Nancy boy. (no offence if your name is nancy).

I have had the common flu this last week.
Because I have little or no immune system it has been really knocking me around.
I am not a sickly person either so of course I think I am only person who has ever been this ill
.
I have tried to use this time in self imposed quarantine to my advantage.
I have been doing some e mails and some writing.
Mainly just being useless.

I am not taking any antibiotics, YET, but I am having lots of green tea with honey and lemon. (my favorite). I don’t drink coffee but I drink tea, (useless information), I used to have about 5 cups of green tea a day. (all with honey and lemon, I think that green tea by itself taste’s foul).

Then a mutual friend put me on to white tea.
For tea heads. It is similar to green tea but has more anti oxidants.

Anyway..

I am not taking antibiotics, because we all know our own body and I am trying to fight it on my own to build up my immune system.
Exposing myself to the germ in order to build up my own defense.

Kind of starting again, in many ways.

Oh. (more irrelevance).
I have not shaved in about 4 weeks, alas, I have a MASSIVE beard at the moment.
I look like nobody owns me.
The beard with a flu, most unapproachable looking. Even bugs are scared of me.

But I like it.

Chivalry.

Well what week.
I found out that my sister is coming home as she has a growth in her ankle that disintegrates bone and a specialist is in Sydney that deals with this.
It will be nice to have her home. Although I’m not sure how long she will be home for.
We will look hilarious together when she starts her rehabilitation.

On Wednesday I had my usual grueling day of rehabilitation and I saw the senior Neurologist that diagnosed me and his team, he said he thinks that there is an improvement.
He also told me I could stop this muscle relaxant I have been taking called clomezapan, which really knocks me out.
The illness makes me weak and tired as it is and that medication just makes me TOTALLY useless, so I am very happy I was told not to take that.

My friend’s sister is in a play so we are going along to that on the weekend.

I meant to say that last weekend at the hotel where I saw the band play there was a pirate party on so I blended right in. I got heaps of approving nods from other pirates at my cane and eye patch.

Information.

For those new to this.
Thank You for taking the time to read my updates, please check it often I try to update it daily.
My condition causes me to fatigue from talking, so writing is a bit easier for me.
You might want to read the updates from the archives to gain knowledge on what has happened so far.
In particular: 17.11.08 & 25.11.08

p

The Gig.

Over the weekend I went to see a band play with a good friend.
A little risky, (dark, people that have had too much to drink accidentally bumping into me or thinking my eye patch and cane is for show etc.), but just something I used to do very normally.
In keeping tradition alive we both bought some merchandise, to help out the band and for nostalgia.

So that was really good.

The next day my Mum, the children and I went to a world class surfing wave that I used to go to before I became unwell that also has a good, safe swimming spot.
It was cool because I got to see some quality surfing go down, (a lot of the top 44 surfer’s from around the world are in town for an annual event held here at this particular beach), and have a swim in the ocean on a hot sunny summer day.

Condition wise I (am obviously far from ok) could be a lot worse and not have any access to the medical system.

Something I NEVER forget.

I had meeting with an assessor from the Government on Friday which is good. Because of my condition being so rare I don’t fit into a lot of their categories, so they then made an appointment for me with a person with a medical background to both meet me and look over some of the notes from my doctors.
So some forward direction from big brother.
Maybe.

That's How I Roll.

Looking forward to a day of getting 'abused' by therapists. (joking).
Bouncing with my homey's on the community services bus.
If you happen across us beep or wave.

There is a good band on this Saturday night. Valentines day.
For all the uneducated, valentines day is every day, not once a year.
Anyway, if you see me hanging back at a gig this Saturday night, please come and say hello to me.

I will be the guy with the eye patch and the walking stick.
For real.

Humble.

Last night I spent a few hours in front of my laptop trying to update this, then somehow I erased it all whilst trying to post.
So this is the newer, revised version and may be a lot shorter due to my affected memory.

Over the weekend I went and stayed with my late father's brother and his extended family in Brisbane.
It was really nice.
He has a Harley Road King called ‘Trigger’, as in Roy Rogers horse. (a thing you would only understand if you were a man).
When my uncle dropped me home he discreetly hid some much needed money.
Which is pretty good considering how stealth I am.
The irony is I used to hide money at my late father’s place.
I believe that if you do a selfless act you do it without expecting any recognition.
I apologize for being so public about this but if you have a relative you either do this for or are thinking about it, be encouraged. Do it!
Be sneaky for a good reason.

I write this as there bush fires burning out of control around Melbourne.
My heart goes out to these poor people.
The fire is taking everything. Relentlessly.
My children and I are going to donate clothes and toys etc.

Just when you thought you were having an ordinary day.

In Pain, Cant Sleep.

Its a little before 4am and I am in a lot of pain. Pain that wakes me up.


I have leared to be numb to a degree. (quite an accomplishment for a moral, strong person like myself, i am living proof that people can change).


Normally I would be knocked out from the medication so I wouldn't mind.

Just a little shorter than a month goes by and I have run out of medication. I figure I will be OK but I would give anything to have had them.
This is inhumane.

The medication costs $150.00 aud. a month roughly. I am wealthy in other ways but not financially.

Since I was able bodied to work I have paid my taxes.
Being a business owner I killed myself, workwise, to pay my staff and pay taxes.
Now I really need help from my government and nothing.

If only the government knew SOME of things I have done.

Just a health care card would help me get my medication.
This whole situation is madness.
I don't know how much longer I can take this CONSTANT negativity.

If only I could speak for myself and be understood. Oh the people I would speak to and what I would get done!

Talk about a situation making you feel insignificant.

I have a Donation account but there is not much in there, (well enough to help out once or twice, thanks to the people that have put money in there), and I put it in an account I cant access easily as I don't want to touch the funds.

I will probably have to cut it in half and pay tax anyway.

Excuse me while I wallow in self pity. It is probably the pain and lack of sleep.
This is like a diary, to give you some insight into my situation.

Thursday!

I am currently having my 3rd lot of treatment. (two days of i.v.i.g. worth $20,00.00 aud.).
It is given, based on results and with permission, from the Red Cross.
Going by the economic climate currently and my SLOW progress I don’t know if I will get approval to have more.
To be honest it can make the strongest person broken and not feel worthy.
Stupid and uncharacteristic of me, but that is human.

I will describe a day of treatment;
Arrive in the day unit for the appointment at 9.
Sit in a big chair all day, so find one first.
Find a vein in either arm as the treatment is intravenous. Needles, you NEVER get used to them.
Have I.V.I.G. pumped through your system constantly.
Sit with all sorts of people while they receive their respective treatments.
Heaps of people getting some cancer fighting drugs and blood transfusions etc.
Finish about 16.

An old friend who used to play the bass in my earlier band works there, so occasionally the silence is broken by us laughing like little girls.

Wednesday!

Today I went to rehab, Wednesday's are hectic and wear me out.

To give you an idea;
I have Occupational Therapy from 10 - 11.
Physio Therapy from 11 - 12.
Speech Therapy from 12 - 13.
Psychologist from 14 - 15.
Busy day!

The Physio got me to walk 10 meters and times me to measure my progress. It took me 9 seconds around Christmas.
It took me 6 seconds today. I REALLY don't make a 10 meter stroll look graceful.

I will always use how I used to be as a reference.

As a result, I will always deny getting better, adapting to my condition as opposed to the treatment working.

Never the less there is an undeniable improvement.

Tuesday!

I swear keeping this up to date is distracting me.
I am juggling parenthood and all that goes along with that.
A relatively unknown illness. (although i am going to do my best to make it cool).
I have lot to say, my story is very interesting, I am trying to write a book.
But I find myself doing something or going somewhere.