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!!