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!