Saturday, 3 October 2015


Sorry for those involved in early morning banter over Messenger!   I was sharing pictures of my rapidly deteriorating hair line with those that I thought MIGHT be up so I apologise if I got some wrong!  Anyway - it was amusing for me at 2am in the morning....

Usual morning routine. 6AM INFUSION and bloods.  Tried to get back to sleep and dozed until 8.30 breakie.  Dr F came in (yes - it's Saturday) and happily went through results.  He's stoked.

Improvement from yesterday and very happy:
Haemoglobin 106 (so close to normal)!!  (120-160)
Leukocytes 8.12 (excellent)
Platelets 345 (excellent).

So that was all fabulous but ....I feel ABSOLUTEY SHATTERED.  My legs are so shaky and I am incredibly weak.  I need to hang onto to everything to walk about (lucky I live in a 3m x 2x box)!  He explained that this could be due to the return of the perky period but also probably due to the reduction of steroids can cause this.  Also just the fact that I have been immobile for virtually 30 days.  He said it will recover and not to worry.  This is common Mary.  It is fine.  Just do not try to much and fall.  RELAX.

I am reminded of my fellow PPMSer who at this stage was striding (not really but you know what I mean) down the hallways - he was friggin' awesome +++....frustrating for me but I do understand it's each to his own and most of us girls have felt more tired than before. 

So (for once) I listened to my body.  I lazed on the bed for almost the entire day.  I popped into the lounge at one stage but no one was around so I crawled back to bed for a nap....very 'un-Mary'....

I can't get over it ...just totally shattered.  Don 't get me wrong - I don't feel sick or unwell or anything like that but  INSANELY T.I.R.E.D.  It's now just gone 7.30pm (and for those that now me - this is ridiculous) but I'm going to bed. 

I'm spewing because I really want to enjoy every last morsel of time here but today was just not that day.  Do the right thing tonight and hopefully onwards and upwards tomorrow me hopes!  Only 3.5 days to go!!!

PS - Mind you - I did manage to organise a cake for the staff; confirmed a visit the ATM, confirmed flights, confirmed driver to airport, asked Anastasia to print off a heap of things, washed all my 'smalls'   ... so I am STILL ME! :)

But for now - Night Night. 

Actually tomorrow might be different again - I think I am having my 5 hour infusion of Rituximab...or maybe that's Monday...and then Vlad leaves my body forever and ...that's it?!  So well see what tomorrow turns into!

PS - A super heart felt enormous thank you to those that have read my DAY 26:  REMINDER NO IMMUNE SYSTEM UPDATED blog.  That's the one that is continually playing on my mind and stressing me SO MUCH so Spaseesba (thank you) for those that have taken the time to read and take on board.  Also thank you to my Mum who took Piper in for a check up at the Doc's - got her some supplements - all ready for us to go; And to Andy and my family who all had their whooping cough boosters for me and did all those little extra things for my peace of mind.  And Dad for his (no doubt) amazing sign.  I love you all so much.  Thank you for 'getting it'.

Love you Andy, Pipes, and my Griswald family xxxxsxxxx

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