parentingcfs

Navigating adolescent CFS

If things were different….. July 30, 2012

Filed under: CFS Symptoms — parentingcfs @ 3:45 am
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The third week of third term just started here and our girl has made it to school for a day and a half so far. It’s a bit grim but hey, I’m finally learning the real meaning of not being able to choose what happens but being able to choose how I react to it! And if I smile and laugh, more often than not the world (and my daughter) smiles and laughs with me. It’s a good lesson for me. Unfortunately it doesn’t change things for my daughter but we’re working on it!

This last weekend we put her in the car and took her to the snow.

My husband and son love to ski and my son specifically asked if I would come too this year. Usually it is a father and son trip. I don’t want my son missing out on too much as so much of our lives are dictated by ME/CFS these days so, despite my dislike of the cold and concern about how our daughter would cope, we booked a chalet with friends many months back. Had I known our girl would have regressed so much at this time of year I’m not sure if we would have made those plans. However, as we all learn when dealing with chronic illness, if life can go on, it should.

It turned out to be a great weekend. Our daughter walked from the car to the chalet  and back and then briefly stood in the snow on our way out of the resort yesterday. Otherwise she sat on the daybed with glorious snow and sunshine to look at out of the big windows, watching the icicles melt and snow fall off roofs..as well as listening to music and writing away on the laptop, of course! She enjoyed herself thoroughly.

There were two anecdotes I wanted to share with you after our trip. We were lucky enough to share our house with a good friend and his daughter – who turned 8 on Sunday! S is full of beans and loves to sing. Our daughter has known her since she was born and a lot of laughter therapy was at work this weekend! S had her first ski lesson ever on the Saturday morning, which was beautifully sunny after a snow fall overnight. She then tobogganed most of the afternoon. Upon returning to the house and finding our girl in exactly the same position as when she left S enquired of her dad, “Is H’s illness one that she’ll have for life or will it go away?” to which her dad replied she would have to ask H. I was interested to hear our girl reply, ” If I look after myself and take some medicine I’ll get better.”  Always good to hear what the patient themselves has absorbed! S’s precious little brother has type one diabetes which I imagine is also why this question came to mind.

Second anecdote was poignant. My daughter and I were watching the Olympic swimming whilst the others were out and she said to me, “You know, if things were different, that’s what I’d be working towards now.” Crack!!!! Can you hear my heart from where you are? If things were different indeed. I replied, “But you never liked beating people” to which she responded, “No, but I loved swimming so much I would have kept going…” Ah well, things ARE different and maybe that’s not such a bad thing…as long as it’s not forever.

Alas no school again today but that’s okay. Smile and wave boys, smile and wave!

 

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?

 

Good things to say to a chronically ill person July 6, 2012

Filed under: CFS Treatments — parentingcfs @ 9:47 am
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Hi all.

Well today is our darling girl’s birthday and she’s horribly sick with a cold on top of the usual symptoms. So unfair after the year she has had but we are doing all we can to cheer her up.

I just wanted to quickly post a link to this article as I know how difficult it can be knowing what to say to someone unwell.

In the last week of school our girl told me about being offered a Twistie by a good friend and saying,” Oh thanks but I can’t have them because I am trying not to eat wheat or dairy.”  When asked she explained it was because of CFS and she told me,” It was so nice Mum because they were really sympathetic and said it was terrible.”  Such a few words can mean so much.

Thanks as always to everyone who supports and encourages our precious girl.