~ 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