We got back last night from a 5 day trip to Uluru (Ayers Rock to those of you stuck in our politically incorrect past!) Oh my. It was just what the doctor ordered. If you haven’t been I’d throughly recommend it. We stayed at a beautiful hotel that wasn’t cheap but our plane tickets were all from frequent flyers points…the only benefit the kids get from Dad being away every week. And we had 28 degree days, a beautiful pool and my Mum flew in from Perth so a great family holiday. And that’s before we even get to the scenery. Which. was. amazing. Even after the two years we lived in the Pilbara.
Anyhow back to the topic at hand. Guess what…our girl thrived!!! We had 3 days at the resort (when you exclude the plane time) and not only did she muck about in the pool and keep up with our 2 sightseeing days but…….she walked The Valley of the Winds…. a 3 hour walk!!!!!!! Totally mind blowing! Her father and I were privately concerned ..and she herself was nervous …..but we left the choice up to her as to whether to walk or not and she managed it just fine. She did have some extra rests along the way but who knows if they were due to muscle deconditioning (she hasn’t walked more than a couple of blocks since February) or CFIDS symptoms?
So, what does this mean? Well, there is a tiny tiny part of me that goes ‘Wow, she’s on the mend!” But the reality is that’s probably a little optimistic.Why? Because from my observation and purely anecdotal evidence I’ve collected over the last months, there seems to be this thing with adolescent CFIDS that sometimes the sheer joy of something can overrule the physical symptoms of your body that are telling you you can’t do it and you can do things. Has anyone else noticed this?
Now don’t get me wrong. This is quite different to willing yourself to do something. Willing yourself = making yourself = makes you much sicker in the long run. Kids (and adults) with CFIDS would give anything to be able to overrule their body’s messages and will themselves to be able to do certain things and not suffer by doing so. If what I am staying is misunderstood you may think people with CFIDS just have to ‘get on with it’, ‘try harder’ and all those horrible things that people today are still so erroneously told. I would never suggest in a million years that this is something that can be controlled. It’s more like some chemical in their system (adrenalin?) is just released to such an extent that it takes over.
When I asked our girl (towards the end of the trip because I was determined not to remind her she was ‘supposed to be ill’) what number she would give to the way her symptoms made her feel each of the days we were away she gave each day, except one, a 4 (5 being the worst). This is the same number she would have given most of the days of the last month…so she had headaches, nausea, stomachaches and fatigue everyday…..and yet she managed to do so much more. If this were a kid who didn’t like/do well in school or swimming or violin or any of the other activities she’s voluntarily missed over the last six months how easy it would be to label her as a school ‘refuser’. Sadly this is what many kids with this illness are up against.
Boy am I looking forward to the day that someone actually discovers what the hell this complex illness is all about.
And now it’s Thursday morning and she has got up to eat the porridge I made (because I insisted) and is now back in bed, exhausted. No school today. Aaagh. I can somehow literally hear voices saying ‘What?????? Make her go to school!’ Aaaaah I once too thought like you. Now I just listen to my child and hope.
I would LOVE to hear from anyone else who has observed this long-term adrenalin(?) effect in their CFIDS diagnosed child.
Update: At lunchtime today we talked about the 3 hour walk. She said she regretted it because it was hard and she’s very very tired now. Sad. Ho hum.