My Confidence and MS......

18th February 2016

Day 0+16 months and 2 days

This is something I think about often as I go about my daily life now.  It’s my personal feelings and I’m in no way saying this is the way that all people with MS feel as our disease affects us differently and we are all individuals.

I’ve become more and more aware over the past 12 months just how much MS had been taking away from me.  I’ve mainly written about the physical as that was my main issue.   I guess you could say I was one of the lucky ones, as it hadn’t taken away any of my cognitive.  Yes, I had a “foggy” brain at times and ridiculous fatigue which made it hard to focus and make decisions,  but when it takes the cognitive from people well that’s just another extreme of awful.

What I wanted to write about was my confidence, that’s what MS was taking from me.  Day by day, bit by bit it was eroding away.  Those that know me well know that I’m a reasonably confident person.  I can hold my own in a conversation and often voice an opinion that everyone’s thinking but I’m the one that blurts it out.  I can picture some of my friends saying “Oh yes you have!”..  I can talk to strangers, strike up a conversation about nothing (get this from my mum!), make necessary phone calls and deal with conflict.  Well that had changed so much in the couple of years before treatment.  I found that I was walking with my head down, not only to watch my feet placement, but to try and keep myself as anonymous as I could so I wouldn’t get noticed.  I found it hard in conversation, especially with people I didn’t know well, and considering I’d only being living in a new city for a short time when things started to go downhill well I haven’t really made a lot of friends..  Don’t feel sorry for me though, that’s not where I’m going, I have great friends and treasure them (even if I don’t call enough, sorry x) and I do have some lovely new friends close by. I’m also pretty happy with my own company and trashy TV, but the MS took away my ability to put myself out there with confidence.

I’ve read a lot over the years where people living with MS have said “I may have MS but it hasn’t got ME”..  Please don’t be offended by the comment I’m about to make if you have MS and use that slogan but I hate it!.  MS had me by the short and curlies and it was sending me on a path that wasn’t me anymore. 

My confidence was shot!! 

I wasn’t going out unless I had to, I didn’t go shopping anymore (thank god you can shop online!), I didn’t go to some of my kids school events, I stopped going to the pool at the gym because I didn’t want to be the lady who couldn’t pick her feet up properly and stumbled over the uneven pathway.  And although a lot of that had to do with my walking ability it was also impacted by the confidence I was losing. 

(Note:-  I love walking into the gym now with a spring in my step! And not being worried about tripping!!)

I had an appointment booked with a psychologist.  I knew I needed help as my head was on that path where I didn’t know how I was going cope living my life with MS as I deteriorated.  That meeting went a lot different than I had initially planned as by the time I saw him I had seen the 60 minutes episode with Kristy Cruise, researched HSCT, contacted Dr Fedorenko and had my date booked for Moscow.  I was excited about my future once again.

I know Paul was worried about me and he said from the time we knew we were going I was he could see a difference in me as we had a feeling of hope for our future again.  Even if I didn’t get any better at least with treatment I hopefully wouldn’t get any worse.

Now my confidence is almost back to where it once was..  It’s taken a while as I recovered last year but gradually now I feel better all the time.  I feel brighter, happy to go out, happy to engage with people, generally HAPPY!  I know I said this at the start but I really find myself thinking of this often as I go about things every day now.  I didn’t realise at the time how much I was impacted by this but now I do and I’m so grateful that this is something that has also been returned to me through HSCT.

After I write a post I always get Paul to check (for mistakes and shit writing), he usually gives me a glowing response.  My last one he was away so I emailed him and I thought his response would fit perfectly in this post.  He said...  “You missed the magic ingredient - the sparkle in your eyes and your spirit have returned”.

Loving Living Life
Nat xx

(To be honest after writing this blog and getting ready to publish my blog I had to think...  A photo of me was used for the MS bike ride a few years ago, I wonder what they captioned it with? was it indeed that slogan? maybe I was once in that place?, I think I was, hang on found it, the caption on my photo read...  “I have MS but that will not stop me” – well guess I have to eat my words now because it did!!!)


No recent photos of myself to share but I will have one for next blog of my new wedges I'm picking up tomorrow!!

Then and Now...

4th February 2016

Day 0+ 15 months and 19 days!

I think in my head a lot about doing a blog update but I never seem to get around to doing it..  I must do better as I’ve said before I want to have this blog for my own memory as well as for others to read.  Also, as time goes, might be an age thing, but my memory is not so good at times!!  Part of the reason I don't write is I get distracted with other things to and I can do them!  Oh...  and I do have a slight addiction to crap TV!!




My rock, loving living life again with you xx


I thought it was about time I did an update on how I am now compared with how I was pre-treatment and funny thing is as I sat down to write this I can’t remember how bad I was, which has to be a good thing?  Right? Yes, I think so..  I mean I know how I felt and I remember how hard it was doing anything but I can’t remember the specifics.  On the EDSS scale Dr Fedorenko put me at a 5-6.  At a 5.0 you can walk 200 meters without aid or rest and I guess I could do that but fuck it was hard! 

So I looked up the email I sent to Dr Fedorenko back in March 2014 to see what I wrote so here’s an update of then and now..

Optic Neuritis
Then:-  happens a couple of times a year, always recovered from this
Now:- No incidence since HSCT



Backyard cricket at Xmas
(pretty sure I made the most runs!!)

Fatigue
Then:-  Often fatigued over the years, episodes of extreme fatigue where I would sleep/watch tv all day for a week or so at a time.  At treatment time fatigued most of the time if I do anything

Now:- No real fatigue except after a busy day – LIKE A NORMAL PERSON! (insert jumping for joy emoji here!!)

Left Leg
Then:- Numbness all the time although works okay, can balance on left leg

Now:-Occasional numbness (more in the heat and humidity!), not all the time..  Balance is great!

Left Foot
Then:- Numbness some of the time although works ok
Now:- Occasional numbness (more in the heat and humidity!), not all the time

Right leg
Then:- Couldn't lift higher than 10cm without extreme effort, couldn't balance on right leg

Now:- Can lift and kick without effort, so much improvement that I could probably get a job as a “can can girl”, if only I had the figure, the age, the looks, the legs and the dancing ability that is probably a pre-requisite but otherwise they’d definitely give me a job!!  Okay so I thought in my head that I could probably do the can can but had never actually tried so I just tried and I actually did it – would post a video but “Nobody needs to see that”!!

The calf of my right leg couldn’t engage so I couldn’t stretch it – this I can now do and it feels so good to be able to stretch out my calf again!

The quad of my right leg was extremely weak and also didn’t engage so my hamstring would always take over.  This is much better although still weak and not as strong as my left.  Working on it with my personal trainer!!  Hope that it will get stronger but it may never but I’m still pretty happy!!!

Hip flexer (i think that’s what you call it) also wouldn’t work properly and that is heaps better.


Love these guys - loving the beach!

Right foot

Then:- Numbness some of the time, can't flex foot back and big toe spasms a lot

Now:- no numbness, can flex foot and no more big toe spasms..  OMG you have no idea how good it feels to be able to flex a foot again!!

Right knee
Then:- No control and it hyper extends and collapses also a lot of swelling often
Now:-  Have control of my knee again, no more hyper extending or collapsing.  It is still weak and still swells at times and I often have pain and have to ice and take neurofen.  It also crackles when I bend so I’m sure there is something wrong in there.  Planning to have a scan on it sometime soon to check it out.

Left arm / hand
Then: some numbness at times
Now: still some numbness at times



Standing in the heat and walking
around school #noproblem!

Back
Then: Tingling across back at times
Now: Occasional tingling but nowhere near as often

Aids - Walking Stick/Cane
Then: Use often to help with right leg and balance
Now: My cane is gathering dust with the umbrellas at the front door!!!

Aids – Wheelchair
Then:  Use on family trips to zoo's, theme parks etc
Now:  I used a wheelchair for first month home and haven’t touched one since!

Walking distance
Then: 200m, achievable but pretty difficult
Now:  Well I walked 5km on my 1st HSCT birthday!  Haven’t done that again but have walked 3.5km often!!

Stairs
Then: Extremely difficult to walk up and down stairs due to right leg weakness and right knee collapsing and balance
Now: I can run up the stairs if I so choose!!
And I've got to say I'm sure the kids love that I can do stairs easily enough again..  Our main living and kitchen areas are upstairs so I would constantly be saying Isabelle/Sebastien, can you go downstairs and get me....  can you go upstairs and get me...  can you carry this upstairs/downstairs for me! 

I’m sitting here now with a pretty happy smile on my face writing this as these are just awesome improvements!  I know some people hate the word “miracle” being used in association with things like this but I can tell you I feel like a miracle and thank god for my miracle maker Dr Fedorenko.  I follow lots of others journeys and every time someone posts a photo of Dr Fedorenko or Anastasia it just makes me smile and remember!




Stepped into the rocking row boat!

Every day now I feel so grateful for what I can do and it’s just such simple things.  Going to the market, walking into school, feeling awake at the end of the day, going to a meeting at night at school because I can and I’m not worried about feeling awkward, explaining to people why I have a cane with me and again awake enough to do it.  My husband works away sometimes and I now feel capable on my own to manage, I’m not stressed and stretched to my limit, I’m sure he feels okay about going now and not worried about if I’m okay.
Thanks for reading (if you made it to the end) remember I did warn at the very beginning that I’m a babbler and not a writer.  Maybe I could be a writer or maybe that’s just in my head???  Mmmm, I still think maybe I wrote better in Moscow and it could possibly have been the concoction of drugs running through my body and the massive emotional roller coaster I was on at the time!! 

If you are interested in reading more (and I haven't bored you to tears), the previous post to this one I never shared on facebook like I normally do as I published it on the blog much later than I wrote it and it would have been weird.. 

Loving Living Life again!
Nat xx

Whilst looking for some photo's to add I'm reminded of things I can do...  Walking up and down the stairs at the cricket about 5 times to bring everyone food (I was happy to do it!).  Going to the beach and spending over an hour at a time in the surf and not struggling and not struggling to walk on the sand - oh that's good..  Stepping down into a row boat! Of course the SUPing - see facebook video if you missed my awesomeness..  Walking around Melbourne - all day 15,000 steps!!!!!!


They were some steep steps at the cricket!








Looking back and seeing things again!

29^th October 2015

Day+ 1 year and ½ a month!

(I wrote this back in October and didn't get around to posting but I still wanted it included - hence the funny date!)

On this date one year ago we began the long journey home and I still remember it so well.

I was so excited to be coming home to Belle and Seb, it had been so hard to be away from them for 5 long weeks.  Even though being in Moscow and going through treatment was an amazing and life changing experience, it was excruciating being away from the kids.

I was so excited, so excited...  I kept counting down the hours... every time I finished food, finished a movie, finished a little sleep, went to the toilet, changed planes I would look at my watch and calculate how long to go.  And then we finally touched down in Brisbane and I had tears of excitement until that was taken away.  The reserved wheelchairs had been snapped up by other passengers so myself and another lady had to wait what seemed like forever for them to bring a couple.  I remember Paul kept looking at me to check if I was okay, I was not okay but as always my pretend face kicked in and determination not to fall kept me going and then we were on our way.

But then it took what seemed like forever again to get out bags and through customs, longest wait we’d had at any airport to Moscow and back.  Then finally through and their faces waiting with mum & dad, I was so happy to be home.

Then there was the flipside of being excited to see the kids, I was terrified of leaving the hospital.  I’d gotten through treatment with not to many hiccups and had been so very happy with the care by Dr Fedorenko, Anastasia, the nurses and all the other staff.  I really didn’t want to leave my safe bubble.  I really didn’t want to go out and deal with the germs of the world that for sure!!

Roll on 12 months now and here I am, here I stand, here I walk so well and feel so much better than I have for years.  The world is brighter, there is light in my eyes again (so Paul tells me).  Life is amazing!!

Here in Brisbane we have Jacaranda trees and they only bloom once a year.  They are these beautiful purple flowers and they really don’t stay on the tree very long and make a mess of the yard and roads but they are so beautiful that you can forgive the mess they eventually make.  Anyway point of my story is they are flowering now so they will remind me each year of my “new life”.  Not quite the purple iris that is the symbol on our pin but beautiful all the same.  I’ve also found and I may have said this before that I feel like I’m seeing things for the first time.  We’ve lived here for 4 years now and I’ve noticed the Jacaranda in our next door neighbours yard but I’ve never appreciated its beauty or how many there are around the city – I’m just loving looking everywhere again!

"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!!