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.