Navigating adolescent CFS

Why you will sometimes see CFIDS kids socialising but not at school. November 4, 2011

Filed under: CFS Treatments — parentingcfs @ 1:14 pm

Trick or treating.

As I’ve mentioned before, we are blessed here in Melbourne to have two paediatric CFS specialists. Recently, one of them presented at the conference in Ottawa about her long-term study of adolescents with CFS and their chances of recovery. Her advice on how to tackle a timetable for each week, in descending order of importance, was: socialisation, education, physical activity and commitment to attend.

Often, socialisation and school attendance overlap and how we parents love it when our kids can make it to school. Yes! It means we can tick the box of having a normal parental achievement! (Not to mention the bliss of an empty house albeit only for a few hours – or for others the ability to be at work without worrying about the lonely sick kid at home) Our child is doing something the outside world approves of and is conforming to the norm expected of a functioning , healthy society.

However, sadly, when you have a child who feels constantly ill and is dealing with all the pressures of growing up, you are forever walking through an emotional battleground. The harsh reality is that it’s possible for education to be caught up at a later date but a happy, healthy mental state…..well there is simply no replacement. So there will be times when you will see our children out there celebrating Halloween or at the school fete LOOKING PRETTY DAMN HEALTHY! What you won’t see is how they collapse when they get home, sometimes for a week or more, having worsened their symptoms of headaches, nausea, aches and pains and sheer exhaustion by their physical exertion.

We are comparatively lucky. Our girl CAN still leave the house for social occasions that are important to her. Many other CFS sufferers are not so lucky. They rely hugely on the internet for their social interaction as even visits from others can tire them out. Even the internet is too much to concentrate on on bad days. We are so grateful our girl can still mostly sit upright even on bad days.

It’s looking more and more likely to me that blood pressure issues (Orthostatic Intolerance) are a major cause of our girl’s symptoms. The nausea, cold extremities, sleeping issues and headaches could all be largely linked to this. We have another appointment with our specialist in just over a week and we are looking forward to investigating further and possibly medicating. Fingers crossed we can do something to make life more tolerable for her. And help her spend more time at school.

Next week is Grade 6 camp. The culmination of seven years at a wonderful primary school. As this school has multi-ageing and every grade is mixed, this is the only camp of the seven years where everyone is in the same grade. It’s a rite of passage as they prepare for venturing out into the next stage of their life…high school.

Our girl won’t be going.

It’s sad, but she’s okay with it. She knows the nausea, exhaustion and headaches would stop her doing any of the adventure activities and that she just couldn’t enjoy the camp while she feels so ill. We looked at alternate ways of attending, me bringing her in for a few hours at a time whilst staying off the campsite etc. However, she was adamant. If she couldn’t do it all, she’d rather rest and help her body be in a better position to attend Year 7 camp – even part-time – in 4 months time. Because that camp will be important in helping build the social relationships for the next 6 years.

And these are the choices we sometimes have to make. Which camp is more important? Whether to trick or treat, causing her to smile and laugh, interact with peers and extended family and create unique memories – knowing that  even two hours at school will be off the agenda for, at least, a few days after. So please support us with our difficult choices. We too want our kids at school, achieving, and these kids want to be there. It’s just that in our world, hopefully temporarily, it’s sometimes a choice between mental health and happiness and stabilising physical symptoms, or getting to school. (And let’s not forget those teenagers whose symptoms  preclude them leaving the house at all for weeks on end.)

It’s a strange, twilight world but one we’re getting used to. Thank you again to all our friends and family who are so beautifully supportive. We are extremely grateful for your understanding.





7 Responses to “Why you will sometimes see CFIDS kids socialising but not at school.”

  1. Jo Says:

    Oh, Annie…you make me cry but VERY well-said! This is our reality, also, and it stinks! Young people (well, no one, really!) should have to make such difficult choices. I know that it is hard for others to understand and, yet, as you say, education can be made up at a later date but healthy teen/pre-teen development cannot. I simply will not make my child go to school or work on homework for an hour or two, knowing that she will quickly forget most of what she is working on anyway, in lieu of a couple of hours spent with a special friend or watching her gymnastics team compete at a meet. Seeing her smile or laugh used to be a common, everyday occurrance. Now it is, sadly, fairly rare but I will do all I can to help her find joy whenever I can. Woe be to those who hassle me about this choice!!

  2. Annie Says:

    Jo..sorry I’ve written half a reply to you twice and life kept interrupting me! Also sorry I made you cry – it’s all part of the knowing we’re not alone huh? As you know our girl managed an hour at the pool yesterday and I’m sure some of the parents from school were surprised to see her there….. I feel like I should walk around with a sign on me explaining the above. Yes healthy development and happiness has to be our focus right now and watching those gym meets (being as much a part of something as possible) is so important. : )

  3. Sue Jackson Says:

    You said this so eloquently, Annie! This is one of the saddest things to me this year – that Jamie hasn’t even had enough energy to go out with friends once in a while. With all the school he’s missing this year, he confided recently that he feels isolated form his school friends, like they’re drifting apart because he’s never there. One girl in our local group goes into school each day just for lunch period and a pottery class! She’s getting all her schooling from her homebound tutors, but this daily social interaction is so important for her!

    Same with our local group of teens with CFS. They all had a great time Saturday night – always do when they get together – and for some of them, these gatherings are their ONLY social outlet.


  4. Annie Says:

    Yes the people working with us here have already brought up the possibility of attending at lunchtimes without even going to class on certain days. At the moment for H the breaks are actually the hardest part..I think because socialising is so exhausting and she simply can’t keep up physically. So she will probably be attending a class or two without much ‘outdoor’ time. Still we’ll see, anything could happen….

  5. […] academic and sporting..although if any of these overlap it is ideal) I’ve written about this before but it’s impossible to overemphasis just how helpful this advice has been for us as […]

  6. Carol Says:

    My Son (10) has been diagnosed with CFS.. He hasnt attended school for months.. But so many people see him in the car going to the doctors and comment, Oh why isnt he at school? He looks ok to me!! This site has helped me Immensely.. now I have to think of a smart quick comback to all the “experts” One person told me my son was ill because I allow the dogs in the house!! LOL

    • parentingcfs Says:

      Thanks for commenting Carol. The best comeback I’ve heard…and sometimes use is “Yeah thank goodness he doesn’t look on the outside like he feels on the inside” You’re welcome to it!

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