Saturday, 17 September 2016


OMG this feels sooooo weird being back on here!!  I feel like my room should be brighter...cleaner :) and the food should be more .... adventurous! 

This is NOT my one year update because I want to give time and effort to that post.  I want to really reflect on the year, thank some people, pay tribute to my sister, whose drawn the 'battle card' this year, thank my amazing family, put my hand up to what I need to do better (R.E.S.T.) and update you all on my progress (it's not exciting trust me).

I am back to working 4 full days (about to be 5 again) and I love my job and the people I work with.  Truly - I love it and them.  I'm very blessed.

My daughter is doing something every night so while I'm a tad slack at getting to the gym and doing things for myself (sorry Nikki), my daughter is busy and fit and doing great!

Andy, my hubby has returned to normal husband stuff.  He works 2 jobs and lives with his "Netflix" addiction.

No.  Today's a whinge.  One thing I have noticed since coming out of isolation and lock down on my return  to Oz...I have become SUCH a recluse!  At first it was because of germs and my tendency to be OCD and stress about crowds, hygiene etc... but now it is just because everything remains


As I said above, I love my it.  But unfortunately that is all I do.  I am so frustrated that I haven't got the improvement yet that I so (SOOOOOOOOO dearly) hoped and prayed for. 

My standard line when anyone asks how I am is "Fine. Back to 'my normal'.  No improvement but the procedure has NEVER claimed to improve symptoms and only ever claimed to stop the progression".  So it's been successful.

I knew this CLEARLY when I went to Russia and I can promise you all I have absolutely no regrets (in fact it was one of the most amazing times of my life) but you know....I prayed really frigging hard for just SOME improvement.  Just to walk 'normally' - for a distance .  Not run; Not skip; Not revive my netty career...just to be able to [go for a] walk.  And yeah - that hasn't happened.

I am back to how I was before I left for Russia. 
I am having an MRI next week to confirm that nothing is going on and I'm confident we've stopped the beast, so I'm not stressed about that.

Today was a big Netball / Football day for Mount Gambier.  I LOVE netball ... (although can take or leave football)! and I knew someone playing in just about every game that I would have loved to watch.  In fact my sister was playing her final game.  She's busy kicking cancer's butt in her down time so I really would have loved to have gone and seen her last game before she retires.

But - the idea of walking between courts, toilets, football, food van and even walking from the car to the courts (which would be miles away as 3/4 of Mount Gambier would have been there) was just too much.  I have no walk aids and no one has ever recommended....but I am starting to accept I need ... something.  And That sucks eggs.

I'm trialling a WalkAide machine that might be great.  Here's hoping.  I'm thinking about getting trekking poles as I know of another lady who uses them and pushes out 10km walks! Whaaaattt!

Who is supposed to tell you this stuff?  Seriously.  After seeing someone comment on a forum I'm on, I bought a 'diktus band' online last week - who even knows what the hell that is - but it doesn't work for me or I've bought the wrong one or whatever.  I've had nobody fit it for me or shown me what to do so I've tried following the 1/4 page instructions and well, it's not working for me - I'm doing this all alone.  Should I be researching more?  There's gotta be someone that sees me 'walking' that thinks "Hey! I know what would be awesome for her"...right?  Frustrating much.  So maybe the WalkAide will be great....but I'm going in already expecting it to be another thing that doesn't work for me.

Anyhoo - I've spent the day alone (my house looks amazing) and just a touch frustrated and how much MS managed to destroy my life before I destroyed it.

I've started to think about Summer.  We're going to Queensland and it's going to be hot.  I currently will find it incredibly hard to walk on the beach...or anywhere for that matter.  So I'm stressed about it, whereas in my old life I'd be counting the days and planning day trips, beach days versus shopping days etc.   Holidays / travel stresses me out so much these days...and I love(d) travelling...
Trust me - walking on the beach is so awesome when you're able...but when you aren't - it's a bitch.  I can't even find suitable frigging shoes because I need a closed in toe and a wear to the beach(??!!) summer.  Honestly.  :(

Then I'm thinking about this pop-up bar in town.  That'll be going again this summer and Andy tells me it's awesome.  But I can't go there.  Walking, bar, standing around chatting, toilets + alcohol....does not work.

So I'm frustrated.

I'm not sad, not crying, nothing like that.  I'm just so frustrated and SO ready for prayers to be answered and improvement seen so I can be an active member of my family, community, work, friendship groups and so on.  I want to re-engage with society but I just do not want to do it like this.  Blah.
I seriously need to walk around the Blue Lake with my dad and daughter sometime soon.

OK - that's it.  Mary out.

PS - Well done to all teams today!!!  Hope you're partying way harder than you know you should be!
PSS - APPRECIATE the little things.  Walking, dancing, running, shopping, thongs, converse sneakers....I miss it all sooooooooooooo much. 

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