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Managing CFS with children around

Posted , 5 users are following.

L.emma.eden
L.emma.eden

Hi There 

I have Mild CFS , only affects me about 4 days out of seven, the other 3 Im bouncing with energy, but the remaining 4 , Im struggling to move, aching muscles, headaches, tiredness and no motivation whatsoever. 

Well its the summer holidays, I have 2 highly atve children aged 6 and 4 , both deserving my fun side and attention, but Im struggling to find the motivation to leave the sofa most days . 

Can someone help me please, thier school holidays are slipping away and in between packing to move house and this CFS, Im struggling and really sad about it 

 

2 likes, 24 replies

24 Replies

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  • sunshinemb
    sunshinemb L.emma.eden

    Posted

    Hi L.emma

    Even though you describe your CFS as mild, you have it all the time and the reason I suspect you suffer 4days out of 7 is that you are doing far too much on the 3days that you are feeling well.

    It's a vicious circle because you are fighting your condition!

    The stress of moving house and having the children home for the holidays could easily push you into an even worse relapse.

    Unfortunately, you don't have the energy reserves to cope with this amount of stress.

    So something is going to have to give!

    You are unable to leave the sofa because you are beyond exhausted which affects

    you mentally and emotionally! Then you start to beat yourself up about everything!

    Can you go to bed when the kids go to bed... I mean early?! Don't do anything after they have gone to bed...It will kill you to do this because you will want to get through housework and stuff but you can't do that sort of thing with this condition!

    Also if you teach the children at their age that their mum is not fit enough to keep up with them they will adapt to your situation!  My grandkids still call me Supergran even though I can't do very much with them!

    I lie on the settee and show them how to play chess, scrabble, play cards, show them how to knit, but they know how it is now and don't expect too much!

    I really feel for you because I was fortunate that I did not get ill until after the kids

    were adults and I was in my late 40's.  I cannot imagine what it must be like to try and cope with 2 little ones as well as having this awful condition.

    Take care and hope you feel bettersoon?!

     

     

  • sally_14743
    sally_14743 L.emma.eden

    Posted

    Hi 

    my husband had CFS when my kids were 5 and 7 . 

    He may not have played football with them or run about but he spent a lot of quality time cuddled up with them watching their TV programmes , Disney films. Reading books to them . Playing there computer games with them. All from the settee.. 

    Yes they missed out and no they didn't . They don't even mention now as adults anything about there dad being ill and how bad it was. He was there , he loved them and he gave them love and time I don't think they realised . I worried but when he recovered when they were 10 and 12 he started getting energy back he played football with them took them swimming etc ... Made up for it ... 

    Try not to beat yourself up.. Kids just love their parents and want love back ... 

    And be careful on your good days not to try and make up for the bad and over doing it  you want to improve not get worse ... You have to think long term ... 

  • L.emma.eden
    L.emma.eden

    Posted

    Thank you Ladies 

    The headaches are the worst, even when im sat down, we are watching television and getting headaches from this too . 

    I have put alot of weight on in the past year , since stopping playing netball. The extra weight isnt helping

     

    • sally_14743
      sally_14743 L.emma.eden

      Posted

      Hi 

      weight can be lost and gained try not to worry. 

      But it would really help to get yourself referred by your gp to a CFS specialist in a hospital near you. 

      You may think what can they do?

      well firstly diagnose you reassure you and give you treatment options.

      so there is a drug they prescribe to CFS patients which stops pain. 

      If you have headaches or body aches. It's an epilepsy drug which has a side effect of stopping your brain registering pain it's called sodium valporate . 

      and if you can't sleep a relaxant/ anti depressant which works with CFS sufferers notriptyline .

      then they can offer to refer you on to an occupational therapist who tailors a recovery plan to your life style. The occupational therapists are great. 

      So much info so practical and they just deal with CFS. 

      You need help . It's out there but you have to nag your gp to get it . 

  • L.emma.eden
    L.emma.eden

    Posted

    I sleep really well, which is good. I just wake up absoleutley exhausted!

     

    • joanne3853
      joanne3853 L.emma.eden

      Posted

      The more sleep I get the more I want with cCF. I've noticed tho winter months are the worst. My heart races when I'm at my worst with CF and sometimes I'm breathless ,, it's awful and so debilitating at one point I could just make it to the bathroom for a wee and I had to lay back down . 
  • joanne3853
    joanne3853 L.emma.eden

    Posted

    It's extremely hard, I find the more I get stressed the more fatigue I actually get. If you have a car take food and drinks and go to the park. If that's a unreal option , TV and creative toys are your best bet. I do sympathise I really do but it's one if those situations where you need someone to take over really. 
  • L.emma.eden
    L.emma.eden

    Posted

    I wish i had people around me that were able to. All my friends work and my husband works full time. 

    I dont think he understands this too well either, he was upset with me this mornintg because there wasent a clean top for him to wear to work. I felt bad but he also knows how to use the washing machine. 

    I have managed to get to the shops today and am now preparing tea for everyone.

    WIll follow advice and get an early night tonight as would love to take the children to the park for a few hours tomorrow 

    • sally_14743
      sally_14743 L.emma.eden

      Posted

      Can you afford to get a cleaning lady who will iron etc.. 

      Do internet shopping . 

      So that you use energy for premium things.

      it takes a lot of prioritising.

      if you go to bed early will you and your husband miss out on time together will your relationship suffer . 

      Try and plan your week so that you have time for you, your hubby your kids and then see if the shopping cleaning etc can be done by someone else .. 

      Just a few brain waves 

    • joanne3853
      joanne3853 L.emma.eden

      Posted

      I actually did something pretty severe with my family, my kids are pretty much grown up so I could get away with it. I basically went to my friends for a full week. I got the shopping in and just cleared off. Leaving a letter saying where I had gone n didn't want bothering unless the house was on fire. I made it clear that when I returned I wanted the house exactly the way I had left it, clean n tidy. My friend help me do all this. I left literature about my condition and told them in the letter they had to read it. 

      When I got home the house was tidy and I asked questions like a school teacher on my condition . They obviously read only some of it but life became easier. 

      If they slip into it I will do this all over again. 

      Maybes you need to think of a way your hubby can take you more seriously , I actually got the idea as long as it could walk n talk ,  they didn't think anything was wrong . It's easy for them to forget , as it's not how you look it's how you feel that matters.

      If you can get some friends to help , just to help you with the kids a couple of days a week, not to take them off your hands just to help amuse them after school or during the day. Extended family a aunt or cousin . People need to take your condition seriously . Ask your doctor or health visitor if there can be any holiday centre to take the kids to play that's free or discounted. At least they are out of the house for a while so you dnt have all the housework to clean up it's how you left it , this can amuse them for sometime so it's not too long till bedtime . 

      Talk to your hubby get some literature printed out leave it on his pillow ect. People all need to help it's a very debilitating condition . 

  • L.emma.eden
    L.emma.eden

    Posted

    Well i went to bed earlier last night and feel abit better this morning. 

    I have weighed in and I have gained half a stone in 2 weeks ! 

     

    • sunshinemb
      sunshinemb L.emma.eden

      Posted

      Hi L.emma

      I am so glad you feel better this morning!

      I had exactly the same problem putting on weight!

      I was eating loads of sugar to try and boost my energy levels!

      I was diagnosed with hypothyroidism which is quite common in

      people with CFS/ME this exascerbated the weight gain!

      I am on levothyroxine now and lost some weight, but now

      losing weight because of gall bladder problems and waiting

      for surgery!

      Oh... and before I forget, I have had my shopping delivered by Asda

      ever since they started the service and they bring it right into the kitchen and put it on my work top so that I don't have to bend down! I know that Tesco and Sainsburys do it aswell.

      If you are in an area that offers this service I would definitely recommend it, and if you get it delivered when your husband is home, he could put it away!biggrin

      If you put your washer on  either time it so that it is about to finish as hubby comes home  and he can sort itwink...or you could organise it so the kids could help you empty it and turn it into a fun activity for them!  

      My grandchildren have done this for me ever since they were toddlers cos they were fascinated with the washing machine...biggrin

      They also liked to make the lunch for us all...sandwiches mainly and I did

      supervise them, but it passed the time and they enjoyed doing the task!

      I hope you this helps L.emma and that you have a lovely day today?!

       

    • L.emma.eden
      L.emma.eden sunshinemb

      Posted

      Thank you so much for your help 

      They tested my thyroid, that came back as fine . 

      I have been eating all sorts to try and get energy, but its not working. 

      I have so so much weight to lose and I doubt my ability to do so, afterall how can I exersise, how can I stop eating, when Im bored so much from being stuck in the house. 

       

    • sunshinemb
      sunshinemb L.emma.eden

      Posted

      Hi L.emma

      I totally sympathise with the eating and weight gain!

      I have only managed to curb my eating because the

      gall bladder pain is the worst pain...ever!!!

      So I am scared of eating much at moment, but I would

      not recommend it as a weight loss programme!!rolleyes

      Take care

  • L.emma.eden
    L.emma.eden

    Posted

    Been to softplay today with the kids, it was lovely. Took my laptop and watched a film whilst they played. Im back feeling refreshed which is a nice feeling 
    • sunshinemb
      sunshinemb L.emma.eden

      Posted

      Hi L.emma

      So glad to hear you had a good time today?!

      And it's great to hear that you feel refreshed!

      Hope you can get some rest over the weekend?!

      Take caresmile

       

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