Childhood CFS – M.E. in children for Awareness Week.

We don’t do much serious spouting here on LittleStuff, but what’s the point of owning a web site with thousands of visitors if I don’t actually use it occasionally, huh? So.

It’s M.E. Awareness Week this week. I’m far too busy to be anything like a proper, proactive fundraiser and go bake cakes or shave heads or something. So instead, I’ll do what I do best. I’ll ramble on a bit, and tell you a little about me. Well, not me, my son. Who is 12, and has had Chronic Fatigue Syndrome (or M.E.) for two years now.

Jolly, No.1, Boy and Pink – aka ‘The Four’. One place, one time, sitting still. Now THAT’s a rare sight to see.

He was a normal, bright, funny, annoying 9yr old, with ambitions to be a rock star. Or an architect. Either/or. Christmas 2009 he had a run of tonsillitis, and didn’t really seem to pick back up. He had a couple of weeks off in January, again in March, seemed to feel better over the holidays, but simply wasn’t well enough to return to school after Easter. His throat glands were wider than his jawline and visible across the room, he had lumps in his groin and armpits, he would sob with pain in his joints, was sensitive to noise, couldn’t stand company…

The GP said it was a virus… but as the weeks went by more and more blood tests were done.

The tests kept coming back negative, but our child didn’t get any better.

Where had our shining boy gone? In his place we had a stodgy, moody, pale, angry boy, crying through the nights in pain and sadness.

By the beginning of June the GP had hit a dead end – she finally let on that they had been looking very hard for Lymphoma, but had (thankfully) found nothing to physically cause the symptoms, and so she passed us on to the paediatrician.

More scans, more bloods, more x-rays… and finally we met the Consultant in July, who immediately diagnosed CFS.

The shock of the label was balanced by the relief of a diagnosis at last, of a finally knowing WHAT was wrong with the shining boy who had changed so very much in the last 5 months.

I don’t think we really understood, then, what a long road we had ahead. What a huge impact it would have on all of our lives. What effect his illness would have on the childhood of all our children, not just his own.

But it’s two years on, and we finally see the light ahead.

He has an understanding and maturity beyond his years. He understands his limits, he understands the price he will pay if he chooses to visit a friend and use the trampoline, or go swimming, or have a nerf war, or play on the river… he understands that for every hour of fun, he will no doubt endure a couple of nights of sleepless pain, and days feeling sick, clouded by a frustratingly dull-witted brain.

He understands that sometimes, it’s worth it.

With Blue. Who doesn’t like hats. Obviously.

He is now in High School (having missed the last term of Yr 5 and an awful lot of Yr 6), and just since Easter is attempting a full day in school. Most days. He doesn’t do PE, and he doesn’t do a full day of lessons yet, he simply uses the extra study room to catch up on work missed and do his homework while his body adjusts to the effect of a full day.

He gets called ‘special’. He gets called ‘the fat kid’. Other kids happily tell him there’s nothing wrong with him.

He’s developed a tough skin – though he’ll quietly tell me of the taunts,in the quiet of his room late on the nights he can’t sleep. Thank goodness he has a large bunch of lovely friends too.

And sometimes he simply retreats to his room, plays his stereo at full volume, and we hear his voice crack as he bellows Santana’s ‘Just Feel Better’…

“I’m gonna try anything that just feels better
Tell me what to do
You know I can’t see through the haze around me
And I do anything to just feel better

I can’t find my way
God I need a change
And I’d do anything to just feel better
Any little thing that just feel better”

He plods through the bad days, laughs through the good ones. And thankfully, the good ones are winning. With a little luck, come September he’ll be starting a new year at school looking like every other boy on the verge of teenager-dom. Hoo-bloody-rah.

(You can read more about our family’s relationship with childhood CFS here – you might want to start at the back and work forwards)

You can read more on M.E. / CFS on the AYME website here.

 

 

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Author: Laura

A 70's child, I’ve been married for a Very Long Time, and appear to have made four children, and collected one large and useless dog along the way. I work, I have four children, I have a dog… ergo, I do not do dusting or ironing. I began LittleStuff back in (gulp) 2004. I like huge mugs of tea. And Coffee. And Cake. And a steaming cone of crispy fresh fluffy chips, smothered in salt and vinegar. #healthyeater When I grow up I am going to be quietly graceful, organised and wear lipstick every day. In the meantime I *may* have a slight butterfly-brain issue.

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13 Comments

  1. Goodness, that really made me weep. Good for him, pulling him self through that, and what a tough time you must all have had – hopefully the tunnel will be soon behind you and you’ll be in the full light x x x

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    • Oh, Catherine, no weeping, sorry! It has been tough, but it’s nothing that we don’t all do – keep putting one foot in front of the other, and plodding onwards.

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  2. Powerful, well written post which has drawn tears from my eyes and made my heart ache for you all. What a star he is. I am so glad the good days are winning out! x

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    • Thank you Chris – the worst of days are definitely behind us. *nods confidently* *hides crossed fingers*

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  3. This is so finely drawn and so beautifully expressed. I’m glad he has such a lovely strong Mum, and he sounds like he’s such a wonderful kid.

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    • Thank you Vix. The compliments would have been thinner on the ground if you’d heard me screeching fishwife at him earlier mind… *blush* But yes, he *can* be wonderful. Sometimes. When he’s not being tedious about Minecraft or Lego…

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  4. Thank you Jen. It’s funny, when you’re in it, you just ‘do’ it. Only looking back now do we realise how hard it was. And how long it’s been, too. But it wasn’t ALL bad, there was fun stuff too – he didn’t stop being 10 or 11, after all. And then of course there was the countless hours with nothing to do but build Lego or watch Top Gear re-runs… *rolls eyes*

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  5. Jeepers! And I always though you were some sort of supernatural being for just managing with 4 sprogs, let alone with all that to cope with. Much love to you and yours. (PS For the record, I quite like Top Gear…and lego…do you think your son might like a playdate with me sometime….I bet he could teach me a thing or two about construction in plastic blocks.)

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    • Thank you, Our Lady of Fox. I like Top Gear too – just didn’t really ever see the need to be word-for-word confident on every. single. episode… And Lego has been the saving grace of ALL our sanities, actually *nods*

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  6. Gosh this was a hard, hard read. What a brave and wise chap he is, no child should have to suffer like this and then have the added stress of being teased at school too. It must break your heart every day. He’s a very fine looking chap, handsome isn’ he? He’ll break some hearts (including yours!!).

    I know it’s a very long haul, but I hope things start to improve for him very soon. xxxxx

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  7. I have had this open in my browser to read for a few days and (ironic!) have been having a crud week health-wise so I’m only just getting to comment.

    This made my heart ache, for all of you. So, so similar to my own story. I was eight when I started to get ‘flu’-like episodes that wouldn’t go away. I relate so much to the wondering what is wrong, to the teasing and the ‘there’s nothing wrong with you’, and it is so, so, impossibly hard, when you are so young, and hard for you and his Dad too, as I saw how much it affected our family. My health went down a different road as M.E. became something more and different, but I have watched so many people get better and even for me, health is something manageable now and only a little part of who I am.

    It DOES get better, and will do, and your boy sounds like SUCH a star. It will be and up and down road but it sounds like he has everything he needs to get through it – a good sense of humour and good friends served me well too.

    Thinking of you all with much love. Always here, too, if you want a chat about stuff.

    Josie x

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  8. I am working with an Advocacy Alliance in the US and we are creating a public awareness poster about ME. We’d like to show diversity of age and are looking for a childhood CFS photo. By any chance would you be willing to consider offering a photo of your son? I can provide more information if you contact me.
    Donna

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    • Donna I have replied to you via the email you left – if that’s not the correct one, then just use the contact form on the site.

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