parentingcfs

Navigating adolescent CFS

The many joys of water November 28, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 10:10 pm

Water is more popular than ever in our house right now.

As you may know from reading earlier posts, we encourage our girl to drink at least 2 litres of fluids a day to help her to increase her blood volume and counteract the effects of OI (nausea, ‘fuzzy head’, headaches, dizziness, inability to control body temperature etc) Our son has also been having episodes of ‘fuzzy head’ and ensuring he drinks enough seems to have had an effect. (Yes, that’s a whole other story that I will not share right now, suffice to say ‘drinking’ seems to have chased away his symptoms)

The other main reason water is super popular here these days is that we find that when our girl gets in the cold ocean, or the not quite as cold pool, and mucks about for between 30 minutes and an hour, it doesn’t seem to cause her to crash. Somewhere along the line someone has shared with me the benefits of water pressure on her circulatory system…something along the lines that the water pressure means the blood vessels become less elastic and more effective. Whatever the reason, water play seems like good therapy for her and I am going to try to get her to pool or beach as often as possible now the summer is here…..

There’s also a great free app on ipad that sounds like rain and our girl has used this to help her get to sleep some nights. Again the joys of water! And, on the topic of fluids, she is now taking a liquid form of melatonin stocked by the Royal Children’s Hospital which is short release – previously we have been using long release which a) may have been still effecting her in the morning and b) was horribly expensive!

I’ve always loved water. Indeed, what right minded person doesn’t? But there are even more reasons to acknowledge its’ central place in our lives right now. So the rain we’ve been getting here in Melbourne is very welcome as I dwell on water’s superpowers.

As long as it doesn’t stop us getting to the pool/ beach!

 

CFS Therapy Part 6 November 17, 2011

Filed under: CFS Treatments — parentingcfs @ 9:16 pm

For those of you who have been following our experiment with exercise therapy, this is a rather overdue update.

Back in October our exercise physiologist, who is a fabulous, supportive, entertaining guy, went on leave for a little while and hence we had a little break from seeing him.

Prior to his departure he had helped us immensely as:

1) Over a month we carefully documented our girl’s daily activity. This helped us assess how much our girl was capable of and got us into the mindset of how much she could plan to do each week. Essential stuff.

2) He introduced us to the idea of so-called ‘green’ activities, activities that are enjoyable yet don’t tire our girl out. (BTW our colouring books through Amazon finally arrived…they’re great!!!!)

3) He made us laugh and we all know how essential that is when dealing with chronic illness…. well anytime really!

While he was away we continued trying to establish whether our girl could do a set amount of exercise eg 10 minutes on an exercise bike going very gently. What we learnt was , no,  she couldn’t. Even in the school holidays we found she was continuously crashed. So we pulled right back and decided that we would try to establish a school baseline (see post) and ignore ‘exercise’ for the moment.

It was a HUGE relief to get a school routine happening, even though it only resulted in  7 hours of school a week. You can’t ( or maybe can! ) imagine how great it was for our daughter and us to have some kind of certainty back in the weekly plan. Oh, and actually the plan has only worked for the first 2 weeks as after that there was the big fete/ solar boat weekend then Halloween, then school camp (which was, of course a no go). This week we should have been back on track but our girl had a mucked up sleep Monday night so didn’t make it to school Tuesday. However, in my gut, I know we’ve got something generally manageable worked out here. (Bottom line: the 7 hours of school is only manageable if the weekends involve very little activity)

And the exercise? Well, when it came time to see our EP again our girl said, ” I really like him, I just don’t want to do what he wants me to do.” Hmm, well, that was pretty clear, and you know what, I think she’s right. We’ve learnt what we needed to from him for the time being. Without seeing him I don’t think we would have come to grips with the baseline idea so quickly. We also know she isn’t up to any more exercise for now.

Our conversation with our paediatric CFS specialist earlier in the week confirmed what I feel we have learnt. It’s more and more obvious that (very gentle, carefully tailored) exercise therapy is possibly only worthwhile where People With CFS (PWC) are badly de-conditioned.  Our girl still walks a block to school when she goes …not to mention covering a remarkable distance (albeit at a leisurely pace) when she gets to a shopping centre. Aaah yes, the Annie shopping genes are alive and well! It’s possible the local Westfield will soon have to re-floor the route between our favourite car park, JB Hi Fi and Just Jeans….. just saying!

It’s my understanding that even some exercise physiologists are now saying that just getting to school is enough ‘exercise’ for our sick children. That makes perfect sense to me. It seems to me the best research is coming out of the Pacific Fatigue Lab in California but it’s difficult to find the extent of it documented on the web and I’m still trying to get my head around it. How I wish I had studied more biology! Research 1st has just documented some of the important stuff here.

In the meantime we will chuff along with where we are now and enjoy the calm as much as possible before the high school storm hits! We have a meeting with the school next Friday. I’m optimistic that all will go well.

Any thoughts?

 

 

Precious moment. November 16, 2011

Filed under: General — parentingcfs @ 3:13 pm

Had one of those lovely poignant moments today.

Harriet was well enough to have a little shop so we bought her Grade 6 dinner dress.

Looking at her, standing there in the dressing room looking so beautiful, with all that mixture of innocence and ‘growing up ness’ going on, I was struck by how it seems impossible that she can look so right on the outside when her body is playing such tricks on her on the inside. Truly, if you judged by the wrapping, you would think she was a picture of health – if perhaps a little pale.

Roll on the day when the inside matches the outside again! : )

 

 

The silver lining to the very grey cloud. November 11, 2011

Filed under: General — parentingcfs @ 7:03 pm
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Okay let me get one thing straight before I write this. I HATE that my girl is so ill. I wish I could take the sickness for her. I would chop off my right arm – I paused to think about this phrase and I really would! – if it would cure her. But it won’t. So instead I take it one day at a time and look on the bright side where I can because that is the best thing to do.

So I hope you’ll understand where I’m coming from with this post….

The upside to my gorgeous 12 year old having Chronic Fatigue Syndrome:

1) I get to spend lots of time with her.

2) I get to hug her more than if she was well.

3) She still likes me most of the time despite what her hormones are telling her.

4) I’m not worried that she’s out ‘experimenting’ with anything – except whether she can last another 30 minutes at school. (Hopefully she wouldn’t be doing this just yet anyway but let’s face it I know exactly where she is every minute of the day and most often that’s with me! And that’s unlikely to change anytime soon. But if it does that would be wonderful.)

5) I get to watch crap television (and some not so crap) that is occasionally fun and I know lots about the Kardashians…surely that’s a life skill?!

6) I never have to be on a crowded peak hour train at the end of the day just wishing I was at home..because I already am!

7) I never have to iron work clothes.

8 ) I’m learning to live in the now because it’s impossible to know what each day holds – well I guess it is for anybody but I’m only really learning that now.

9) I’ve learnt how to set up and maintain a blog and I get to write.

10) I’ve met a whole lot of lovely people in the blogosphere and become friends with two other wonderful mothers (of kids with CFS) from school whom I barely knew before.

None of this comes even close to making up for what my girl goes through.

However, it’s been a bit of a bleak week here while she missed out on Year 6 camp so I’ve got to hang on to the positives as hard as I can right now.

Any upsides for you? It’s okay to say, don’t you think? Because we all know it’s not an either or. It’s about being grateful for what we have.

 

 

 

 

 

 

 

 

 

Why you will sometimes see CFIDS kids socialising but not at school. November 4, 2011

Filed under: CFS Treatments — parentingcfs @ 1:14 pm

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.