"This time last year"......

29th September 2015

Day 0+348 days


Today marks one year since I was admitted to the hospital in Moscow, and again I will say how the time has flown and what a year it has been!!  (Warning... this next month may or may not be filled with continual memory blogs again and again, okay so the "may not" is crap as of course it will be!!). 

I think about it constantly at the moment and look at the photos of what I was doing "this time last year".  It all feels surreal, the preparation and waiting that went into this amazing and significant event in my life seemed to take so long to arrive and now here we are a year later already.

I would have liked to compare what I did today to what I did this day last year but since I sat in an airport this morning, then on a plane, then sorted bags and did washing, and then was pretty exhausted from not sleeping enough last night my day wasn't all that exciting!  So instead I'll compare it to what I did yesterday, now that was pretty significant compared to where I was "this time last year!".

So as you (may) and I (really) remember, "this time last year" I could not walk very far without extreme difficultly and the use of a cane (and at times also a wheelchair).  Walking around the markets in Moscow was exhausting and the trip to the Red Square although amazing was very brief as it was way too hard.   On the day of my admittance getting from the gate to reception and then to the hospital ward at A.A. Maximov was also difficult to say the least!!



Walking around the markets was tough but amazing to see!

Finally got to meet Dr Fedorenko and Anastasia who changed my life!



The beautiful hospital.

My first room and I was very lucky to have a private room with a couch which Paul enjoyed using!

Well yesterday Paul, Seb and I were in Adelaide and I walked from the hotel to the zoo, around the zoo, to the museum, around the museum, to the mall, through the mall and back to the hotel - a total of 13,110 steps. I think this is my most amount of steps I've stepped in a day since return and if I do say so myself I think this is pretty bloody AMAZING!!!!!

What a great day!

Loved being able to spend the day just walking around!

If this is what I can do after a year, imagine what I'll be able to do after another!

#HSCT #lovinglivinglife #Determined

A couple of things...

23rd September 2015

Day 0+342 days

Tomorrow marks exactly 1 year since we left for our life changing experience in Moscow, hard to believe it and I have a lot to say about it but that's not what I wanted to write about at the moment as I need to make this quick as I really need to get to bed! (okay now I'll take a breath!)

Life is going along at a fast (normal) pace at the moment and I don't want to miss the little things along the way.  I notice these things in the moment and write about them in my head but then forget to actually type it up and these little things mean a lot to me.    

It used to seem so far to cross!

Seb's school (like most of them) is not great for parking and for the Junior school the best place to park is on the other side of the oval and to walk in.  Well when he started at this school, he was new and young so, I walked in there a lot but as the time went by the idea of walking across that oval was excruciating to say the least.  He's older now so he mostly catches the bus or we drop him off but in the last month I've had to walk in a couple of times and I can tell you that walking across that oval now feels Amazing!  I feel like I have this spring in my step and a smile on my face - must look a bit strange at times I'm sure!!

So nice to be able to go walking with the boys!

On the weekend the dogs were going to the vets for their annual vaccinations and I said "how about we walk", love being able to say and do this!



















That's all for now, best I get to bed as we have lots on tomorrow! x

Isabelle is in Europe at the moment - missing her like crazy!!

Gotta love Spring in Brisbane!

Tuesday 1st September 2015

Day 0+320 days

It’s the first day of Spring here in Brisbane and what a beautiful day it is!

This photo I took (yes gotta love a selfie) is of me in the garden on Sunday.  Paul and I have neglected our yard for quite a few months – had a bit of other stuff going on which took priority.  Anyway I was feeling like getting out there as the weather is just gorgeous at the moment.  Warm but not too hot, sun shining but doesn’t feel like it’s going to burn you.  I have to be careful with my 10 month old baby chemo skin as during the first 1-2 years you are prone to burn quicker than you once did.  Considering I didn’t go out in the sun at all last summer my usually olive skin body is quite the lily white at the moment which is very unusual.  Living here in Queensland and bringing our kids up here we’ve always been pretty conscious when in the sun for extended periods of time, starting the teenage battles now with Isabelle who wants to “get a tan”..  Remember the days when we used to use that Coconut oil when at the beach!  Good thing for me I was living in Victoria so using it didn’t happen too often since summer didn’t last too long – won’t be telling Belle about using that!!

Anyway as usual I digress and go off in my own little world.  The point of the little post is that I went out on Sunday and did some gardening.   Photo of me that I mentioned back at the start is me wearing one of Paul’s old work shirts.  This used to be quite a common occurrence back when I used to get out in the garden more often so it felt like a little bit of a milestone worthy of recording!!  Yay for me!!  When Paul realised what I was doing and came out to help he realised the mess I was making which in the past would result in me hacking up the garden making a mess then saying “I’m exhausted” and leaving him to it.  Well this time I actually helped out to the end, well almost to the end, I did leave him to do the lawn mowing.  So much nicer doing these things together instead of him having to go it alone while I pass out on the couch.  I’ve said it before but I’ll say it again “it’s just the little things that we want to be able to do again!”.

This past couple of weeks feels like “MS, WHAT MS!”..  Feeling like a normal family again doing normal everyday things without hesitation, boy how I’ve missed that!

(Note to self:  The date on this won’t match the posting date but I wrote it on the 1st September and hadn’t got around to posting.  I think I refrain from posting thinking I have to always do it for the wider audience when I really began this for myself so I’m going to try and write more for me again!)

 

"How lucky am I to be exhausted by being so active....."

28th August 2015

Day 0+316 days 

It's been more than 10 months!

On Saturday night we were in a rush to get to a school concert Isabelle was performing in and had to make a quick stop at the bank.  I jumped out of the car and did a little jog to the ATM in my little heeled boots, smiling and feeling quite pleased with myself.  When I hopped back into the car Paul said the kids were commenting on how well I was moving – Seb (11) says “Mum, you have so much more enthusiasm than you did before you went to Russia”, Isabelle (14) says “That’s because she’s not grumpy and exhausted all the time!”

Crazy Hair Day!

How our life has changed in the last 12 months, it’s still hard to grasp and every day I’m thankful for how much I’ve improved. 

They say that it takes up to 2 years to see the full results of treatment and then that will be your new baseline.  I’m hopeful to continue on the path I’m on and I’m doing the best I can to become as strong as I can.  I've finished rehab now and I can't thank the people enough who helped get me to this strong position I am now in.  I'm so lucky to have found people who care and I mean genuinely care!

So this time last year I spent most days sitting on the couch and expending my energy on what I needed to make sure the kids where fed, clothed, to school on time and happy.  Mum would take the washing a lot of the time if it looked piled up (which was often). She’d take it home and bring it back, folded & ironed, as well as striping and making the beds.  I would do grocery shopping online, (which I still do as it’s just so dam convenient) and Paul would pick up the fresh fruit and veg (or mum & dad would!).  If Paul wasn’t at work or away he would do all the driving around of the kids, especially on weekends and evenings.  I also had a cleaner.  Paul had stopped travelling as much for work, Paul would do kitchen clean up at night and most of the time tuck the kids into bed as it was too much effort for me to go up and down the stairs.  We’d stopped socialising as much as we once had and just spent most time at home.  We were still happy, thank goodness Paul loves me as it wasn’t much fun in his shoes that’s for sure!

And now...  some of the things I’m doing!

• Cleaning the house (I’m not the best at it but it feels good to be able to!)
• Doing all my own washing and ironing – (mum says she feels redundant but I think it’s great she can just come and visit now without having to do everything!)
• 2 Pilates sessions per week - with physio care
• Joined the gym
• Swimming twice a week, 50 laps each time (25m pool, don’t get excited!)
• Engaged a Personal Trainer and had my first training session, I’ll do this twice a week
• Jumping in the car to drive the kids when Paul has been at home!
• Buying the fruit & veg from our local market (this one is not good for the household expenses though especially if I pop in there hungry like today!!)
• Feeling like I can cope if Paul needs to travel for work.
• Walking the dogs with Paul and the kids – not strong enough to hold 2 crazy Labradors at an almost combined weight of 60kg’s
• 10km rides on the stationary exercise bike
• 3km walks on the treadmill
• Entertaining!
• We had a weekend away to a National Park and I was able to hike with the kids and go on a flying fox.  Couldn’t bring myself to climb the ladder up for a treetop view, not sure if that was to do with strength or fear though maybe a bit of both!

I still get tired at times but it’s so very different from the debilitating fatigue I used to get.  The tired I get now is usually self inflicted from overdoing it over a couple of days or I don’t cope well with late nights and since my body clock generally wakes around 6am staying up late doesn’t really work for me.

“How lucky am I to be exhausted by being so active instead of being exhausted after just getting the kids off to school” – my little saying to myself.

My body is still not perfect and it may never be, I still have some weakness, numbness and tingling but that’s okay because what it is now is nothing short of bloody amazing from where it was before HSCT.

Somewhere in my first blogs I explained the way I felt about the title “Be Strong,Be Brave, Be You” and that I felt I was both Strong and Brave as I had to be but it was the You part of it I was struggling with.  Well I have to say that I’m finally feeling like me again so “Be You” feels like it’s happening and that fills my heart with so much hope for the future..  I was going to say it makes me want to sing from the rooftops but my family & friends who know me well would immediately scream “DON’T” – oh yes, my singing is THAT BAD!!

So to finish I just have to say..... I’m Loving Living Life again!!
xx

Seb started ice skating so now I can make use of my jacket
here in Queensland, thinking I might try it soon!!

 

It’s not all about me!

27th May 2015

Day 0+ I'm not sure of days anymore, 7 months and 11 days!

 

Sometimes it does feel like it’s all about me and of course especially during treatment time and recovery but even before that because it was always because of me that we couldn’t do things or couldn’t go places or things were just too hard because “mum isn’t up to it or mum’s too tired”..

The kids and of course Paul have always been fabulous and never (that I can remember) complained about the MS, which of course I wouldn’t blame them if they did as “Ain’t nobody got time for that” – if you haven’t seen the you tube clip then Google that statement so you can hear the voice, it will stick in your head!

We’ve always been open and honest with the kids about the MS and they talk to us and ask questions but today I got another perspective on how Isabelle (13) feels.  It’s World MS Day today and  one of the staff at her school, who has MS, was giving a presentation at assembly today to ask the girls to wear Red on Friday and make a gold coin donation for “Kiss Goodbye to MS”.  As soon as Isabelle heard about it she asked if there was something she could do to help and was asked to say something at assembly as to how MS has affected her.  I thought I knew but I’m not sure I did, here’s what she said................

“Good Morning parents, staff and students. As Miss ***** has told you MS has affected a lot of people across Australia and my mum is one of them. My mum was diagnosed when I was 3 years of age. Just a couple of months after my brother was born. I always knew my mum had it but it wasn't until I was about 8 I understood what it was.

How I feel about it… I’m still not quite sure…

Some nights I have cried myself to sleep because I have been scared… sometimes I don’t even know what to think. Not many people understand that it is pretty tough. Having the person who gave birth to you not being able to do things that she should be able to do is hard to face. Sometimes it’s stressful because I hear all my friends doing all these crazy cool things with their families but having mum with MS it can hold us back. My Mum has had to sit in a wheelchair when we go to theme parks because she can’t walk half of the theme park. It has been pretty tough until a miracle happened. Last year mum was watching 60 minutes. She hears about a treatment in Russia for people with MS. A lady named Kristy Cruise, who was the first patient from Australia to try it out, was on the show and mum hears about it and think wouldn't that be good for me? So as soon as she finds the Doctors details in Russia she emails and asks if she could have a spot to go. The doctor replies a week later and tells her that she would be able to go at the end of September. This was all very exciting at the time but then the cost came to terms. 50,000 dollars. 50,000 dollars was how much it cost for the treatment alone, not for the travelling and accommodation, just for the treatment. The treatment my mum has had is not stopping MS but the aim of the treatment is to halt it. Mum has been back for 7 months and I know that sounds like a long time but it has flown by so fast. Mum is doing so much better as she could not lift her leg up and is now able to and also couldn't flex her foot back but now she can.

It took six tough weeks without both my parents and my grandparents taking care of my brother and I.  It was pretty tough as I missed them so much and was always worried about them.

We really need to raise money for research so a cure can be found. 

I am very proud of everyone and anyone who is surviving with MS, especially my mum because I know how strong she is and that she is fighter.

Please bring red accessories this Friday to support MS and a gold coin!!”

Isabelle age 8, she's only really known me with MS.

This was quite hard to hear and as Isabelle read it to us she said “don’t cry” and Paul and I said we won’t/aren’t whilst wiping away the tears.  So it’s not “just about me” or for any individual, it’s about our family as well. We want to be a part of life as full and active and as long as possible, we just want to be normal!  I’ve been doing so well and I’m so blessed that I’ve improved but my greatest achievements these past few months may surprise people.  It’s being able to walk the dogs with my family, being a parent helper at a school excursion,  browsing at the shops, jumping on the trampoline, not saying “no” to my children to something as simple as attending a music evening, NOT using the disabled parking space, walking along a footpath and not having to worry because it’s uneven and I’m going to trip any minute, making it to the door to meet the delivery man before he leaves because it’s taken me too long to get there so he thinks no one’s home, not being scared of falling down the stairs, being able to go up and down the stairs!  Feeling confident again in myself!!  Then there are the big achievements like being able to walk 3.5km in around 40 minutes – that was a big one and we are planning a weekend away to a bush retreat to go on bush walks, that’s exciting!!

I can’t believe it’s nearly winter – yes “Winter is Coming” (sorry I had to and that’s pretty funny if you have any idea of Queensland weather! **GOT reference if you don’t get it**) and.... I can’t believe it’s over 7 months since I was in Moscow, I’ve got some beautiful friends there right now and it feels strange sometimes as I watch their journeys.... I have this little pang inside that feels like jealousy although that’s probably really not the right way to describe it but it’s the way I feel, it’s like the way you feel about a fabulous place you went on holidays and wish you could do it again, the time in Moscow was so amazing and precious and life changing, the people, the hospital, Dr Fedorenko, Anastasia.....  Not that I want to undergo HSCT again but that time was just so.....   Words can’t describe it...... I know some will understand...................  

I haven’t written for a while, well actually I have in my head, I do often, and I write the most amazing and witty things but then I get distracted and forget to get to the computer and I need to more often as this blog is just as much for me and my memories of this time in my life so I can read it in the future and hopefully it will be of fond (well maybe not fond but...) memories of when I was living with MS!

525,600 minutes - What a Year!!

16th March 2015

 

Day 0+151 (5 months)

Today - 5 months post HSCT – WooHoo!

Today - 43 years LIFE – it’s my birthday!!

1 year and 1 week ago, the 60 minutes episode aired – watching this changed my life!

1 year and 1 day ago, I received an email from Dr Fedorenko saying he would treat me!

1 year plus 1 day ago we said goodbye to my Grandmother......

I was reminded a lot last weekend by my HSCT friends that it is one year since the 60 minutes episode was aired.  How could I forget, I hadn’t of course, I still have that episode recorded on the set-top box.  It was a strange week, we were in the midst of preparing a memorial for my Grandmothers passing and in the midst of this sadness I was also filled with great excitement and hope which I had lost at the time...  What a week...  I remember seeing the ad for 60 minutes and the first one I saw didn’t say what the ‘lady had’ but I was intrigued, not usually intrigued by this sort of journalism but for some reason it struck a chord with me at the time.  A couple of days later the ad came on again but it was a longer version, I remember phoning Paul and saying “You know that lady in the ad from 60 minutes, she’s got MS, we’ve got to watch it!”..  Before the 60 minutes even aired I had found out the ladies name “Kristy Cruise” – Google stalked her (as you do), found her Moving Mountains page, which I devoured and at the same time Paul was looking for any papers he could find, and so, as soon as we’d watched the story we knew we wanted to try and do this as well..  We showed the kids the episode the next morning and Isabelle said “Oh mum, you’ve so got to do that”!!  And then the email was sent to Dr Fedorenko – Am I a candidate and what do you need from me??  The rest, as they say, is history!!  I’ve said it before but can never say it enough – Thank you Kristy Cruise xx

New hair colour

It’s been 2 months since I’ve posted a blog, I find it harder to write these days, need to get back in the rhythm...  I wrote a couple of weeks ago but it started about hair, I thought it was quite funny but now for some reason it seems a bit trivial...  Hair is hair and in the grand scheme it’s not that important but I am still a girl and us girls do love our hair!  Going through the growth stage is weird, sometimes I just wished I was bald again as it looked better than the thin growing hair, Isabelle did tell me at one stage I had a cool Mohawk – not sure if that word fits with my 43 year old self...  It’s thicker now and I have rectified it with a new blonde look, not sure how long I’ll keep it we’ll see how it grows.  I know people used to look at me funny (and I’m pretty sure feel sorry for me) as I didn’t really wear scarves out much as I was too hot.  No one looks any more except at the cool hairdo!!

I’m doing really well at the moment.  I say this in my mind with hesitation though, it’s still not easy and they say there can be temporary improvements and we won’t really know what’s real for up to 2 years.  I feel that my improvements are here to stay as where I have improved it’s been a slow increase in movement and ability not an up and down improvement but you never know and I don’t want to “count my chickens” but at the same time I want to keep it real.  I know people read this (well I think they do) who are heading for treatment and I want to make sure they understand that it is different for everyone.  I was never promised improvement by Dr Fedorenko, I was given a high probability of stabilisation (halting the progression) but since I’ve been living with the MS for 10 years he gave no probability for improvement - that would just be a BONUS!  A bonus I feel so very lucky that I seem to be getting.  I would have been happy with halting but of course I’m ecstatic that I’m improving, just don’t want to jinx it.
I’ve still been going to a Rehab program at a hospital.  It seemed to be a bit slow going but last time I went the Physiotherapist was so excited at the way I was walking.  The reason I felt it was going slow was that every time I went the Physio would basically make me walk the halls, up and down, telling me to – stop dropping my hip, squeeze my butt, heel to toe my feet and then make me exaggerate this onto my toe, slow me right down.  Anyway looks like she knows her stuff as practicing with her and then continually around the house seems to have done wonders.  My knees ache though, probably doesn’t help that I’m carrying too much weight, but the Physio said “no wonder  - your knees are in pain because you are walking properly which you probably haven’t done in a long time” which of course she’s right as I’ve been limping around dragging a foot for the past couple of years!  I can cope with the knee pain as the improved walking is amazing!!

I still have the joint pain, mainly in my hands and feet.  My sternum pain has finally gone thank goodness and my throat and neck issues also seem to have cleared up.  Still have weakness in my hands and not all of my MS symptoms have gone, but most have eased.  MS fatigue is still at bay although chemo fatigue is still here and hits me at times.  Still lots of fluid retention, my ankles have been a rare sight to be seen since Moscow, still can’t wear my wedding rings but I think it has eased a little.

Had a scare with my bloodwork a month ago, I had some extra tests due to the fluid retention and they came back with my Neutrophils really low which meant my WCC was also very low.  My GP called as she had seen a copy and basically said “do not pass go, do not collect $200, go straight to your haematologist” – she thought he may put me in hospital but we just monitored closely for the next week, checked in with Dr Fedorenko for opinion as well and they gradually came up again.  I stayed out of contact again with people, infection risk is high during this time, if I’d had a fever at all it would be straight to the ED.  We’ve got to be careful for some time yet as this seems to happen a lot during the first 12 months.  Vigilant still about being around sick people, almost went to the Rugby this past weekend but after hearing about a measles outbreak there the weekend before decided I would give it a miss!!

Riding the rollercoaster! - although this one was in LEGOLAND!

I’m feeling so very blessed that I’m doing well, I know others having a much tougher time and I hope their Roller Coaster slows down soon and goes up rather than down.  I do have some downs as well  of course but I’m hoping that it’s starting to flatten out (fingers crossed) I know though that unexpected dips can still happen!!!  Isabelle asked me when I’d be ready to go to a theme park, maybe the end of the year, we’ll see – maybe I’ll have a go on a real roller coaster!!  There is a lady who lives in the US who I’m inspired by, she’s managed to go from walking with a cane to running 5km, and she calls it cane25K!  Plus she’s moved up to 10km and also going for a half marathon!  How cool is that – it’s what I’m hoping for!!  Note to self....  I need to make more notes on what happens, 2 months is a long time and I’ve forgotten things, I’m sure there has been more action than this!

Dr Fedorenko, I thank you everyday!  and Anastasia, I'll be back to dance with you one day xx

So today is my birthday, I’ve already been spoilt this morning with presents in bed and I’m also being spoilt with having my husband home for the day so I’m off to enjoy that now. 

I just wanted to leave this with a poem, it’s one my Grandmother wrote for me when I was little, I read it this time tomorrow last year  – hopefully I’ll dance again one day! 

My grandparents, My brother & me

First Concert

Guess where we are going tonight, where the lights will shine so bright?

The time will be exactly eight, we musn’t be a minute late

For the lights will turn down low; Guessed?  It’s Tessa Maunder’s show!

In the concert young and gay is a mouse whose coloured grey.
All will wonder “who is she?”  We all know it’s our Natalie.
At home she dances all day long, we watch her as she hums a song
Practicing, one, two, three and four.  I’ve watched her in the mirror by the door.
She holds her head up nice and steady, her back is straight she’s nearly ready.
Her hands and feet are in position, then off she dances, with precision
She’s only four, and has a long way to go.  One day she may be great we know
Cause I used to feel the same way too.  Good luck little darling whatever you do.

 

OMG I can't beleive it's been 3 months since transplant!!

16th January 2015

Day 0+92 (3 months!)

I have to say straight up I can’t believe it is 3 months already since my transplant, how much has that time flown!  (Can’t believe it Matt, can you?? – she says arrogantly assuming he might be interested in reading my blog!!)
  
So it’s 2015, Happy New Year!!  2014 what a year! - the most unexpected happened and it was hard but we made it and we are stronger for it – 2015 is going to be amazing, I can feel it in my bones!!! (literally – some of you will understand that one!!!)

It’s hard to believe that this time last year we were just returning from a family holiday for Christmas and New Year to Hong Kong, Thailand & Singapore,  – HSCT was not even on the horizon at all, we had no knowledge of it and as far as we were concerned I had MS, was on a DMD for life and we had to deal with it,  a hard pill to swallow (or monthly infusion should I say), I know not really funny.... 


Isabelle & me at Singapore Zoo

I was really excited about the holiday but I was pushing myself to do what we were doing as I knew there would be walking or wheel chairing for theme parks, zoos, city sites, shopping – lots to see and enjoy but I knew it would be hard (and it was).  I was also thinking, considering my deterioration since July 2012, it might be the last holiday where I’m able to walk well enough to do certain activities.  At the time I was a combo of walk on my own (short distances), or with a cane or husbands arm or one of the children’s hands for balance or wheelchair for the longer distances.  I was then on a DMD called Tysabri and hadn’t seen any improvement or stabilisation of my disease so my future looked like it was on a downhill slope in regards of my MS.  

Paul & the kids had to go without me

The holiday was amazing..  I managed to do almost everything, walked as much as I could and then wheelchair when needed.  One thing that stuck with me that I couldn’t do was the elephant ride.  I wanted to go on with the kids and Paul wasn’t fussed so he stayed with the wheelchair, we bought the tickets but as I was in line watching people go on before me I realised that I couldn’t.  You see it was quite a quick change over between groups and you needed to able to push yourself up onto the elephant, well with my leg power that really wasn’t going to end well if I tried so I called Paul and tagged out!  Next time I’ll be able to do it!

I’m not about to write about my whole year I was just reminiscing about where I was at the beginning of the year and I’m still amazed at what has happened.  That turning point in March when I watched Kristy on 60 minutes and found out I had HOPE for the future and maybe we could still do those amazing holidays we want to do.  I know you can do amazing holidays without the ability to walk but when you could and then you can’t you feel ripped off and of course then those are the things you want to do!  Lying by a pool on a tropical island is always top of my list but with my failing legs then skiing in the French Alps or climbing Machu Picchu became top of the list – hopefully I’ll get there now!!    

On my list!

Okay so I have to say I’ve started this a couple of times now over the last few weeks but have not managed to finish as the writing hasn’t flowed or babbled out as it has before.  Not sure why but hopefully third time’s a charm and I’ll get it out this time!  I think it’s easier to write everyday than to write occasionally as trying to remember what’s happened over a few weeks can be harder than what just happened that day..  Anyway I won’t bore you with everything as I have really kept to myself and not ventured out much as I have been very much OCD with my germ protection which has paid off as here I am at the 3 month mark and I’m very healthy indeed.  I saw my local Haematologist yesterday and he is very happy with where all my numbers sit with my blood work so much so that he now doesn’t want to see me for 2 months!!  I’m struggling with that one a bit as it felt like my safety blanket having the visits to look forward to but I know I’ll be okay – I know where he is!!  And I know I can phone or email his assistant anytime and she will get any answers for me if needed.


My bro & me

I’m going to list the good and the bad that’s been happening.  Now when you look it might look like the bad outweighs the good but let me tell you the good things that are happening hold a lot more weight than the bad so really that list is actually longer and that makes the future definitely look brighter!!

GOOD
These are things I can do since HSCT that I couldn’t do before!
• Walking without a cane, I haven’t tested this much on the outside world as I haven’t been out much but so far so good
• I can walk 1.5km on the treadmill, only at 3km/hr but that’s pretty good for me
• I can do 4km on the exercise bike
• Wii Fit – Step Plus, Obstacle Course, Ski Jump (I screamed when I got this one as I couldn’t get my legs to push and snap properly a few months ago)
• Met my Physio from MS QLD and had an assessment (which I’d also done prior to going to Moscow), results were very promising!
• I think my MS fatigue is gone..  I still get tired but I think that’s for other reasons.  I can watch TV until 11pm and stay up late reading a good book – this is exciting!
- Stairs - I nearly forgot to add this one in..  I can go up our home stairs without holding the railing, woohoo!, 17 steps I just got Seb to count.  Still have to be careful on the way down though..

BAD
• Head Heat / Hot Flush - my head gets so hot and then sometimes the rest of my body follows and I have to quickly get in front of the air conditioner.  This is not helped by the fact that it is summer and so hot here and the humidity is ridiculous.
• Sleeplessness – sleeping is horrendous (as Paul can very well attest!).  I toss and turn most of the night and then of course have trouble getting up in the morning.  The hot flush thing makes this worse of course as it happens through the night
• Joint pain – my joints hurt (this one is quite new).  Even my toe and finger joints which makes it hard to push myself off the ground especially since my leg power is very ordinary to say the least
• Muscle pain – this started a few weeks ago.  I only do light exercise but my body makes me feel like I’ve run a marathon.  It’s especially worse when I’ve been sitting down for a while, once I get going it’s not too bad but when I start going I feel like a very old lady (or the tin man!)
• Sternum pain – this one comes and goes and hopefully it will go again soon.
• Swollen feet, ankles, legs – oh joy!  I’m sure this one is made worse by the heat that’s for sure..
• Tears – they still come out of nowhere sometimes out of sheer frustration that I’m not on top of my game.

These things I’ve listed in the bad list, although not great, will hopefully be temporary.  I’ve asked about them on the forums I’m part of and others have experienced similar things and they’ve eventually subsided at differing times.  My Haematologist said some of them could also be attributed to early menopause or temporary menopause so we’ll check that out if they continue in a few months – oh what fun early menopause would be – oh well, worth it in my books!


Hair!

My hair has started to grow or should I say sprout!  I did shave it again since I’ve been home as it started really patchy but now it seems to be growing okay, just a bit thin which doesn’t look great but I’m told it will thicken up over the next few months.  I think it looked better when I was shiny bald than this thin hair look – thank goodness for the scarves, the wig hasn’t made an appearance outside the house as it’s just too hot for me.  Money well spent – I think not!!

My fingernails look really interesting, will have to post photo of them..  They have these interesting lines through them and the bottom part is really light in contrast.  I believe it’s a chemo line and shows the new growth I’ve had since I had the chemo, I kind of quite like them as they look so different!


Not sure if I’ve mentioned before but I’ve seen my Neurologist since I’ve been home and he was really interested in everything which is fantastic.  Not all neurologists are keen on their patients pursuing HSCT, I seem to be one of the lucky ones who has this support.  So when I saw him I talked to him about Rehabilitation and he referred me to a specialist Rehab doctor who I will see next week and begin rehab with – this is very exciting, bit slow with this happening due to Christmas/New Year period but it’s now happening and I can’t wait to start!!
I think that brings me up to date..  School Holidays will finish after Australia Day (26th Jan) so that will be a rude awakening to real life again.  Kids have been amazing with just having a relaxing holiday time at home with not much happening.  They did have a great week with their cousins visiting over Christmas which was lovely and luckily they have had their Grandparents still on hand to take them out which has been amazing.  They’ve been ice-skating a few times with Grandad which they really enjoy – can’t wait till it’s my turn to try it with them!!

I updated my Wii Mii!

The Rollercoaster will continue for some time and even though I’m having these amazing improvements we don’t know what the future holds.  I have to remember that the hope was to halt my MS (which I already feel it has) and anything extra is a bonus. 

We continue to be positive and I’ll “Be Strong, Be Brave and Be You” and I have to say with all the ups and downs, and I know there will be more, I feel more like me than I have in some time!!

Hope your 2015 is starting out amazing!

Nat xx