the perfect mum!

    Good luck!

    Liz

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