~ Just To Clarify ~

So I went to bed extremely sad last night after writing my previous post, I was also angry and worked up

It has occured to me the main thing I am so frustrated with is this:

Small Man has been suffering with this condition for 6 years now

Why can't family (from both sides) take the time to find out a bit about it and at least have an informed opinion ~ instead of constantly saying the wrong thing and just basically pissing me off and constantly putting me on the defensive??? 

Aren't we dealing with enough here?

Maybe I am asking too much?

Maybe people just want to think they know all about this illness, and therefore have some sort of entitlement to make comments?

What do I do print off some brochures???

There has been far too much focus on school and losing weight quickly

The whole point of school was to give him something to pass the time, but only if he was up to it

We struggled through year 11 but he made it

This year started out ok, but has completely bombed out since this recent relapse


The last thing he needs is to feel under pressure, to push himself etc etc

No, I'm not giving up - I am being realistic

Yes, it hurts like hell that he is unable to even attend one lesson per day, but his health and self esteem MUST come first

The other real problem I have is if this were any other illness we wouldn't be in this situation, but once again that comes down to a lack of knowledge from others - and I am sick of it

G
x♥x

~The Elephant...The Room and All that...~

 ***LANGUAGE WARNING***

******JUST SO YA KNOW*******

 Happy 21st Birthday to my Possum :) 

We had a lovely day at home, a bed delivery, his room has been transformed/decluttered, it was nice ♥

Now where was I?


Yeah....so we have a weekend away coming up 

I guess that sounds like no big deal, two night away....


Unless you have CFS/ME and are in the middle of a major fucking relapse


Then it's a huge deal


No, actually, that's not the huge deal


It's explaining it to other people


That's the huge fucking deal.

NO we cannot switch this shit on and off ~ it doesn't chop and change for the occasion ~ it's there ALL THE TIME

ALL THE TIME

No, it's not just him being difficult

It's how his life is

And currently it's worse than it usually is

And I am scared of making the current fatigue benchmark even higher

I DON'T WANT ANYTHING TO MAKE HIM WORSE

*Oh and then there is the subject of SCHOOL ~ the biggest elephant of them all*

So we have to just work around it

Or it's not going to be fun

And I want Possum to have a good time

And Small Man to have the best time possible

*sigh*

 G
x♥x

~ The Waiting Game ~

This is a difficult place to be

Aside from the Vitamin D deficiency the test results were ok, in fact his liver function has improved dramatically, his cholesterol has improved slightly, as has his blood sugar - this is awesome news I was thrilled to bits...

BUT....

It still doesn't give me an answer or solution to his recent struggle

I just refuse to accept that this is the new benchmark, 14 hours or more of sleep every night - and all because of another virus??

My patience for this condition is at an all time low

I will get over it I just can't accept that this is his life at the moment
Very hard when friends kids of the same age are off overseas and whatever, and here we are planning in advance the lack of activity required for the lead up to a few days in Hobart
Or the realisation that he isn't ready to go back to school Monday with the start of the new term
Yeah I guess I am bitter and angry at this bastard of a condition, but I don't let on anywhere but here, and in my own thoughts


It's a catch 22 - you are praying nothing comes back in the test results but at the same time hoping there is something simple that can be fixed easily


*sigh*


I think he is going to need to see the CFS/ME specialist in Melbourne in the next few months


In the mean time the Vitamin D I ordered was just the ticket, he is allowed 40,000 iu per week, which is one per day until he builds up
I am so hopeful this will help, even just a little bit

Aside from that we have to 'wait and see how he is in a few weeks time' then go back to the GP

I dunno :/

G
x♥x

~Ohhhhh!~

I rang the doctors surgery yesterday - very low vitamin D level

Which surprised me because the last test he had done only a few months ago his level was fine

We will see our GP Friday to discuss the other results

Coincidentally I had just ordered some vitamin D supplements for Possum that are 5,000 iu - most of the over the counter/chemist ones are a maximum of 1,000 iu so they will be handy.

Both sons have had severe vitamin D deficiency in the past few years.


Poor old Possums happened right in the middle of his 18th Birthday celebrations...


Did I mention he is turning 21 next week?


Oh my!


G
x♥x

~ Normality-ness~

I'm going to have to assume this is normal

The way I have felt for the last few weeks

The swinging emotion of the whole situation

Trying to appear 'the same'

Dealing with it

Staying on top of everything else at the same time

You would think I would be 'used to' all of this by now

I'm not

It's new disappointment

It's new frustration

It's new fear

Every. Single. Time.

Every new tried and failed 'cure'

The discovery of new complications


The knock backs


The set backs


The delays


The worry

The grief

That feeling of seriously not giving a rats arse about anything else.....

He is handling the whole thing so much better than I am.
When he is up (out of bed) he is in good spirits, mostly.
If you saw him between 3pm and 10pm you might almost not realise that he is any different if you didn't know him too well.

*sigh*

G
x♥x

p.s. Surely I could just sit here all day every day in my dressing gown? 

~ Hmmmmm.....~

No test results as yet, and then Monday is a public holiday so won't know anything til Tuesday, providing there is something to know...

Small Man is just the same, he hasn't improved or worsened.

I feel a very slight undercurrent (or maybe I am just imagining it) of disappointment from others (friends mostly) that I haven't been in touch.
Perhaps if a few of them actually contacted me they would know there is a reason.
Or maybe they just don't want to because it's the same old thing, and it doesn't suit them?
If that's the case then they aren't friends anyway, they are acquaintances therefore not worth my considering.

I avoid contacting people because it makes it harder having to explain what's going on - so really just another vicious cycle.
Small Man is my only concern, I don't really have any energy left for anyone else, much less acquaintances or family that haven't bothered to ask after him.


They can go to buggery!


If they think this has dragged on for a long time maybe they need to put themselves in his shoes for a few days.


I don't like leaving him on his own when he is like this, and avoid it as much as possible.  
Too bad if it's doesn't suit anyone else.
His sense of time is somewhat skewed, he was telling his friend that he hadn't been to school for about 2 weeks, when it had been 6 weeks.
What if the reality of this suddenly catches up with him emotionally? 
And I'm off having lunch with people? 
Or something equally as trivial....

And yet I have friends that have been nothing but supportive and there for me from day one - some of you may be actually reading this post 

- mwah xx - thank you for 'getting it' and not giving up on me....

G
x♥x


p.s. I am actually fine, and not upset while writing this, just thinking aloud

~*Battery Charger*~

I think he needs one...

I woke him at 1.30pm to go and have his blood test

They got the vein first time....thank goodness....

He was back in bed at 8.30pm

My poor baby :/

G

x♥x

So we saw the GP today, finally.

He has ordered a bucket load of tests.

We go back next Friday.

G

x♥x

~ N.F.I ~

I'm really not sure what to do at the moment

Small Man is still sleeping 12 - 14 hours per night, sometimes longer

He is over his cold/flu virus

But still ravaged by fatigue

He admitted to me yesterday that he feels mentally/emotionally as broken as he does physically

I asked him if he feels our GP could help, and he said no he doesn't

But what if I don't take him and there is something else physically going on?

Or what if I do and he tells me to let him 'rest' and we come home as frustrated and at the end of our wits as we were before we went....or more so....


There is no way he is up to travelling to Melbourne to see the CFS/ME specialist at the moment, just no way.

We are currently trying Astra 8 Immune Tonic, Vitamin B12, D-Ribose, Vitamin D & Vitamin C.
Last night I put him to bed with some of those Herbal Foot Patch thingoes with lots of drops of Oil of Cloves ~ failing everything else at least his feet won't get mouldy.....


Maybe I will just see how he goes over the weekend, and then make an appointment next week some time.....I am also not keen to take him to the doctors surgery full of people that think they need antibiotics for the flu - god that pisses me off!!!


Any input gratefully received. I am usually all over this stuff but at the moment I feel like the first time parent of a new baby, NFI....


G
x♥x

~ 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

 


 

Right Now....

In point form....sorta....cos I am feeling lazy...yet full of thoughts to share:

• Small Man has a new surgeon to see, right here in our city, no more trips 'over there' needed
• He is very close to having lost 30kg - or 66lbs  - he hasn't been at his current weight for several years!
• We have pretty much mastered what he can eat, and have co-ordinated it with when so that his blood sugar levels are stable (otherwise it drops/rises drastically if not managed properly). This can be tricky with a lap band but we have discovered the best way around it
• There is a decent amount of food preparation involved, but sooo worth it :)
• The inpatient program for CFS at the Austin Hospital has been canned. It is supposed to be happening at the RCH, but nothing has been done to start it up - it's just not meant to be for us. I wasn't sure, and hearing this was the confirmation
• Back to college has been extremely tiring - for Small Man and for me
• The schedule is difficult, it takes me 20 mins to drive from here to the college, and sometimes he is only there for an hour and a bit. Some days are spent just watching the clock and driving driving driving. I am very grateful that he is able to go, if only for a short time - but it's hard
•  
• The smelter Big A works at is under threat of closure - depending on a review in June next year
• This will mean many big changes for us if it happens as you may imagine
•  
• Possum is getting loads of hours at his McJob - which is fantastic as there have been ZERO IT jobs to apply for. So many job losses and uncertainty down here at the moment....

•  Work has been far too busy but I am ok with it at the moment (as in not feeling like euthanising anyone), it's extra money I guess
• I have felt like shit for the last two weeks, not sure what is causing but fairly sure it's sinus related and I'm sure I'll live.
• I'm tired

G

x♥x

The Post That Never Was....

I don't seem to have had a quiet moment since that day in October that we received the news we had been waiting for forever 
http://blackstonemyst.blogspot.com/2011/10/finally-finallly.html
I can't write when I am surrounded ~ and I have been surrounded

Not in a bad way ~ just in a constant way

So a summary of Small Mans progress for you rather than the blow by blow story

Since starting his very strict pre operation diet mid October, and having had two band adjustments/fills he has lost approximately 25kg - the first 20kg was rapid - the next 5kg has been at a more anticipated  pace

We have to say approximately, it may actually be more but we didn't have an accurate starting weight (he was too heavy for my scales)

We have however had to drill another hole in his belt, and there are t-shirts and shorts that he will never wear again! 

He is feeling good, no change to his CFS but then we knew that didn't we......

We are due to go to Melbourne again mid February for a band adjustment - which I am thinking at this point he may not even need, and may need to be rescheduled. 

The band tightness seems to be just right for him. It would be a waste of a trip I think, I will need to decide next week and see if we can change the flights....they were cheapies, so it's all good

Possum is going well at his McJob - we are not supposed to mention their actual name on FB or on a blog etc - so I will let you guess where his McJob is....

The last major job knockback actually floored him. 

He was quietly devastated, and so was I, for him, I could see his self confidence shatter into a million pieces.

It was then I decided that after 8 or 9 months of constantly applying for jobs, and being rejected, that he needs a break. 

So I have stopped applying. 

Unless something wonderful comes up ~ then no.

 He is not the same boy that left HJ's to start his traineeship.

I would prefer for to him work where he is and build up his self esteem again. 

And this particular workplace is designed for it.

I have been very impressed by their methods, and I'm not easily impressed these days let me tell you.

He has also been getting quite a few private IT jobs, from the basic to the slightly more complex it is helping keep his IT muscle flexed for now :)

I am about to find out if I am totally insane.

Another manager has quit here in the north of the state, leaving just the two of us for approx 100km.

I have inherited some of his team. He wanted me to take all of them. I'm not that hard up for stress so declined on a few......

We have our first delivery coming on Wednesday.

I have had to return to weekly ordering, as much as I didn't want to I will have too many ordering to manage to pack it all fortnightly.

Wish me luck.

I might need it...................

Big A is currently approx 2.5 hours drive away camping with friends. 

I have been down, come back, and then been down again for a few nights at a time. 

The first time I took Small Man, the second time I went on my own. 

It was nice to get away, the break from technology always fares well with me.

I spent some time with a different group of people which was nice also.

I reckon I will even go for a few nights next year :)

This is where we went swimming:

 "Little Blue Lake" - panaromio.com

 Pretty hard to take don't you reckon :) It's called 'Little Blue Lake' - it was amazing!

So that's pretty much it from me,

Love G 

x♥x