~ And then it got worse :/ ~

Our much anticipated visit with the new surgeon went extremely well

He was a very kind, smiley, gentle man  and the adjustment went well - he found the port easily and added another 1ml of fluid

He charges like a wounded bull, but anyway, hopefully Medicare will be generous with the rebate

Somewhere between our appointment/Coles/home Small Man picked up another cold/flu virus

ANOTHER ONE

What the hell??

24 hours after the appointment and he was sick

This was the first time he had left the house in over a week, no-one else is sick, and no-one has been here sick (lucky for them!)

 I have had to cancel his work experience for this morning ~ postponing it til 'who the fuck knows when' 

 I can't keep him in a bubble but wow ~ this is unbelievable.

God help anyone that turns up here sick ~ I have attempted to subtley suggest this on facebook

This feeling of not being able to help him (aside from the usual cold/flu remedies) is making me crazy

G

x♥x

*~ Downhill Fast ~*

So....

It's been another 'long time' between posts.

Long story short - Small Man has had a relapse, relapse not really being the correct word because it implies that he has recovered from his CFS(Chronic Fatigue Syndrome)/ME (Myalgic Enchephalomyelitis)  - which he hadn't - but this is an extreme worsening of his fatigue following a virus.


He has been unable to go to school for at least 4 weeks.
I have had to make the call to keep him at home until the end of this term (30th May) and hope that complete rest and lack of stress will help.


He is currently sleeping for 12 - 14 hours at a time.


He is barely leaving the house, maybe once per week on average.

His fatigue has not been this profound for years - possibly even since he was first ever sick.


It's scary.


I felt so sad when I realised what was happening.


A: Because he has to go through this


B: Because it means he isn't improving


C: Because it took me a few weeks to realise what was happening

D: Because there isn't s single thing I can do to help him


I am now tossing up taking him back over to see a CFS specialist at the RCH.


I'm just not sure.


To be blunt, I'm not sure that taking him back over to the hospital just to be told nothing can be done is really that productive.
Of course there would be further tests he could have done, but it would simply be proving what we already know - that he has a chronic incurable condition that has so far robbed him of a normal teenage life.


Not sure if I mentioned this in my last post but I grew tired of waiting for his school to organise work experience for him, so I organised it myself. 
He wants to work in radio - so I contacted a local christian community radio station and asked, they responded the same day and asked to meet with us.
We did.
They asked Small Man to write 'his story'.
At that stage they didn't realise that Small Man wasn't able to write his whole story himself, CFS/ME is a combination of physical and mental fatigue, prolonged periods of writing or reading are impossible.
So I wrote it for him.
Wow, that dragged up some old emotion that I had buried.
It felt good to get it all out.
22 pages or someting like 6,000 words later and it was done.


We have been for another meeting since, they are happy to help him, happy to work around his illness and want to give him a few hours per week work experience.

Thankfully he has only had the one session so far, and late afternoon which is his best time of day.

At least it has given him something to look forward to, however bad timing with this virus and the fatigue that has followed :/


G
x♥x