Sunday, July 20, 2014

A plan (finally)


After my post last week about J's health, I've received a lot of messages from folks asking how the appointment went and what the outcome was.  Some of the messages were showing general concern but a number were also curious about what happened in the appointment and how they plan to manage J's fatigue.

We met with a pediatrician and a psychologist for about an hour.  In that time they met the whole family, spent time talking to J alone and then they talked with Rowan and I alone.  What I appreciated about the appointment was that they were very straight with us.  They weren't critical and were in fact quite encouraging about different things we'd already tried (like waking her up before she'd naturally wake up, getting her to do a small amount of exercise each day).

But they were very clear about what she has to do to get better and explained the plan to the whole family. They also said that some of her other symptoms (like sore knees, a sore tummy, headaches) were a common part of chronic fatigue but they don't know exactly why. She also needs to see a psychologist each week to help her with strategies to manage the emotional feelings that come with the fatigue.

That afternoon the hospital psychologist emailed us a timetable.  You can't understand how grateful I am for that piece of paper.  I find just getting through the logistics of each day difficult enough anyway, so if they'd given us verbal, general instructions I would have found that stressful.  The piece of paper is a non-negotiable.  Rowan and I can't differ in our perceptions about what was 'said' (which is always tricky with the aftermath of these kinds of medical appointments).  J can't argue with us about what needs to be done. It's very clear and specific.  And it's not her parents telling her what to do.


So, the first big change is that she can't lie down all day.  She needs to be upright because lying down is compromising her muscle strength and circulation.  This was very, very difficult for her the first day.  She cried a lot (Rowan dealt with this thankfully because I was at work).  She was begging to be allowed to lie down.  But she was OK about this by the second day.

We have to wake her every morning at 8 am.  She has been waking at 10 am for months.  I had been worried that her sleep pattern had shifted so this makes a lot of sense to me.  She's allowed to sleep in a bit on the weekends.  But during the week she has to get up, get dressed and eat breakfast.

She is starting with three half days of school.  Monday, Wednesday, Friday.  On the days she's not at school she needs to do three 20 minutes sessions of school work (mimicking the three sessions of a school day). She has done almost no school work all year and her excuse is that she can't concentrate very well (but just quietly, I suspect it's because she's not all that interested in it!).  This amount of school will increase over time, assuming she copes with this (I'm a bit dubious).

Every day she has to do 15 minutes of gentle exercise and this is supposed to increase over the weeks too. This hasn't been such a shock for her (we'd already been trying to do that most days) but it has been very cold and windy this week, so going for a walk is not appealing at all.  

How's it going?  Hard to tell.  She's accepting of the structure and seems to be understanding better that she's rarely going to feel like doing a lot of it (this has been part of our struggle as parents - how hard do you push when she keeps saying she doesn't feel like doing something?).  I'm expecting more meltdowns because the structure is quite demanding compared to what she's been doing.

Thankfully we're a fairly routine orientated family anyway, so it's not too much of a shock.  But we do need to be a bit precious about the routine to maintain consistency (eg.  making sure she's woken up on time, gets to bed on time).  Being precious is not my natural style at all, but circumstances sometimes force this upon you.  I remember feeling like this when our eldest was diagnosed as allergic to a whole lot of food when he was a toddler - that suddenly I needed to become one of the 'those' fussy mums to protect his health.  It's just what you need to do to be a responsible parent.

So we'll see how we get on.  I feel thankful for a plan and some direction at this point in time.


6 comments:

Rhonda Mackay said...

One of the best things for you as a parent will be that it's not only your problem to solve anymore. She has this medical support and the emotional support that only qualified people can give best. Having said that, as her paretns, you will know best and if being super strict with this timetable causes stress, you need to feed that back to the health care givers so they can possibly tailor it a bit more. Trust your instincts and rely on these people to help you make it work. I wish you all the very best in this wonderful chapter of not being alone and J regaining stress. Rhonda x

Rhonda mackay said...

I meant J regaining STRENGTH, not stress!!!

Jenny said...

Thanks Rhonda xx

Karen said...

I'm so glad to hear that you have a plan and that it seems to be quite specific in the details :) I guess it's just thinking of it as a slow reconditioning process. Over the past six months where she hasn't been doing much, her body (and mind!) have become deconditioned and you are having to build her up slowly again to get back to where she was before. It's good that you have an external reference point to use with the timetable, I assume she'll get to feed back to the psychologist about how it's all been working as well, so you can get her to take it up with them if she's finding it hard rather than wearing the responsibility yourselves ;)

Praying for you as you get into the new routine :)

lizziethinks said...

Hi there,

I've had CFS for over 10 years now and can empathise with your daughter's situation. It's not fun at all. It's past 2am and I was about to go to sleep but I had to comment as my heart reaches out to you!

Re her difficulty sitting up- has she been tested and treated for POTS and/or EDS? And re stomach issues- I'd highly recommend testing for coealic disease and FODMAP intolerance. These are all very common for people with CFS and I suffered for years with all of the above as they weren't diagnosed and while they're ongoing issues managing them makes CFS a lot easier.

Sorry if you're tired of hearing advice.. I've also suffered greatly so just wanted to share what's been helpful for me in the hope that it could relieve some of someone else's suffering.

Warm regards,
Elizabeth

lizziethinks said...

P.s. Feel free to contact me through the 'contact me' page on my blog (click on my comment name to access blog) as I can't seem to subscribe to comments on here.