Wednesday, 25 November 2015


Well Hello Hello!  I know it's been a while since my last update, but I really don't have too much to report!  I am now at Day+65 which means it was 65 days ago that I had my stem cells transplanted back into my body.

I have been on 'house arrest' since I got home from Russia (I think Oscar Pistorius is doing it wrong!!)  This basically means no visitors, no going out in public other than when necessary (eg Doctor visits) etc.   When I originally came home, after being told my bloods were all normal, I had a few people over (my BFF, my sisters (who stood either outside or 5 metres away from me), Mum and Dad, a friend from work etc) but I was told by fellow HSCT patients who have gone before me - that it was FAR too early to be receiving visitors!  Oops!

So now I have become quite anxious about going out and having people over, even though my Haematologist says it is fine as long as they are not sick.  My bloods are in the normal range and have been since I returned...He also said I was fine to go out but to be sensible (eg no crowds) but I really am quite panicky about it all ! 

A fellow patient and friend (who arrived in Russia 2 weeks after me) has contracted whooping cough and she was following all the rules perfectly so that freaked me out too!  (she's doing fine by the way)...

I have not kissed my daughter or hubby on the lips since returning but have to have cuddles with Piper (oh - and Andy) each night when we are reading or talking about the day etc.  Hand hygiene is my big thing and poor Pipes can't cough without me hollering for her to get the Purell !! 

This week, I have started doing PT with a friend here in my home town.  I feel quite pathetic with what I can/can't do but I also know that we have to start somewhere.  It's incredibly frustrating when (in my 'glory days') I was at the gym EVERY DAY doing 2 classes, treadmill, bike, rower...etc.  I feel like I should be able to walk back in and at least do the basics but everything is so bloody hard and my weights are embarrassing!  STILL - it's great to go and do 'something'.  The gym girls have been fantastic as they let me come when they are closed so there are no other people there.  I love going but am totally embarrassed by my limitations.  Let's hope I can report major improvements in that area in the coming months!  There is a "GTS" machine that I'd love to use but it's upstairs and I don't think I could even get up there at the moment...well, I could but it would be ugly!  :)

Symptom wise, I feel much the same as I did before I left.  Thankfully I no longer feel weaker than before I left but I certainly haven't noticed any obvious improvement either.  Of course, I have to keep reminding myself that the 'promise' of HSCT is to only HALT the disease and the 'win' is that I no longer have MS in my body - how freaking awesome is that!  My Mum, Dad and Andy all say they think I'm walking better but I (hate to) disagree.  It feels pretty much exactly the same...(early days Mary, early days)....

Because I have had MS for so long and the scar tissue/lesions on my myelin sheath/brain would be well and truly formed, in reality it is unlikely I will see big improvements but I pray, hope, pray that I will see enough improvement to get some decent quality of life back - for me that means walking to netball to watch Piper unaided, or walking on the beach for a kilometre or two (or three!), walking out through the surf without falling, buying shoes without stressing about heel height or whether they will fall off because they have no back and my feet can't hold them on (thongs!), wandering around the shops for more than 5 mins.  I would LOVE to play netty again but I know that is stretching the dream a little far....but 2kms on the beach would be just wonderful!  I already have a few ladies I'd like to tag along...with champagne in hand !  :) :)

Anyway - I am at home and mostly resting.  As I think I've said before, I try to do a little job per day and the last couple of weeks have seen me clean out my pantry and fridge, some kitchen drawers, a few more of my daughter's toys, Christmas shopping 95% done etc.  I am also doing some work from home which is a God send (speaking of which I need to login and do some more)! 

So my report is this:  I am fine mentally, happy, etc.  I am a little (lot) bored with my own company and a little (lot) lonely.  My hubby and daughter have been busy every weekend since I returned which would normally be fantastic but, when you're stuck at home, is so frustrating.  They've been to the local show, Christmas parade, my niece's birthday, dance concert, park opening etc.  BUT I know this is but a season and in 12 months time, hopefully I am a different person!

As mentioned, my old symptoms remain (so far) and I feel I am pretty much the same as when I left.  BUT!!  I remain incredibly THANKFUL that I have stopped this disease. 
I am THANKFUL for your support and the incredible year I have had in preparing for my trip. 
I am THANKFUL for my family and friends.
I am THANKFUL for my health (now that I no longer have MS). 
I am THANKFUL for my hubby's patience. 
I am THANKFUL that I am getting Netflix next week (thanks to bigger download limit) :)
I am THANKFUL for my renewed faith.
I am THANKFUL for my wonderful workplace and their support (and for giving me something to do to keep my brain ticking over).

So no matter what, I am thankful that I had this opportunity and continue to pray, pray, pray for some improvement....okay - better log in and do some 'real' work...although hang on...Ellen's nearly on! :)

Take care and hope your Christmas preparations are moving along nicely, you're gearing up for holidays/annual leave, the weather is good where you are and you're happy and healthy! 

For now....Mary OUT!

No comments:

Post a Comment