parentingcfs

Navigating adolescent CFS

Thankful Thursday May 9, 2013

Filed under: General — parentingcfs @ 3:52 am
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In no particular order, today I am grateful for: (apart from the usual 2 arms 2 legs etc!!)

– an unseasonably warm, sunny day in Melbourne

– my supportive, self-disciplined and generally awesome husband and the fact that he has been at home much more than usual

– the way our amazing 11 year old son has calmly accepted that dairy is causing him problems and is carefully avoiding it without me having to expend any more energy on cajoling him (I think I may finally have the impetus to quit sugar…if he can do this when he loves milk, I can too)

– the way my daughter happily occupies herself for hours at a time and likes time without me (gives me a freedom that I would miss badly if it weren’t the case)

– the fact that my daughter is still doing well on midodrine and managing to get out most days (yay yay yay yay). Just hearing her well enough to have a shower right now makes my heart lift a little

– the wonderful primary school my kids went to who have been nothing but supportive and are running a fundraiser next Monday organised by my son

– the supportive head of junior school at my daughter’s high school

– my family and friends who listen and make me feel that I’m doing the best I can parenting this $%#&* illness, make me laugh and understand. You know not how important you are!

– the new friends I have made who are also parenting/living with this illness. Wouldn’t be without them.

– the fact that we were able to tell our son that scientists and doctors worldwide are working right now to work out how to stop his legs from hurting all the time and stopping him playing sport.

–  the delicious sweet potato mash with lentils and Japanese dressing that I just ate for lunch!

– the fact that I was eventually able to pick up a 3 month supply of midodrine yesterday despite initial refusal at the hospital pharmacy even though doctor had recommended. Going monthly has been a pain in the patoozie. Big win. Sounds small but big deal for me with current life logistics!

– Facebook! (location of many friends I would otherwise not catch up with at the moment and also others going through similar problems with children’s health)

– the family members who feed us on occasion, dietary requirements and all…..so so grateful for meals I don’t have to think about myself!

– good tv!

– the lovely blue earrings my husband gave me for our 20th wedding anniversary last December!

– and last but so definitely not least, the people worldwide who are not giving up on solving the puzzle that is ME/CFS

Lots to be grateful for huh?! What about you?

On with the day. One moment at a time.

 

The baby March 21, 2013

Filed under: General — parentingcfs @ 4:48 am
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Once upon a time there was a girl who was so sick she couldn’t go to school anymore. Everyone knew that she would wake up one morning and feel well enough to go again but, in the meantime, the girl and her mum tried to fill the days with other things that were helpful and not too exhausting and, well,  just made her feel good and less like she was missing anything.

The girl had always been great with words. Before she got sick she often read a book a day but now she struggled to read one a month as it was just too hard to keep the plot lines in her head. She found that she could still write bits at a time though, if they were about things she wanted to write about and not too long. After she had to stop going to school ,she started putting some of her writing online. She decided to keep it very private so that no one she knew in the real world would know it was her writing. Except her mum – who was privileged enough to be shown some pieces and felt the honour greatly!

After 2 weeks the girl had 457 people following her ‘vignettes’! After 3 weeks she had 607! The girl was pleased that people liked her writing and the days seemed to go less slowly.

As the girl was very smart about her privacy, she had decided to use her unusual middle name as her pseudonym online. She started having conversations with some of the people who liked her writing. One day she woke up to find a special message. It said that a girl found her writing so inspiring that when she was given the chance to name her little sister who had just been born, she chose the girl’s pseudonym!! The girl was terribly ill and missing her friends BUT SOMEONE HAD NAMED A BABY AFTER HER BECAUSE OF HER WRITING!!!! What a day. The girl told her mum. Her mum asked if she could share the story on her blog as it was so special. The girl said yes.

I hope this made your day too. Best wishes to the new baby. May the name bring her much luck.

The End

 

The joys to be found in poetry September 4, 2012

Filed under: General — parentingcfs @ 9:02 am
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I read this poem recently and have given a copy to my daughter. I feel it’s a beautiful reminder that we don’t always need to be going somewhere to be making the most of life. This post is for all the kids I know of doing it tough as life takes a path a little different to what they had expected…and to their parents. May you have days when you are well enough to enjoy the stillness. xxx

 

Leisure

What is this life if, full of care,
We have no time to stand and stare.

No time to stand beneath the boughs
And stare as long as sheep or cows.

No time to see, when woods we pass,
Where squirrels hide their nuts in grass.

No time to see, in broad daylight,
Streams full of stars, like skies at night.

No time to turn at Beauty’s glance,
And watch her feet, how they can dance.

No time to wait till her mouth can
Enrich that smile her eyes began.

A poor life this is if, full of care,
We have no time to stand and stare.

 

William Henry Davies

 

Thank you all. August 24, 2012

Filed under: General — parentingcfs @ 5:16 am

I’ve been overwhelmed by the response to my last post both here and in other forums. Sad parents in similar circumstances wrote in and were incredibly supportive and also many friends kindly reacted to my bleak moment. I am extremely grateful to everyone. Anyone who has had to go through any kind of adversity must know how heartwarming such support is. Thank you.

In addition, close friends who happen to be parents of my daughter’s friends have encouraged their daughters to drop by this week and that has boosted our girl’s spirits no end. It is very easy in this situation to feel that you are not very interesting since you don’t get out of the house much and our girl is often reluctant to reach out. Also two of her beautiful new friends from high school have arranged to come by this weekend, which means the world. I am full of gratitude.

Thank you so much to everyone for just hearing us and being there x

 

Rachel’s beach walk blog May 29, 2012

Filed under: General — parentingcfs @ 1:41 am
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http://www.lifesabeachwalk.blogspot.com.au/

Hi all. I’ve just discovered this blog about a wonderful woman called Rachel  who is raising awareness of ME/CFS by walking 700 kms along the NSW coast..just because she can now after  10 plus years of illness that started when she was 15. Always great to read something inspirational and there’s some lovely photos too.

She also (hesitantly) shares her recovery story. She states categorically that what worked for her may not work for others… hence the hesitance.  Interestingly what she does talk about is something that fits in with what we are exploring right now. Very interesting read.

Hope you enjoy it.

 

Camp! February 29, 2012

Filed under: General — parentingcfs @ 12:38 pm

This week was school camp. 125 Year 7 students headed off Monday morning and will be back tonight -Wednesday. Our girl chose to go up just for the day yesterday and luckily the camp was only an hour away so manageable for me to do the driving there and back. (Actually I partly filled in the time by taking myself to the movies a little way away and saw “Any Questions For Ben’ and, despite what the critics are saying, loved it!!!! Highly recommended for people who like the movies I like – especially people who love Melbourne….!)

Anyhow, back on topic, our girl had 8 hours at camp! Among other things she participated in ‘water trampolining’ (is exactly what it sounds like -trampolines in water -bizarre but great fun apparently !) and rode on a flying fox! Oh and ‘walked up and down big hills Mum’! I know, dream come true right?!!!! AND SHE’S NOT BADLY CRASHED TODAY! She’s pretty tired (a 4), as I would expect after using muscles she hasn’t used for a while, but doing homework with no increased brain fog etc. It still feels like a miracle. She was very happy to come home and not be spending the night. She just doesn’t have the physical stamina still…

But, as I keep saying, compared to where she was, this is enough. : )

Ever heard of water trampolining???

 

Precious moment. November 16, 2011

Filed under: General — parentingcfs @ 3:13 pm

Had one of those lovely poignant moments today.

Harriet was well enough to have a little shop so we bought her Grade 6 dinner dress.

Looking at her, standing there in the dressing room looking so beautiful, with all that mixture of innocence and ‘growing up ness’ going on, I was struck by how it seems impossible that she can look so right on the outside when her body is playing such tricks on her on the inside. Truly, if you judged by the wrapping, you would think she was a picture of health – if perhaps a little pale.

Roll on the day when the inside matches the outside again! : )