Navigating adolescent CFS

This too will pass July 17, 2012

Filed under: CFS Symptoms — parentingcfs @ 5:16 am
Tags: , , ,

Second Day of Term 3 today and our girl hasn’t made it in to school yet. This morning’s conversation went somewhat like this:

(On my walking into her room) GG: I’m sorry I just couldn’t get up.

Me:  Oh darling, that’s fine. (Pause while I swallow my own disappointment and ponder my next words.)  You know, it’s really hard for everyone at the beginning of term getting back into the routine….

GG: Please don’t make me go.

Me: No no, I never make you go. Just maybe this is one of those times where you have to do what you’ve committed to.

GG: I feel like someone is sitting on my shoulders. (She is lying down still….bad  blood pressure sign if you feel like that lying down. She’s never described it like that before.)

Me: Oh sweetheart. Have you felt like this before?

GG: Yes, when I’m crashed it feels like people are sitting all over me.

Me: Ok. I’ll just get you a drink and some breakfast and we’ll see if that helps.

(On my return to the room she’s still lying down eyes closed but speaks)

GG: I HATE this. I so want to go to school.

Me: (acknowledging internally that as always she is demonstrating without realising it that I must accept she knows what she’s doing.) I know you do. Never mind. Maybe tomorrow. (internal sigh and another little crack in heart)

Luckily we have four episodes of Offspring that need watching! We’ve got through 2 so far today. Yesterday she wrote beautiful poetry and caught up on maths. Now we’re waiting for the Maths teacher to tell us what chapter they are doing this week. Oh French though. We need to do some of that if she’s up to it.

How was your morning?


8 Responses to “This too will pass”

  1. Deborah King Says:

    Hi Annie, my heart contracted reading your blogpost. Enjoy Offspring. Try not to be too downhearted (easier said than done, I know) and remember that backwards steps will happen from time to time but do not have to mean a full blown relapse. Love you guys and wishing for a short-lived blip. Love to you both.xxxx

    • parentingcfs Says:

      Thanks for taking the time to write Deb with all that is going on in your house. Sure hope it’s getting a little easier and that you’ve managed to catch up on some sleep. Luckily Offspring was AWESOME! Very funny Aussie series about a ditzy doctor. Love to you xo

  2. I just got a lovely email from an ME friend of a healthy friend (if that makes any sense).

    This friend of a friend, had ME as a child, serious heavy, life stealing me/cfs but did recover very slowly by the time she was 19. I know, that is a long time, but it was really encouraging to hear from someone who did autocorrect.

    She still has it to some degree and is very aware that she has to rest, get lots of sleep, eat well and look after herself more than other people but she is able to lead a normal life.

    If she can do it, your gorgeous girl can too. 🙂 .

    • parentingcfs Says:

      Thanks so much for sharing this Sarah. It IS comforting to think that H has a good chance of significant improvement, especially as she was diagnosed early. As I’ve said before, there is no doubt in my mind that the answers for all of you are just around the corner and I know they can’t come soon enough. Hope the IVs are still giving you a boost, sounds v positive. Keep up the good work!!! x

  3. Keena Says:

    It breaks my heart that someone so young and seemingly so sweet has to deal with this awful disease. I am 41 and I have a hard time with it. You, as her mother, seem to be very supportive, caring, and understanding of her situation. Just remember that this disease comes in cycles. I pray that one day, maybe not in my lifetime, there will be better treatment if not a cure for the wretched disease. I send my prayers and love to you, your daughter, and your family. Keep the faith and never give up….I dont know what kind of support that YOU have but if you ever wanna vent or talk with someone, email me and I will give you my #…..((((HUGS)))))

    • parentingcfs Says:

      Thanks Keena. Sorry for my delay in replying. I hope you are doing okay. I am lucky to have a very supportive family and good friends. Yes, I need to accept the ‘cycles’ don’t I? So hard to do as a mother. But I must! Thanks for your kind words. Hugs back. Annie

  4. Sue Jackson Says:

    Hi, Annie –

    I am waaaaay behind in reading blog posts and thought I would try to catch up on yours (don’t you feel honored? ha ha)

    This conversation was so familiar to me…and so heart-rending. I know just how you are feeling (or were feeling on July 17…)

    We have to walk such a delicate balance as parents – encouraging and supporting without pushing them past their limits. I can tell you from my own experience that you just KNOW when you are too sick to do anything. And, I think that all of our kids would give anything to jump up and go to school if they were capable of it. Don’t let those naysayers who think our kids are school-phobic get in your head!

    Thinking of you…


    • parentingcfs Says:

      All through this Sue your elaborations on how it feels to BE sick, rather than just be the mum have helped me empathise with my girl. Thank you. And yes they sure would love to go to school. Thanks for your thoughts.

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