parentingcfs

Navigating adolescent CFS

Getting my head around how life’s changed. September 30, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 1:28 pm
Tags: , , ,

There are a couple of statements I’ve found myself saying repeatedly – sometimes to myself – these last few weeks.

The first is ‘One day at a time’. (sometimes this becomes ‘one hour’ or ‘one step’) For someone who’s like… maybe… just a tad on the… little bit….. need to be in control side…just a tad remember…. one of the most powerful lessons I’m learning from parenting our girl with CFS is how to live in the now. I haven’t mastered it but I’m certainly a lot better at it than I used to be. In some ways it’s like being home with small kids again, you just learn to slow down your expectations of the world and what will happen in one day.

Our girl was diagnosed on June 1st and since then I feel that I’ve been through various stages of grieving. Sometimes…usually around 3am (!)..I feel physically pained and hollow with grief that my darling girl is not experiencing life to its fullest. I obsess about what she’s missing out on (even though logically I know SO many people are worse off than my sweet girl). Occasionally I am still driven to tears in the daylight hours – usually after she has made some matter of fact and terribly poignant statement. (I have to leave the room pretty quickly at those times!) However generally my daytime tears these days are to do with grappling with decision making about the best way forward – which is actually kind of different. Because I find that the other statement I have made repeatedly recently is ”I’ve somehow come to terms with the fact that our girl is probably going to have a different adolescence to other kids and that that’s okay.” I guess I can only move to this place because our girl has moderate CFS not severe. Were she completely bedridden I would be still crying a lot more no doubt.

Don’t get me wrong, I’m still distraught that there’s no cure and no timeline. I guess what I’m saying is that I’ve accepted that things may be different without being ‘over’.  Difficult to explain it seems. Let me elaborate!

School is the biggest issue with the way forward and something it’s not possible to live entirely in the moment with as I need to know what options are available to our girl… However I am open to everything changing at the drop of a hat..and THAT BEING OKAY!

A little bit of background at this point seems helpful for those of you who don’t know us personally. As with so many people affected by this condition our girl was no slouch in the school department prior to getting ill. (The majority of people stricken with CFS led very busy, achievement oriented lives prior to onset. It makes it look highly likely that there is some connection between the neurological make up of  some sensitive, multi tasking high achievers and the cause of this condition..if we could only find out what!).  In May she sat a 2 and a half hour test for a selective class at a high school two train stops from our house and won a place. Prior to this she was most likely going to a private co-educational school that would have required over an hour’s bus trip each way. (Our political leanings were a little uncomfortable with this option and the arguments each way would become a blog on their own!) Ultimately we have decided on the state high school selective class because

a) we think she would thrive in that environment

b) it was how both her father and I were educated

c) it’s close therefore

– should she ever be well enough to use public transport for the trip it would be less exhausting than the other option

– it’s more convenient and better for the environment should we be driving back and forwards to various classes as she can’t manage a full school day

d) we can’t rely on my salary at this stage ( I need and want to be at home for her) and we don’t want to add being too financially stressed to the family ‘issues’!

e) it’s hard to justify paying for schooling if she’s going to be at school very little! (currently less than 30% attendance)

Have absolutely no idea if we’ve made the right decision but at least it’s made (and CAN BE CHANGED anyway right?!)

So, our focus at the moment is to get her as well as possible by February next year when high school starts.

Academically she is already ready for high school which gives us a lovely luxurious 4 month window to just focus on keeping her happy and socialised. And you know what, that may even be what the focus will be for the next 5 years AND THAT’S OKAY RIGHT?! Maybe she won’t be able to cope with any school attendance and will slowly do distance education units instead AND THAT’S OKAY TOO! Yes I’ll cry some more at times and she will too but the world hasn’t ended and we’re all learning to value different things. And that is very different to how I felt 2 months ago.

So that’s how life has changed.  I can look at the future, have very little idea what it looks like but know that, whatever else, my precious girl will be loved and supported and WE WILL FIND A WAY FORWARD EVEN IF IT”S NOT WHAT WE EXPECTED.

Well, today I can.

I still want that cure though. Yesterday wouldn’t be soon enough.

Hugs to all the mums and dads out there whose hearts are bruised with learning that, for whatever reason, for their kid/s, life is going to be harder. And may there be many cures just around the corner. x

Advertisements
 

I love school holidays…and I’m the mother! September 27, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 6:22 pm
Tags: , , ,


CFS exercise therapy

Oh I love love love school holidays!

On school holidays our girl doesn’t feel she’s missing out on things her friends are doing (school!) or somehow letting the side down by not doing what every other 12 year old is doing (school!).

Right now I can see her through the kitchen window working with a friend on an experiment involving turning a glass full of water and covered with a piece of cardboard upside down. Her younger brother is filming them. Ooops, didn’t work that time and water everywhere! Much chuckling.

I haven’t seen her this sparkly for over a week so it feels great. Her friend is here for a scheduled 2 hour visit to make up for our girl not getting to her party last weekend. Birthday parties are pretty difficult as so much energy everywhere = exhaustion. We’ve worked out a tactic whereby I take her for the last 45 minutes so she can give a present and sing happy birthday. Works well mostly but just didn’t get to this last one.

This last crash seems to have gone almost as long as the post 7km walk at Uluru back in August. Today our girl got back on the exercise bike for the first time since last Wednesday and did 10 minutes. (Back down from the 15 that may have caused the crash) Her heart rate shot up to 130 at one point but only very briefly, the rest of the time it hovered between 100 and 112…..weird huh?!

I have yet to check out the monitor for myself..which I will do tonight…to rule out that it’s the monitor not working properly rather than her heart! I suspect all my experienced CFS bloggers out there are thinking ‘no that’s a perfectly normal OI result’! At least we appear to have found a heart rate monitor that fits! Thanks everyone for your suggestions. In the end I just fiddled around with one of the ones we had. Provided it works on the control group (me!) tonight we’re set.

Same as previously she also records a 110+ heart rate after a shower. I did that one manually hence the approximation. It’s weird feeling her little pulse beating so desperately after such a minor activity.

Aaah water glass upside down experiment has worked and been recorded for posterity. Learnings? If friend gets thirsty and drinks the water the experiment doesn’t work! Hehe!

Hope you’re having a good day too!

 

 

 

CFS Therapy Part 5 September 22, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 1:59 pm
Tags: , ,

Another hour plus with our lovely exercise therapist yesterday.

In the car on the way I asked our girl what she would be answering when he asked her how her week had been symptoms-wise and she replied with a four letter word starting with ‘s’. This actually was good to hear – not that I would encourage her to swear at any time – but I knew then she wasn’t going to gloss over the reality! I’m always alert to this as she is the kind of kid who wants to make others happy and that’s something we’re trying to unlearn a bit.

The EP made me feel better as always. (Yeah he’s not just good for our girl!!! Also for her protective mother!) He agreed we would cut back on exercise this week and continue to try to work out a school and exercise level where she can work without getting worse. Unfortunately for this, but fortunately otherwise(!) school holidays start next week so we won’t be getting a realistic picture of whether the new schedule is manageable until school starts again.

Our girl wasn’t as sparkly as usual as she was feeling pretty low and she admitted today she was zoned out for a lot of yesterday’s session. I’m so thankful at times like this that although she has this illness whilst still a child at least she has someone around her who’s still inclined and has (made) time to look after her. And she doesn’t have to earn her own living….lovely Dad does that bit (I can’t work at the moment as she is home 70% + of school time). I read of young adults with CFIDS who’ve returned home to live with parents and other people who are out there trying to make it on their own…or, worse still, parenting others with their limited energy/concentration skills and whilst in varying degrees of pain. Hats off to you guys and may today bring some happiness in whatever form.

Looking back on the week I could see it had been a busy one, on top of the exercise and rather too busy weekend I had also forgotten about the evening trip to see Julius Caesar at the theatre…ooops. It made it unclear as to whether the crashing was from 15 mins on exercise bike or other activities.

New insights from the EP:

1) I mentioned how hard it was to know what was causing her to crash due to the possibility of the time lag being up to 3 days. He said some research had actually shown it can even take up to 5 days but…and this was really helpful…. he was fairly certain in our girl’s case the crashes were happening same day or within 24 hours. This confirmed both my daughter and my observations. It is just SO helpful seeing someone who has seen so many CFS cases (12 years experience) and can make statements like this. When I’m not torturing myself that she shouldn’t be doing any exercise at all I feel we are VERY blessed to have this expertise available! (It would be too simple if I wasn’t torturing myself about something!)

2) I asked his opinion of Florinef to raise/stabilise our girl’s blood pressure. We got into a conversation about licorice root which I am now going to see if we can add to the supplement intake whilst waiting for the next few weeks to pass. If I can find any form of  it  that doesn’t taste like licorice! Yep you guessed, the girl can’t stand licorice!

Yesterday before we went to the EP she did 15 minutes on the bike for the first time since Friday and she’s gone downhill again today after feeling slightly better yesterday. Although I never want her to feel worse at least this does seem to confirm that 15 minutes on the bike  is too much. We shall go down to 10 and see if we can get a baseline happening.

We’re slightly hampered in our ‘manipulations’ of her condition as her little ribcage is too small for any of the 3 heart rate monitors we’ve tried to sit snugly in the right place and get a reading! Will have to stick to manual readings (yes! in this day and age! surely there’s an iphone app????!) This will be a new skill for us but no doubt we will get very used to it! It’s just very unfortunate as it means I have to be involved with her activity when really we’re aiming for self moderating. ( And less scenarios where Mum may be told to back off , not more!)

Anyone know of heart rate monitors made for kids? I guess they must exist for hospitals…..

Hope the sun is shining where you are. Or it’s raining if you prefer that or are in drought!

 

An update September 21, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 3:54 pm
Tags: , ,

A quick update before we head off for our next appointment with the exercise physiologist.

Our girl’s been crashed for a while although not too badly from what I can tell…..

She’s managed school except for Monday just gone, after she did a little too much on Sunday I suspect. She spent 2 hours with her little cousins and a friend in the morning, then went to a festival for an hour in the afternoon, then a birthday party for an hour. I suggested she didn’t go to the festival which only served to encourage her to add a new phrase to the list of comments she doesn’t like, “I think you should stay home and rest.” ! (It’s irrelevant that I was probably right!)

Not having as much energy as she would like to spend time with her 3 year old and 1 year old cousins who, luckily for us, live just a couple of blocks away is one of the impacts of this illness our girl feels most greatly so I guess Sunday fits into the category of tiring but worth it and sometimes it just has to be that way.

Tuesday morning I made the prospect of school more exciting by acceding to a request to purchase a DVD of Pirates of the Caribbean 1! She has just discovered this movie and is watching it (and the sequels) every time she gets tv time at the moment!

We have made a concerted attempt to make increased salt and fluids as attractive as possible by stacking the pantry with pretzels, chips and soda water. (She is not an overeater so this is not as dangerous as it sounds!) There is actually juice in our fridge and often more than one type! We also explained very carefully to her why she needs to stay hydrated and consume more salt and we seem to be having more success. No clear signs that it is making her feel better yet. We’ll give it another 3 weeks before we start pushing for Florinef which seems to work for some adolescent CFS sufferers.(Right now I’ve just unplugged her from the tv and unwisely reminded her to drink at the same time  – why do I fall into that trap??!! Hopefully she’ll return to a state of equilibrium before we leave the house…)

As for the exercise she has just done 12 minutes (gently) on the bicycle for the first time since Saturday. She feels her crash comes from school attendance and not the exercise which is interesting…and confusing as always. We shall see how this next week goes….

Thanks to all you lovely people who are still / have started reading about our journey. I treasure all your support and love the comments x

 

 

CFS Treatment Part 4 September 15, 2011

Filed under: CFS Treatments — parentingcfs @ 2:49 pm
Tags: , , ,

 

CFIDS doctor

So we had our third appointment with the exercise physiologist yesterday.

I had a bit of a meltdown in the morning (not in front of my ill child I hasten  to assure you!) because I want the world to tell me that this particular  therapy is definitely the right path to take. That’s not much to ask surely – a  cast iron guarantee?! The trouble with reading as widely as I do about this  illness – added to my personality type – is that sometimes no path seems the  right path. I just want an accepted path of treatment for my daughter that  the vast majority of the medical establishment agrees on and patients agree  with. And that has research papers to prove its effectiveness. Numbers guys,  I want  numbers! Have to say I’m still getting my head around the fact that  when I ask why these conclusive papers don’t exist the answer I consistently  get is, “Everyone’s different.” I always thought that was the world I existed  in as a graduate of the Arts faculty. I never realised scientists weren’t  operating in a world of black and white facts! Aaah the things I’m learning!

In the absence of this proven path I have to go with the path that seems  most right. I know there are people I respect so kindly following this blog who are pretty concerned that my daughter is attempting graded exercise therapy. Let me assure them I am too! And I am not ignoring medication and supplements. And as an involved and protective mother I really am trying to proceed down this path as cautiously as possible and would not be doing it if I was not feeling so extremely comfortable watching my daughter and her EP interact. Actually comfortable is not the right word. It is literally a joy to watch her sparkle in the one hour consultations. I don’t get to see her like that much anymore.

Without going into too much detail about yesterday’s appointment, our girl is now trying to plan ahead so that she knows when the activities that take energy are going to be and she can pad them on either side with so-called ‘green’ or restful activities. Basically she needs to choose how she is going to expend the small envelope of energy that she has. This complements the approach suggested by the CFS specialist we saw Monday. Her only committed activity at this stage remains school Monday to Wednesday, 9am to 11:30am, and 2pm to 3:30pm, Thursday and Friday. (However she did ask me on Monday whether she could start piano again – woo hoo! She was feeling particularly well at the time so will wait and see if she asks again.)

In addition she will increase to 12 minute daily exercise periods. I still can’t get my head around why the intensity of the exercise is not relevant at this stage (I’m trying I really am!) but it seems to be something to do with the fact that it’s about having fun until she reaches 30 minutes? And again because there is no magic number as ‘everyone’s different’ I guess! She was taught how to measure her heart rate and needs to record it only at this stage. I have talked with her again about the advantage of wearing a heart rate monitor when she is active (thank you the people who have so kindly reminded me of this) She is still resistant which is where I come up against the difficulty of parenting this illness. If it is important for her to be happy and autonomous (which is one thing everyone seems to agree on!) when is it worth persevering with persuasion? Aaaah the joys of mothering! And don’t get me started on trying to get salt and fluids into her (to help with blood pressure issues). I try and sometimes I succeed.

Lastly she now has SMART goals to set and must break each one down into steps. Interestingly the goal she immediately thought of was to be able to swim a squad session. Always great for me to hear her enthusiasm to swim again  as I still worry that somehow all her swimming was due to my influence and I am somehow responsible for this illness. I know I know it’s completely stupid of me to think that way but that’s the kind of thing that just runs through my head at 3am because I am her mother and I think too much…..

My greatest fear is that the exercise will make her sicker in the long run as many people online attest to. The EP made a point of telling us that is NOT going to happen. Twice. I’m still confused and worried! However I really think this guy  has my girl’s best interests at heart, he has years of experience and he certainly believes in what he is doing. So we will go on. Gently.

She is weary again today but still better than she has been I believe. Not as well as she was Monday and Tuesday. One day at a time. One day at a time.

Any thoughts my friends?

 

Could we be on the up? September 14, 2011

Filed under: CFS Symptoms — parentingcfs @ 9:53 pm

adolescent chronic fatigue syndrome

Oooh I’m a little bit excited and I know I shouldn’t be…… it’s just so hard not to be!

I know there’s a cruelty in this condition where things can look up for a while only to find a crash follows but for now I’m going to err on the side of optimism and say…….our girl is looking really good!

First she coped much better in Japan than I was expecting. Then she didn’t really crash afterwards and now her energy levels seem fairly stable and she’s not as bone-crushingly weary as she has been.

How much of this is because of the pacing and expecting less and how much is because the illness has let up a bit I have no idea but either way it’s thrilling!

She has managed the 9 to 11:30am routine for these first 3 weekdays and tomorrow goes to the 2 to 3:30pm shift for Thursday and Friday so that she can be part of the ‘solar boat’ activity at school.

Just before we went to the exercise physiologist this afternoon (another positive session – I will post about it tomorrow) she and her brother started talking about the aerobics they’d done at school that day. I imagine my face was fairly comical as I took this in. She wasn’t sure how much she’d done but when I mentioned she should record it on her exercise sheet she guessed at 30 minutes! She’d also done a gentle 10 minutes on the exercise bike just prior to this information coming to light so I’m very interested to see (and slightly freaked out!) whether tomorrow or the next day brings a crash.

So I guess you can see why I’m just a little bit excited….

I hope you’ve all had a good day too x

 

 

Comments my daughter doesn’t enjoy…..

Filed under: CFS Treatments — parentingcfs @ 9:50 am
Tags: ,

 

adolescent cfs

The Golden Temple and our golden redhead in Japan!

This post was inspired by a 13 year old friend who has been ill with CFIDS for a couple of years now.

He told his mother the other day that his least favourite words to hear these days are:

1) “How do you feel from 1 to 10?’  and

2) ‘Life isn’t fair, is it..’

 

I told my daughter who laughed, agreed and added:

3) ‘Do you feel tired?’

4) ‘How are you feeling right now?’

 

Then she said vehemently that the comment she hates most of all is:

5) ‘You’ll feel better soon’

because she doesn’t.

 

I guess I’d be grumpy too if I felt like I’d had flu for 9 months or more!