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!