Navigating adolescent CFS

Frustrated ‘fixer’ mother. August 22, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:28 am
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We tried rest, didn’t work. We tried medication, worked for months then abruptly stopped working. We tried exercise, she got worse. We tried rest, she got worse. Now we’ve finally found someone who can do a very careful strengthening routine with her…and this week she’s worse again. If you haven’t lived this you cannot understand how it feels when your 13 year old doesn’t want to see another clinician because ” They don’t know anything. They can’t help me.”

I now know I’m a fixer. I can’t accept that I can’t find an answer to my daughter feeling too unwell to go to school or have any kind of active life. And yet, after nearly 2 years, acceptance is becoming my greatest friend…it protects me from the agony of false hope. I would do anything to help my child and here I am where there is virtually nothing I can do except love her, feed her and let her do anything she’s up to.

I’m getting pretty angry about the lack of attention and funding this illness has received to date. This morning I sat there watching her make herself swallow medication and wondered at the immense responsibility I have for this life as I daily make decisions on what she takes/eats/does with absolutely no evidence-based guidebook. The responsibility comes with parenting of course, you never know the cards you will be dealt. But most people get a little more research thrown their way when chronic illness rears its head.

I’m, of course, hoping this week’s sore throat, dizziness and weak legs is due to a virus and not the gentle pilates. But am I kidding myself? Whatever the cause we’ve eased back off the ‘exercise’ for the moment again. (Exercise in this case is lying on the floor with her head raised slightly and raising and dropping her arms. Seriously. Do you get what I’m saying?  This wipes out a child who used to do 50 push ups plus other exercises then swim for 90 minutes.)

Anyhow, I just needed to vent. My girl can still get out of bed, mostly. We have a roof over our head and enough money. We have loving extended family and great friends. If spring could just come…..


14 Responses to “Frustrated ‘fixer’ mother.”

  1. Jo Koehn Says:

    I hear ya’, Annie, I hear ya’… thank you for putting my thoughts into words. I have nothing to add but am sending all the cyber hugs I can muster your way. Keep on loving your girl and hanging on to hope. In the end, it may be what we’re left with..

    • parentingcfs Says:

      Thanks Jo. I knew there’d be many parents out there who could relate! Indeed we must always hope and we will. Hugs to you and your girl (and other 2 living with such illness in the house) x

  2. Sue Jackson Says:

    So sorry to hear she is in another crash, Annie. I know how difficult these past months have been for you and your family – we have been there ourselves…and no doubt will be again. I also hope this is just another viral trigger. Or is it possible that the PT person is going a bit too far, too fast for her? I remember reading Dr. Rowe’s article on neuromuscular strain that mentioned that just raising the leg can result in a crash – perhaps the same is true of the arms?? Just guessing…

    I haven’t been keeping up (with anything!) very well lately. Did a higher dose of Florinef not work for her either? Did you get up to 0.2 mg yet? Last I recall, you were going to try that and maybe midodrine, too.

    Hang in there – I know how tough these times are for all of you, but things WILL get better!


    Live with CFS

    • parentingcfs Says:

      Thanks Sue. We are giving the PT a go first before we fiddle with the medication again. Seeing the physio again tomorrow so will see what they say. I am beginning to think this week was definitely a viral thing but I guess we’ll see next week! Fortunately our girl is calm and happy enough. An old friend of hers is dropping by tomorrow and her 2 new high school friends are coming over on the weekend – their idea. Bless them.

  3. Tanya Carter Says:

    You’re wonderful Annie, I wish I could say something profound or meaningful but the best I can do is let you know we are thinking of you and sending you all lots of love and hugs.xxxxx

    • parentingcfs Says:

      And that means so much Tanya, thank you, thank you. We don’t need anything profound or meaningful from our friends, love and hugs hit the spot perfectly! Hope all well with your gorgeous family. We will be over again this summer so look forward to catching up. xxxx

  4. Kerrie Says:

    Oh Annie, it will get better. I don’t know why I have such faith… Just keep doing what you are doing. x K

  5. Horrible for you but very reassuring for me to know I’m not the only mother who feels this way xxx

    • parentingcfs Says:

      So many of us parents in a similar boat Sally…but only now being able to link up on a global scale and stop some of the isolation. And hopefully rattle cages until we get some proper answers! Hugs to you and may it be/have been a ‘good’ day. x

  6. FW Says:

    Your strength and conviction for your child will carry you both through this. I have similar issues as yourself and it really is one day at a time and each day as it comes. I used to hate hearing those words BUT I have slowly come to realise that they are true when you are dealing with chronic illness and it does help me not to look beyond today.

    Stay strong.

    • parentingcfs Says:

      Thank you so much for your kind words and for taking the time to comment. I’m so sorry you are in a similar situation. You’ve probably already read about the Facebook group we have for parents in this situation but just thought I’d mention it. You are welcome to join and just listen and not contribute if you prefer. Best of luck with your own journey and yes I will focus on just taking the days as they come : )

  7. keena Says:

    I totally understand your frustration. I too can do something one day and then the next, it wipes me out. I try to live as normally as possible but that is not always easy. The best thing you can give your daughter is love and acceptance. My thoughts and prayers go out to you and your family.

    • parentingcfs Says:

      Thank you Keena. It does seem a common thing that the severity of the illness waxes and wanes, doesn’t it? I guess that’s why we call it a roller coaster.
      I’ve never liked them! Hope some good days are coming your way : )

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