parentingcfs

Navigating adolescent CFS

This week, in a (rather large) nutshell…. October 28, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 8:33 pm
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Well, it’s been a full on week here in CFS land, both personally and on a research level.

Firstly, our girl has been crashed all week after getting to her school fete last Saturday and a Year 6 competition day Sunday. She understands her illness well enough now that she knew she was going to feel sicker if she attended the weekend events but she was determined to do it. The fete is always a highlight of the student calendar and, whilst she didn’t get to run around like a maniac as in previous years she did catch up with friends, do some activities and make some purchases. From an hour after we arrived she would come back to see me at the stall I was helping with and say, “I don’t want to go home.” Pretty clear her body was telling her one thing while her heart told her another.

Sunday’s activity was a solar boat racing competition. It was because of this team competition that our girl’s routine has involved Thursday and Friday afternoons at school, as this has been when the groups were working on making their boats. Our girl’s group of 4 seemed more interested in their costumes than the actual engineering aspects but they sure fooled us as, in the end, their boat got through to the top 16 in the state. Very exciting. Then, to make the exertion of the day even more worthwhile, their poster entry won them an invitation to write a 500 word essay to win a cash prize! Their faces were comical as they heard what they’d won but the idea of cash seemed to impress them! As our girl was the main author of the poster (and I remember the effort it took her to put it together coherently, vividly) this was a lovely confirmation for her that the quality of her output is still fabulous even though she hardly ever writes extended pieces anymore……….

Anyhow, not sure if the essay will get written since, as I mentioned, the price for all this activity has been a huge whack of exhaustion, increased nausea and headaches and school has not been on the cards. Thankfully we are about to embark on a 4 day weekend due to that most Victorian of events…the Melbourne Cup! Tonight, at dinner, our girl breathed a sigh of relief and said,  “I’m so excited.”

Upon enquiry she elaborated, “Because I don’t feel guilty about not being at school.”

I replied, “That’s great. You shouldn’t feel guilty. You’re SICK” , breathing a sigh of relief myself that she was finally going easier on herself.

“No, no,” she said, ” because it’s the WEEKEND.”

Aaagh. Poor sweetheart. I’ve tried and tried to make being at home and not school as natural and comforting as possible and yet still she tortures herself with what she SHOULD be doing….

Anyhow, and I can see this is going to be a long post – apologies, my CFS week has been dominated by two other new developments. Firstly, in exciting news, Norwegian doctors have had a breakthrough with a cancer drug that seems to have helped a significant percentage of CFS sufferers in a recent trial. You can read about it, if you haven’t already, on the Research 1st website. Any news on probable treatments is extremely welcome as I am ‘meeting’ more and more people whose lives – and those of their families – have been severely blighted by this illness.

Which brings me to my last main bit of news. The wonderful Sue Jackson, whose blog Learning To Live With CFS is simply the most fabulous source of information, has set up a Facebook group for parents of kids with CFS and it’s been wonderful (and sad) meeting many other great parents who have become dedicated carers for their teenage and adult children at a time when our children would usually have been branching out and moving away from us. This group of motivated, caring and supportive parents is a beacon of light in a fairly lonely world and if anyone reading this is in need of support as they parent their CFS child I strongly recommend clicking through to Sue’s blog above and joining us.

In related news, I’d like to make special mention of a parent called Jo who stumbled upon my website whilst searching for anything on adolescent CFS and wrote many lovely comments on my blog in her excitement at finding someone going through something similar to her. I was able to point her in the direction of the support group and she is a very welcome addition. Jo’s arrival warmed my heart… I too stumbled around in a wilderness of no information for a while and it is one of the reasons I decided to blog. Hope your day is going as well as can be expected, Jo. : )

So that’s the week that’s been. Ups and downs just like everybody else. Any news in your world?

 

A pretty normal teenage exchange? October 24, 2011

Filed under: General — parentingcfs @ 2:11 pm
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As I’ve been saying to a few friends recently there are some very strange moments in my life when I feel an odd sense of intense frustration mixed with delight. These are when my girl gives me sass. Why the mixture of feelings? Because when she does it it means she has a little bit more energy than usual and that’s a great thing.

I’ve just had the following exchange with her.

Daughter re enters the room to get glass of water and book from kitchen table. Had flounced out 2 minutes previously saying, “Really good mothering there, Mum!” She didn’t mean it nicely! This is obvious also from the fact that she came to get the glass of water herself instead of imperiously requesting it brought to her as she knows I’m desperate to keep her hydrated and will bring it myself frequently though not always. A major departure from how I would be parenting my preteen were she well!

I venture, ” So when you said ‘such and such’ what you meant was ‘such and such’ ” (Won’t go into details for the sake of her privacy.)

Daughter: “NO! Of course I didn’t mean THAT.” A bit more gentle questioning and finally an elaboration from her (convoluted) of what she really meant.

Me: ‘Oh, I see. I’m not sure how I was supposed to know that.’

Daughter: “Well you just….SHOULD have.” Departs again from room but this time hopefully understanding that maybe her expectations of my telepathic skills are just a little too high…..

Aaaah I love her and all her moods.

 

“It’s just not my time Mum” October 19, 2011

Filed under: CFS Treatments — parentingcfs @ 9:48 pm
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cfs therapy

I love my daughter to bits.

This afternoon she and I sat in the exciting spring sunshine (never guaranteed here in changeable Melbourne) watching my son training for his beloved sport of cricket. The under 14s were training also and my daughter was identifying the boys from her class, in a sort of roll call fashion, to me.

Perhaps thoughtlessly, I was moved to comment that it must be tough for the boys we know with CFS not to be there, training.

My gorgeous girl looked at me, astonished, and said, “Mum, you just don’t get it do you? We’re all right about it. We get it’s just not our time right now.”

Then she smiled her beautiful smile and carried on, ” That’s why it’s so exciting to hear other people’s news like (some class gossip she told me yesterday) because nothing’s happening for us. So we like hearing about others.”

Now I’m pretty sure the boys don’t actually feel like that but ,wow, I sure am glad she does. Even if it’s only temporary. And I’m going to keep colouring in those colouring books with her and okaying trash tv because we must be doing something right. Or maybe it’s all just due to her enormous heart embracing her world in the best way possible.

You have to love the way sunshine makes us feel. x

 

Latest adolescent CFIDS research. October 17, 2011

Filed under: CFS Diagnosis,CFS Resources,CFS Treatments — parentingcfs @ 3:29 pm
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Last month the biennial IACFS/ME conference was held in Ottawa. It’s actually nail biting stuff for us waiting to hear what is tabled as it seems we are at a pivotal stage of research into this mysterious illness and , of course, we are so personally invested and holding our breath constantly (okay not literally but you know what I mean!) in the hope of hearing of new, life changing developments.

I’m not going to go into detail. A full summary provided by the great people at Research 1st  can be found here.

Suffice to say there is still no definite evidence as to causes or successful treatments. However there was some news on time frame. One of our Melbourne specialists Dr Katherine Rowe presented and spoke about her latest research into adolescents. As Dr Charles Lapp summarises on the Research 1st website – Bottom line:  within 5 years 60% reported recovery and at 12 years 88% reported recovery, although one-third were consciously monitoring their activity.  More than 95% were working or studying part or full time.  What helped them most to recover were symptom management, continuing social contact, physical activity, and engagement in education (the best predictor of outcome).  Massage and diet advice was helpful, but restrictive diets and supplements were not.’

It’s been really difficult to find studies of outcomes for adolescents. As I’ve mentioned previously there was a general feeling that adolescents had a greater chance of recovery than adults but the only actual data available stated that only somewhere around 30% recovered. (Sorry I’ve tried to find that source  and post again but I’m running out of time to get this post done before other mother stuff takes over. Anyhow let’s choose to ignore that more negative source now that Dr Rowe’s slightly more cheerful study is published!)

So we will focus hard on being one of the 60% that recovers within 5 years. How will we do this? By NOT focusing hard on achieving anything except happiness. Which we’ll achieve by not doing anything hard. Oh it’s all so confusing! But you get the idea I hope!

Okay, off to think about ‘nutritious but delicious’ dinners. Again. Yee haa!

 

Have we found a baseline? October 15, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 4:15 pm
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cfs therapy

End of the first week back at school and I’m wondering if we might have found a baseline, ie; a level of activity that our girl can sustain without wiping herself out.

Monday and Tuesday she went to school from 9 to 11am, no school Wednesday, then 2 until 3:30pm Thursday and Friday.

The different times at the end of the week have come about because the Year 6s have been working on a special group project but, coincidentally, it seems to be potentially a good routine for our girl. This is because at the end of the week she spends 30 minutes less at school each day and doesn’t have to try to rush in the mornings.

I’m particularly happy to see her not crashing as Wednesday didn’t turn out to be very restful due to lovely and very welcome visitors and an appointment.

Also…wait for it……our girl had a piano lesson! You may remember me mentioning last term that she wondered if she might be able to start piano again. From 8 to 11 years old  she had weekly piano lessons, then at the beginning of the year she wanted to try violin. Whilst she loved violin too, she has found holding the instrument too tiring and stopped lessons reluctantly back in May. She hopes that piano will be more manageable. As I wrote about last week we are on the lookout for more ‘green’ activities and she has played the piano for around 10 minutes each day since the lesson with evident enjoyment! She played for around 10 minutes in the lesson too and said she really started to vague out at the end but thoroughly enjoyed herself. We are keeping it as low key as possible by not doing regular lessons. Her wonderful teacher contacts us if she’s had a cancellation and if our girl feels up to it we go. Pretty perfect huh? I can’t tell you how wonderful it is to hear her at the piano again.

We have steered away from any formalised exercise program..at least temporarily..while we work out the school baseline. It just gets so complicated trying to work out what’s causing the crashes otherwise. She has been on the Wii fit for a few minutes and done incidental walking but that’s about it.

Of course, she still feels unwell – fatigued, nauseous, etc but this week’s shorter, planned school attendances have given her some feeling of control and , of course, the essential socialisation. We have cut out recess or lunch presence because she was finding it too much. If she still feels well with the current schedule in a couple of weeks we will add in a recess or two. Or not. Who knows!

We also had our first visit this week from a ‘Visiting Teacher’, funded by the Department of Education and Training. She can come weekly to see our girl for up to an hour. If our girl doesn’t feel up to working on anything she just needs to tell the teacher when she arrives and she goes away! No pressure but some more support. Good stuff. Also this teacher can follow our girl though the system as long as she needs her and advocate for her at school. Next year she will run an information session with all the Grade 7 teachers. (Though we still suspect our girl will only be doing one or two subjects at this stage…)

So. all up, a positive week.

Hope life is good with you. : )

 

Grade 6 Term 4 Day 1 October 10, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:47 pm
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Beginning of the last term of primary school for our gorgeous girl.

For those of you not in Victoria, our children generally go to the same high school for 6 years so the only time our girl will definitely change schools is nearly upon us.

This is a momentous enough occasion as it is, without the added joys of building new relationships with students and teachers whilst ill and frequently absent, which is what our girl must face. (Unless some miracle occurs between now and February – we’d never knock back a miracle!)

Our girl went off happily enough for her 2 hour stint this morning and is now home getting reacquainted with the couch and her new best friend..the television.

Recently, when filling in a chart rating how she felt about certain aspects of her life, our girl labelled one section ‘Crappy Stuff’ and gave it a 10 out of 10. It took me a minute to work out that she was celebrating the fact that her parents let her indulge in crappy tv shows and magazines because she is ill….something we would have been much firmer about otherwise! Ah well, at least life is good for her in one section! And there was a new knife in the heart  last weekend when she said, “This house is my prison.” We’ll do a lot  to make it as tolerable as possible. I’ve even just acquiesced to her recording the Kardashian wedding – do you have any idea how hard that was?! 6 months ago I didn’t even know who the Kardashians were…and was better for it! Anyway  I held out for a while but when it comes down to it I know it’s a stage she’ll grow out of and hell I just want her to be happy. The sad reality is that the ‘go outside and run around’ option is not open to us!

I am, however, continually exploring possible ‘green’ activities ie; ones that don’t exhaust her and keep her interested. She made some jelly today with the energy burst leftover from school socialising. I’m waiting on a delivery of detailed colouring books..think I’ll get into those too! And at some stage I’ll get some nice watercolours as she’s expressed an interest in that.

So, a good start to the term as far as her mood goes. The last weeks of last term she was staying at school for recess as well but she requested leaving before recess this week and since she wasn’t faring well late last term it seems like a good idea. I even offered her Wednesdays off but she’s keen to try to go so we’ll see.

We had a chat just before about high school, as it is on her mind too now, and she stated that she wanted to go every day of the first week at least to get to know other kids. Sounds like a push and crash recipe for disaster to me but not worth addressing it yet. Three and a half months to go until we must address it.

Only time will bring the answers….

What are your ‘green’ activities?

 

Thank you October 5, 2011

Filed under: CFS Resources — parentingcfs @ 4:23 pm
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adolescent cfsI just want to write a post here about our wonderful families and friends and how supportive they’ve been.

Not one member of our family has been anything but respectful and kind when talking about our girl.

Several of them have written heartwarming comments on this blog.

All of them have understood that our girl is living her life a little bit differently right now and needs to be listened to, praised and supported and that our family activities/get togethers have needed adjusting at times so that she can cope.

No one has told her to buck up and get on with it! (Yes, these people do exist though I like to think their motives are good and they are thinning in numbers as we spread the word of what actually happens with this illness.)

This last weekend we have been visited by my lovely younger brother (Uncle R) and his wife (Aunt M) (all the way from New Zealand) and also one of my sister-in-laws (Aunt S) who is here for her last 2 weeks before heading off on another Red Cross posting, this time to South America. Seeing their quiet unquestioning acceptance of our girl and her needs made me very grateful. Coincidentally Uncle R and Aunt S are the ones who have carried the redhead genes that our daughter now has and it’s nice to see all that lovely auburn together! I wish they were around more.

In addition, I have had opportunities to go out for a couple of evenings lately and my younger sister in law, who is juggling her own young family and returning to work, is my daughter’s babysitter of choice. Not once has Aunt B said, “No, I am too sleep deprived from my own 1 and 3 year old to relief parent your children!” Which would have been perfectly understandable. She is a gift to me.

To all of you, and to my new cyberfriends with their wealth of information and support, and last and certainly not least, to our treasured friends who continue to listen to me when I just have to talk about ‘it’, and who try so hard to ask sensitive questions – and who meet me for coffee when I just have to get out of the house – “Thank you”. You truly know not how much it means.