Living with a child who has ME/CFS

I wrote a post yesterday about ME/CFS Awareness Week, and shared a video taken from the ME Associations website, which really shows what it is like living with ME/CFS.  Today I am going to write a post about what it is like living with a child who is suffering with this chronic illness.

My Daughter is 12, up until New Years Eve, she was just like any other child of her age, she went to school, met up with friends to go shopping on a Saturday or met up in the school holidays.  We had just started letting her out on her own and she was loving it.

Then on New Years Eve our life changed dramatically, she became ill , she became very tired, constant headaches, pains in her legs and trouble walking.  At first we thought it was a bug, but it did not get better, we had numerous trips to the Dr and finally Consultant who has been great in her care.

At the start we had daily struggles with school, she loved school and tried so hard to go in, but it was really hard for her, they kept trying to get her into school, or if she was in she would spend most of the time in the medical room, which was not helping her at all.  We had meetings the the Deputy Head, Attendance Officer and Welfare Officer.  Luckily they understood that it was an illness and not her just not wanting to come to school.  I  have even been in tears in school with frustration, of not knowing what was wrong with her, and seeing her in so much pain and so unwell.  When we finally got the diagnosis through and the school received their letter, I was in school for a meeting to discuss her going back, although I had found out unofficially the week before, I saw in black and white for the first time her diagnosis in that meeting.  Things changed dramatically that day, and they are being great and taking each day at a time.

I have had to face negative comments from friends and family, she is just being lazy, you need to get her up and walking about, she needs to be in school, the list goes on.  It was hard, at times even I doubted whether she was making it up, although I never told her this and never will, as something in me knew that she was not lying.  I have become very protective over her now, and cut any negative comments down straight away.  She needs support, she needs positive comments. The picture above was taken today, as you will see she looks normal and was not suffering too much with tiredness, an hour later she looked worn out.

My Daughter, has been a star throughout all this, we have had the tears and the down times, I have sat with her when she has been breaking her little heart because she couldn’t walk, or because she feels so tired and worn out, has no energy, can not go out with her friends, have a girlie day out with me.  I have held her and fought back my own tears to be strong for her. On her better days, she has her sense of humour and her spark and she just goes with the flow.

For myself and my husband, it has been hard fighting with school, fighting for help with her pain, I have cried so many tears, of frustration, and helplessness as I couldn’t give her a cuddle and tell her she would be better soon.  I have stood in the middle of a room holding her weight as she couldn’t walk, I help her steady herself, picked her up off the floor.  I have even begged to make her better and let me be ill in her place.

I was not sure how she would take the diagnosis, but she took it well, we had sort of prepared her for it, so it was not a huge shock.  We have our bambi days, which are her really bad days where her legs just wont work or she is in so much pain she just can not walk, and we have our not so bad days.  She gets worn out very easily and we have to plan her rest if we go out or do anything.  We do not know how long she will suffer for, it could be a few more days, weeks, months or years.  But we look on the positives, never the negatives, if she is having a bambi day, we laugh about it, if I have to pick her up off the floor we laugh about it, they say laughter is the best medicine, and staying positive does help.

We are currently, looking at getting a wheelchair for her, so we can start to go out, if she is not too bad she can push it, if she is having a bad day, or just can not walk she can sit in it and still enjoy being out.

 

 

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46 Comments

  1. 10/05/2016 / 9:59 pm

    You and your daughter sound really brave and she is one special girl to have you. A wheelchair sound’s like it will be a good move for her.

    Big hugs x

    • admin
      Author
      10/05/2016 / 10:20 pm

      She is very special and thank you, any mum would do the same. Hopefully we will have a wheelchair soon x

  2. 11/05/2016 / 8:42 am

    It must be so difficult seeing your gorgeous daughter like this, I suffer chronic fatigue which is bad enough for an adult but to see a young girl trying to make her way in the world suffering is so sad, hope things get better soon xx

    • admin
      Author
      11/05/2016 / 9:52 am

      It is hard, I think the hardest thing now is seeing her stuck in when she knows her friends are out doing things, that breaks my heart, as she should be out having fun. This week is hard as she is having a really bad week. I am sorry you are suffering with this as well, it is not easy x

      • 12/05/2016 / 8:15 am

        Poor girl, life is so cruel and such a beautiful girl, sometimes these neurological diseases just disappear as quickly as they came, hope this will be the case for you, dont let it stand in her way theres loads of support out there is she want to go into further education x

        • admin
          Author
          12/05/2016 / 12:19 pm

          Thank you, we are hoping it just disappears one day, we often have a light hearted chat about maybe tomorrow she will be feeling better, or next week. We have been totally honest with her and she knows she might be like this for days, weeks, months or years, or she can have good days for a day or two, or weeks, months or years. Obviously she is wanting the latter. She is such an inspiration to us really x

  3. 11/05/2016 / 9:04 am

    You both sound like you are working hard to make the best of things. It must be difficult when it is an illness that isn’t very visible.

    • admin
      Author
      11/05/2016 / 9:50 am

      This is the trouble, it is not a visible illness, unless you see her up and walking you can see she has trouble, and I get very over protective if I see people stare as it is all new territory for me, although most people are sympathetic.

  4. 11/05/2016 / 9:42 am

    So good you can laugh together, you and your daughter are so courageous and writing this post is so great for others in the same situation to know they are not alone.

    • admin
      Author
      11/05/2016 / 9:46 am

      Thank you, I think laughter does help, it makes my Daughter feel better and seeing her laugh makes it easier on us x

  5. 11/05/2016 / 11:48 am

    So sorry to hear about your daughter’s illness and struggle you all must be going through. Thank God she has a supportive family! 🙂

    • admin
      Author
      11/05/2016 / 1:15 pm

      Thank you, it seems easier now in way, as we finally have diagnosis we know what we are dealing with x

  6. 11/05/2016 / 2:43 pm

    I can not believe that friends and family have had negative things to say considering how much pain she is in! I really hope that she gets better as quickly as she got ill or you manage to find something to ease her pain x

    • admin
      Author
      11/05/2016 / 3:27 pm

      Thank you, it was negative comments that were meant to be well meaning, for example she shouldn’t be so tired , she wont walk if you dont make her. Hopefully the bad days will become less and we get more good days x

  7. 11/05/2016 / 3:09 pm

    Poor little thing. I have recently been diagnosed and wouldn’t wish it on any one, especially not a child so my heart breaks for you both. Thank goodness she has you to support her, and there is nothing worse than feeling alone with this. Sending you both lots of love x

    • admin
      Author
      11/05/2016 / 3:25 pm

      Thank you, I am so sorry you have been diagnosed with this, it is a horrible illness, today she has not been able to get out of bed as she is so bad x

    • admin
      Author
      11/05/2016 / 6:43 pm

      Thank you, I think she is a star too x

  8. 11/05/2016 / 6:05 pm

    You and your daughter are strong and I hope the coming days will be better for both of you .BTW, she looks pretty in the pic 🙂 !

    • admin
      Author
      11/05/2016 / 6:40 pm

      Thank you, hopefully she will start to have more better days and less bad days soon x

  9. 11/05/2016 / 6:11 pm

    It must be so hard seeing someone you love going through this – let alone a child. x

    • admin
      Author
      11/05/2016 / 6:39 pm

      It is very hard, it breaks my heart at times, like today she has had a bad day and I could not do anything to make it better x

  10. 11/05/2016 / 7:39 pm

    It must be so hard for both you and your family, and for her. It’s sad that you have to put up with negative comments; some people are too quick to judge others. I hope you manage to get the wheelchair for her – it sounds like you’re being the best mum she could ask for right now.

    • admin
      Author
      11/05/2016 / 7:57 pm

      Thank you, I do feel at times that I am failing her but know there is nothing any of us can do but just give her the support she needs. I think it is the not understanding the illness and especially now we have the diagnosis it is easier to tell people.

  11. 11/05/2016 / 8:34 pm

    I didn’t realize how crippling ME/CFS was. I can only imagine how difficult this must be. It’s great that you’re so supportive.

    • admin
      Author
      11/05/2016 / 9:52 pm

      It is awful really, and it breaks my heart to see her on her bad days, thank you x

  12. 11/05/2016 / 11:48 pm

    Thank you for writing this post, such a brilliant insight. I’m pleased the school are being reasonable with you and your daughter xxx

    • admin
      Author
      12/05/2016 / 12:24 pm

      Thank you, school are being really supportive thankfully x

  13. Charli Bruce
    12/05/2016 / 7:08 am

    I really can’t imagine how hard it is seeing your little girl go through this, it’s hard enough for me when I have to see my daughter be ill with something so simple as a bug! You have such a brave, strong, courageous daughter and I really hope you can get a wheelchair for her soon just so it can give her that little bit of freedom back xx

    • admin
      Author
      12/05/2016 / 12:21 pm

      That is the thing, when she has had a bug, it has been horrible and you just want to get the bug so they are ok, seeing your child ill is hard, but for us it has now become a way of life and live with it daily, and on her better days we have to remember not to do too much or get her to take it slowly or it really knocks her back down. She is such a star and we are so very proud of her x

  14. 12/05/2016 / 6:29 am

    How awful foryour little girl, it must be so hard to see her suffering like that.

    • admin
      Author
      12/05/2016 / 12:22 pm

      It is very hard, even now it gets me down, especially on a bad day where she just has no energy to do anything and her eyes just says it all x

  15. 12/05/2016 / 8:21 am

    Aww how awful for her. I didn’t realise you could get it so young., its not something you normally associate with children.

    • admin
      Author
      12/05/2016 / 12:16 pm

      Surprisingly there are quite a few children with it, but a lot of the support and information is for adults x

  16. 12/05/2016 / 8:44 am

    What amazing daughter you have and what an amazing mother she has. ME is still such an alien illness to people including the medical profession. You must have been out of your mind with stress and frustration until you had the diagnosis.

    • admin
      Author
      12/05/2016 / 12:16 pm

      She is amazing, we are very proud of her. It is an alien illness and was to us really before she became ill with it. I don’t even want to go back to the stress and frustration we went through before her diagnosis, although we knew the diagnosis was coming it really hit hard when we got it, but also felt like a huge weight had been lifted off our shoulders as well, as we know what we were now dealing with x

  17. 12/05/2016 / 10:15 am

    Oh bless her, it must be so tough. I hope they find what is causing this and ultimately a cure. Sounds like she has a great support network around her

    • admin
      Author
      12/05/2016 / 12:13 pm

      It is tough at times, unfortunately there is no cure it is just dealing with things on a daily basis, this week has been a tough week on her.

  18. 12/05/2016 / 1:13 pm

    My heart goes out to you and your daughter who are both so strong! I’m shocked that you had people around you who told her to just stop being lazy and go to school! I hope that the wheelchair makes a big difference 🙂

    • admin
      Author
      12/05/2016 / 3:51 pm

      Thank you it was harder at first than it is now really, as we are in a routine and just get on with each day depending on whether it is a bad or a better day. I refuse to push her to do more than she can, and if she can not manage anything then she doesn’t. The wheelchair will be a huge help to her x

  19. 12/05/2016 / 10:15 pm

    I have an interactive thyroid and feel tied most of the time but to have this completely debilitating disorder must be horrendous.
    Ride the rough and the smooth days together and stay strong x

    • admin
      Author
      13/05/2016 / 12:41 pm

      I have a friend who is being tested for her thyroid at the moment, she is suffering with tiredness too, we just take each day at a time and go from there

  20. 14/05/2016 / 2:21 pm

    Sounds like the school have been okay with the situation. I know many schools put a lot of pressure on parents to send children in, even when ill. My daughter had chronic migraines for a while and when she had time off they were not understanding at all. I wish you all the best for the future x

    • admin
      Author
      14/05/2016 / 3:27 pm

      Oh no, it is such a shame when school are not supportive, my Daughters school were not fully supportive at the start, which I suppose is understandable, but I think they saw that it was more than just a virus or excuses. I hope your daughter is not suffering too much now x

  21. 14/05/2016 / 3:27 pm

    Your poor daughter, she’s being so strong. I can only imagine the upset and frustration but now she’s been diagnosed it must be easier to progress with life knowing the cause. A great post to raise awareness, I hope her Bambi days are few and far between

    • admin
      Author
      15/05/2016 / 8:07 pm

      Thank you, she is such a star with how she is coping x

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