Navigating adolescent CFS

Aaaah the mystery….. August 4, 2011

Filed under: CFS Symptoms,General — parentingcfs @ 11:16 am

Oh wow. I have to think very carefully about what to write in this post.

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.


4 Responses to “Aaaah the mystery…..”

  1. Sue Jackson Says:

    You are so right, Annie. Kids and adults with CFS can often “push through” and do something we really want to. Unfortunately, with CFS, the bad effects come later, and you have no idea at the time that you have gone over the line. Some studies have shown that the post-exertional crash peaks at 3 days after the exertion (or longer).

    For us, this makes it even harder for extended family to understand what we live with. My kids will always rally themselves to keep up with Gramie & Pop Pop and their cousins, and everyone thinks they are fine…and no one ever sees the resulting crash afterward. There have been times when my oldest son has been so badly crashed that he’s in bad shape in front of my family, but often he manages to perk up for them.

    This is also what makes it so hard to prove disability (a process I’m in the middle of right now). They ask questions like “Can you go to the grocery store?” “Can you take a walk?” Well, yes, I can actually do just about anything a healthy person could…but then I may have to spend the next week in bed!

    Anyway, I am so glad to hear your family was able to enjoy a wonderful vacation together and feel “normal” for a few days! I hope your daughter recovers quickly.


    • Annie Says:

      Thanks so much for this Sue. So what you are saying is that there ALWAYS come a point when the activity catches up right? I was just so surprised that our girl was able to maintain the pace for such a long period-I just wished I could harness that feeling for her to use…but that’s just me still looking for a cure huh? I think there are possibilities involving retraining neural pathways-neuroplasticity SCIENCE not ‘just snap out of it’ therapy stuff – to pick up on this positivity so my mind observes theses little bubbles of energy with interest. Anyway I hope to blog a little about that soon. Sorry about the subscription issue & thanks heaps for letting me know. I am running a 10 year old birthday party tonight and big family day tomorrow so will let you know when I get it sorted. I’ve been reading about your disability claim process, I can only imagine how distressing that must be. I wish you the very best of luck and will keep my ears open as to what the process is here. So far everyone has been very supportive school-wise but no cash required I guess. Hope you are having a good day.

  2. Kerrie Says:

    Although our girls suffer from widely different “conditions” I can totally relate to those highs and then the crashes. My girl had a big Sunday of physical activity which almost always leads to a physical crash. In her case it’s only soreness and stiffness but watching her trying to get out of bed like a 80 year old can still be heartbreaking after all these years. It also makes her very emotional and you’d think I’ve have learned by now to trust that she needs more time and some care but I forget….I had an assignment due and I really wanted her to get to school. DEEP BREATHE…REMAIN CALM! I did calm down took the other one to school came back and gave her a hot bath then a nice long massage and she felt a lot better. Yes she missed a few hours of school and in the end I had plenty of time to finished my assignment. Not sure why I seem to have to learn this lesson over and over again. Obviously I need reminding, it’s easy for us to be lulled into a feeling that everything is “normal” whatever that is. Take care. K

  3. Annie Says:

    Oh Kerrie it’s so true isn’t it that we get locked into these ideas of ‘the norm’ and then it’s like a light goes on and , as you say, DEEP BREATH and change track and somehow it’s still all okay. It must be the human condition to have this expectation of how the day is going to unfold and the shifting of gears we have to do when it doesn’t can be almost physically painful…and that’s just us not the girls! The heart aches but I’m convinced we are all learning skills that will stand us in good stead…somehow?! Big hug, hope that assignment gets done. x

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