parentingcfs

Navigating adolescent CFS

The universe March 29, 2013

Filed under: Uncategorized — parentingcfs @ 2:12 am

Our girl woke feeling very sore and achey in her limbs this morning with a headache too.

It’s always a little scary when new symptoms present. Your mind races through everything that’s happened in the last 24/48 hours, thinking about possible triggers.

And always in the back of your mind lurks the ever present thought that there is something else wrong with her that has been missed. In fact, that last is essentially true as one knows exactly what is going on in her body. Which is why you think about the previous 24/48 hours in case some clues lie there so you might just might be able to stop it happening again.

The two lovely friends from high school came by yesterday and stayed for 2 hours. May have been a little long so I’m wondering if these new symptoms are from overdoing it. Usually our girl has a sore throat when she has overdone it but not so this time.

Anyhow I really just wanted to post to thank the universe as she is now at least propped up in bed watching the UK ‘Miranda’ comedy that a good friend lent us in the hope it would bring some laughter sometime when needed – and now our next door neighbour’s cat, a beautifully friendly marmalade boy, has wandered in and curled up on our girl’s bed. Isn’t that wonderful?

Hope today is a good day for you.

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Cycling! January 5, 2013

Filed under: Uncategorized — parentingcfs @ 7:10 am

The view from the upward side of the roller coaster is so nice. I love it here. Can I stay? Please? Please? Although getting to the top and staying there would be even better!

As you can guess things are still going well here! Summer holiday time and all that so it is the time when things are most likely to be good….because of the weather and relaxed environment. Actually I don’t really know exactly why..just guessing!  However it’s far from guaranteed that our girl can do more at this time, especially after the terrible winter, so we are revelling in this (hopefully not temporary) improvement. (Power of positive thought and all that..from me not the gorgeous girl who is nearly always positive)

The big news is….drum roll please….that after the outdoor Christmas Day we haven’t really looked back. We’ve had a couple of necessary quiet days but she rallies quickly and has left the house more than she has in months.

And….wait for it…she rode a bicycle for two days when we were visiting our favourite holiday island!!!!!!! Like…. AWESOME!!!!! The second day was ridiculously hot and we tried to persuade her to settle for a short ride but no, she wanted to go to a different beach 5kms away, up hills. By the time we got there she was not in great shape. The whole two days we found frequent reasons to stop and insisted on rehydration but this ride really was too much. Anyhow, we lay in the calm, cool shallow sea for an hour and pondered our options. We were a little stuck. 39 degrees celsius and rental bikes. In the end our brave girl decided she could probably do it with her iPod music in her ears… And she did do it, luckily mostly downhill on the way back so lots of coasting (or gliding as she renamed it!)

The next day was a quiet one but no massive crash..at least from my point of view. I’m sure it was really important that we prioritised fluid and food the whole time, and had the BP medication and the new herb regime. Without any one of those I suspect it would not have happened. 

Anyhow, here we are 5 days later. Yesterday was a quiet day in, this morning we all went to see some old friends for a couple of hours. It is hot again today and our gorgeous girl has just decided she’ll skip the movie we’re off to see with her beloved big cousins shortly.  So I must rein in my enthusiasm and remember it’s all baby steps. Baby steps forward are just so welcome, I can’t tell you.

Shout out to our lovely friends the Barnies who hosted us this morning. Our girl seems glad she came and we all loved the catch up. Happy gardening and see you at the cricket! x

 

Update on what’s helping. December 26, 2012

Filed under: Uncategorized — parentingcfs @ 4:10 am

Well, here it is post Christmas and I have much to be grateful for. We spent Christmas Day by the river with extended family. My 11 year old boy spent most of his time in and out of a canoe and was as happy as the proverbial pig in mud. No mention of leg pain. Very very tired today but he has missed a bit of sleep these past few days so we’ll see. As I’ve said, dry needling from the osteopath has really helped him, he’s also been taking supplements.

Meanwhile our gorgeous girl came to the river despite the heat and lay on a rug READING A BOOK most of the day!!!

This beautiful day that our kids could enjoy was the biggest gift of all. I gave our girl more frequent midodrine than usual (we are in the process of increasing) and I’m fairly certain this is helping. She is also now had licorice root added to her other herbs and I’m sure this is having an effect too. Also the cranial osteopath we’ve seen has helped her body get a little more back into sync and the targeted clinical pilates has made her stronger. She seems more herself, despite the hot weather. My life seems to be an endless round of cooking nutritiously and making sure everyone has taken their tablets and potions! But I’m so happy to be able to help them and I know this stage will not be forever.

In a few weeks we’ll have to sit down and work out how she is going to approach the new school year. Does she think she can up school attendance from one lesson to two or three a week? Which practitioners does she want to continue to see (as she may prefer to use the energy the appointments take for school or social activities)? Would she prefer to trade me in for another mother? Oops how did that last one slip in?!! Parenting a sick teenage girl has to be one of the most beautiful and most confronting relationships there are! At least i know how she REALLY feels! Or do I??? Biggest gift i ever gave her and myself as we hit the teenage years… I do not need to respond to every comment or angry word..sometimes it is the most powerful message of all… ie let’s move on, neither of us needs to waste any more time on this discussion right now!

So that’s us for now. I feel hopeful again…the sunshine and Christmas cheer helps i’m sure. To all of you out there who are not on one of the top curves of the roller coaster today, my thoughts are with you.

 

So much thinking, so little time! December 16, 2012

Filed under: Uncategorized — parentingcfs @ 3:46 am
Tags: ,

Hi all

Another week in the Wilson house and no new illnesses..phew!! You know, look for the positives and all that!

No seriously the great news is that our incredibly brave young man went back for a second dry needling appointment and it seems to have really helped with the pain. Which is good because it DID hurt as much the second time!! 

He’s still stiff and constantly a little sore when upright but he has stretching slump exercises from the physio and, most importantly, we feel we have some places to go if  (when?) it acts up seriously again… 

Our girl has climbed out of the bad place she was in last week. She is able to eat a little more again and is feeling stronger. Yesterday she had a fantastic experience that I will share in my next post which will be about some of the people who have made a difference recently by their acts of generosity- both small and large – and well, just their lovely personalities!

More soon…. : )

 

Neuroscience and education conference September 1, 2012

Filed under: Uncategorized — parentingcfs @ 1:47 am

I’ve just spent two days at a conference on neuroscience and education!

It’s an area of great interest to me for many reasons and it’s the first time in over a year that I have done something professionally for myself .

I loved every minute. I even got to be the one wired up to check my brain’s response to stress!

And believe me I was listening out for every clue I could get about helping our ME/CFS kids too. Some of the presenters were really cutting edge researchers in the area of neuroscience. One of them taught us exercises for overriding the ANS (autonomic nervous system) so that it (momentarily?) resets the homeostasis in the body.

As you can imagine I was very motivated to learn about this as the ANS is so completely out of whack in ME/CFS.

I tried the first part with my daughter last night and it made her dizzy (she was in bed at the time so no falling)…I found that interesting because it obviously impacted in some way (my poor guinea pig girl!) The leading neuropsychologist whose work was most relevant also has a private practise so I’m going to make an appointment to see him myself and ‘pick his brain’ for want of a better phrase (and cos I couldn’t resist!) I don’t want to subject my girl to yet another appointment until I’ve really talked it through. As you know I’m always looking for ‘fixes’

There is more and more hard evidence coming through (now that we have more advanced brain imaging equipment) that we are at our healthiest when living in the moment. And the power of mindfulness and meditation are inarguable now. The science is in, it’s just going to take a while to get the word out so that it’s adopted into mainstream medicine.

I’m going to go right out there and hypothetise that (one of) the reasons this illness is seen predominantly amongst ‘driven’ people is that they have the wonderful brains that allow them to relive experiences and learn from them…and anticipate how to be more successful next time…and by doing this they are more often putting their bodies into a state of high alert (because of the chemicals the brain releases at the time) that makes them vulnerable to whatever the other trigger(s) are with this illness.

And that this would be why most people get immense benefit from employing mindfulness/meditation strategies?

Now I’m just putting this thought out there as a work in progress. I am by NO means arguing that this is not a physical illness, just pondering aloud that this may explain the demographic affected.

Any thoughts?

 

Nerve Tension June 18, 2012

Filed under: Uncategorized — parentingcfs @ 6:08 am

Today we saw our wonderful physiotherapist/yoga therapist again.

In particular we wanted to explore the possibility of nerve tension issues.

The latest Research 1st article had given us some more information on what to look for. It’s really worth a read but I will very briefly summarise the points pertinent to today’s post.

Basically Dr Rowe of John Hopkins in the U.S., in continuing his search for answers to help the somewhat abandoned ME/CFS population worldwide, has set up a study to examine the hypothesis ‘that some form of neuromuscular dysfunction may underlie CFS, an understanding that might also help us understand the connections between hypotension, tachycardia and nerve sensitivity.’

This hypothesis has come partly from the observation that “the classic CFS symptoms (fatigue, cognitive fogginess, lightheadedness, etc.) often seemed to get worse after a physical therapy evaluation that strains muscles and nerves. Even raising the leg of someone who has this subtype of CFS can make symptoms worse, sometimes for up to 24 hours.”

As I may have mentioned previously, I have heard of a girl in the U.S. who has recovered substantially after physiotherapy under Dr Rowe’s guidance, where nerve tensions issues(amongst others) were addressed.

What we found today was that our girl has significant nerve tension in both legs and her right arm. Our therapist, M, was particularly struck by the lack of movement in our girl’s right wrist.

As you know our girl is of the tall, slim body type and has grown at a tremendous pace over the last 2 and a half years. M said that this nerve tension could be linked to growth, deconditioning or directly from the illness…if I understood correctly. I will send her a link to this post so that she can correct me if necessary! Whatever the cause our girl can do some very gentle exercises to help herself.

M had previously asked our girl to think of a goal. Today our girl announced her goal would be to be able to play piano again. She finds she gets too tired from sitting at the piano to practice adequately so has given up every time she has attempted to restart this beloved pastime. M has linked the nerve gliding exercises in with piano practise. Our girl is to practise for a minute or two until she feels ‘bad’ then lie down in various positions and with some different movements for 5 minutes, then practise again and chart it all to see how it goes. (Obviously the OI is something that is being addressed here too, aided by the Florinef)

It all makes sense to me and our girl seems to think it sounds ok so we will see. We will hope that our girl fits in to the subset that Dr Rowe says ” almost always stick with (this kind of) physical therapy because it makes them feel so much better.”

I sure hope we’ve, at last, found the RIGHT physical therapy. I’ve got a good feeling that this is another significant part of the puzzle. Dr Rowe is THE BOMB!

No doubt my precious girl would tell me off for attempting to use slang but I can think of no other words that adequately some up my gratitude and admiration for this doctor who has stuck by ME/CFS patients and continued to search for answers.

Hope you’ve found some answers for your life today.

 

 

Did I really just hear that??? April 17, 2012

Filed under: Uncategorized — parentingcfs @ 2:49 am

This morning our girl didn’t feel tired before school. This is HUGE!!! She still can’t exercise at all or push herself too much without being exhausted and sick but whoa!!!!! It was just so great to hear her say that for the first time in 15 months!