Multiple Sclerosis - My Diagnosis

In the middle of August 2016, as Usain Bolt was winning his second gold medal at the Rio Olympics, I sat in the Radiology waiting room, awaiting the MRI that would determine the rest of my life.
Since the end of 2013, I had experienced a range of problems that were seemingly unrelated, but had left me feeling less than 100%.
I really want to write about how my MS presented because I hope it might help someone else one day.  Before all this happened, I thought that people knew they had MS because they kept dropping things, or they woke up one day and couldn't walk.  However MS is often referred to as the 'Snowflake' Disease, meaning that every single person with MS presents in a different way and has a whole set of symptoms that are uniquely their own.
I think I could have been diagnosed earlier if I had listened to my inner voice that said that things were probably not quite right.  But unfortunately most of my symptoms were not visible and not measurable and so I didn't even bother going to my GP because I didn't want to waste her time.  The patches of skin that were extremely sore to touch I now know is called Allodynia and is a symptom of MS.  But at the time I felt like a fool going to my GP to say that there were parts of my body that hurt to touch for no particular reason.....and that it wasn't really bothering me.  Similarly, I had my husband (a doctor) check inside my right ear twice because I was convinced I had an ear infection.  When he said it all looked perfectly normal, I didn't see the point of going to the GP.
Along with the Allodynia and my sore ear, my symptoms over a three year period included:

• A numb left thigh
• Back Pain (investigations showed no problems that would cause this - subsequently disappeared)
• Bladder Problems (having to pee every 10 seconds)
• Fatigue
• Cognitive Fog (problems concentrating)
• Digestive issues that drove me to be tested for Coeliac Disease. These issues went on for months and then disappeared almost overnight.
• Tingling, heaviness, pins and needles, and numbness in my arms.

In early 2016, I happened across an article on MS and when I read the symptoms I had a lightbulb moment in which I realised that I had experienced almost all of them.  I nervously floated the idea of MS to my husband, himself a doctor.  "What if everything that has been going on is actually part of something bigger.....what if I have MS?"  I asked him.  He looked at me dubiously and I didn't really bring it up again.

A couple of months later I couldn't really ignore that I was getting regular pins and needles in my arms - particularly the left, and numbness in my finger tips.  Then I had a horrific experience where the right hand side of my face went temporarily numb.  I made an appointment with my GP.  To be honest I was sort of embarrassed and I went in saying "I know this sounds crazy but...".  She listened to my story and immediately asked "What do you think it is?".  When I replied that I was worried that it was MS, she replied "I think it could be too".

That was the first time I really felt scared that my hunch might be right.  I saw her on a Tuesday and she requested that I have an MRI.  On Wednesday I felt great and thought that it was possible that I had imagined everything.  Then on Thursday things started to go downhill.  It started with Allodynia on my feet and lower left leg.  The outside of my left leg and arm went numb for a couple of days while my feet unfortunately started to alternately feel painful/or as if they were on fire.  I also started to experience vertigo, just to top it off.

The next week I had my MRI which showed that I had "...at least 10 hyperintense foci".  It was a bittersweet moment because it simultaneously provided me with my answer and also sealed my fate.

  

Super 10's

Last year, we spent many of our Saturday afternoons at 'Super 10's'.  Super 10's is a nationwide tennis competition for boys and girls turning 10.  At the end of the year, the top four boys and girls from each state and territory are invited to attend the Super 10's National Finals which take place in Melbourne during the last week of the Australian Open.  My oldest son, 'The Snerd' was extremely fortunate in being asked to represent Tasmania for a second time in 2016.

Some very special guests at the National Finals Opening Ceremony!

For kids like my son, who live in a small state, the value of attending an event like this cannot really be measured.  First and foremost, there is the absolute delight of playing at the National Tennis Centre.  The National Tennis Centre is Australia's best, purpose-built, elite tennis training facility.  It offers 5 outdoor plexicushion courts, 8 italian clay courts and 8 indoor plexicushion courts which are the envy of all players whose tennis at home is regularly affected by the elements.

Playing doubles on the clay courts.

Secondly, the Finals are an incredible experience because the kids are afforded the opportunity to play a number of new opponents.  In a small state like Tasmania, it is unfortunate but true that our kids end up playing the same half a dozen players over and over again.  Usually the outcome of the match is known before the kids even step onto the court and the likelihood of a close match is rare.  Having the opportunity to play up to four matches a day against unknown opponents is incredibly valuable.  

Being in Melbourne while the Australian Open is on is another huge draw card for this event.  The atmosphere around Melbourne Park is amazing, and just knowing that some of the worlds greatest players are nearby, walking past you, or having lunch at the table next to yours in the cafeteria is inspirational.  

Finally, the opportunity to make friends from different states is immeasurable.  As The Snerd begins to travel interstate to tournaments, or is chosen to represent his state at The Bruce Cup (for example), he loves knowing he will cross paths with friends he met at Super 10's.  Given the solo nature of tennis, the importance of friendships made off the court cannot be ignored.  

This is The Snerd's last Super 10's because sadly he will be too old next year, but he will carry fabulous memories of these trips with him forever.  There has been some speculation that Super 10's may be drawing to a close…..but I sincerely hope the value of Super 10's (especially for our rural and remote players) is recognised and the Program continues into the future.

Packing for Dummies

What a conundrum!!  Your child has made the State team and has to go to a competition interstate for 5 days.  Only problem is……said child can't make it from the kitchen to the front door without losing something *sigh*!!!!!!     What to do??  Well if you are anything like me, you arm yourself with snap lock bags in every size you can get and a permanent marker and get to work…...  

Firstly I had to clean out the bag.  Oh the horror.  How many shockies and tennis balls does one boy need?  On the bright side, I did find $3:50 in change rattling around in the bottom so that was a bonus.

Now you are probably wondering why everything is in snap lock bags?  Well there are two reasons.  Firstly, a leaky drink bottle can be a bit of a disaster.  Secondly, our household will never forget the rotten banana soup incident of 2014…………and 2015……….  The weird thing is this child does not like or ever eat bananas so I have no idea why they were in his bag in the first place.  I did lose my sh*t after the 2015 incident and refused to clean the bag at all.  Instead I made him throw it in the bin and go without until he had earned the money to buy a new one.

We have now ticked everything off the tennis bag checklist.  We sat together and packed it so he saw everything go in….and now all I can do is sit back and keep my fingers crossed.

We leave for Melbourne bright and early tomorrow.

When life gives you lemons...

Late last year I spoke to the boys' tennis coach about going interstate for a tournament.  He suggested we go to Shepparton but I had a couple of problems with this.  Firstly, it would be January.  Secondly, it would NOT be near the beach.  I decided to try to find a tournament we could enter that would also be a great place for a summer holiday.  This proved to be a wise decision as a combination of windy weather and a change in court surfaces (The Snerd is a Hard Court boy….the tournament was on en tout cas ) meant that The Snerd bombed out early in 12/U singles.  Curiously the 10/U singles was a round robin with all matches played on one day so Captain Crazy had days and days of holiday.  So in the end, although we didn't have a fantastic tournament, we did have a really great holiday and a terrific look around the Mornington Peninsula.

We stayed at Big4 Mornington Peninsula Holiday Park.  Big4's are a great budget friendly choice when travelling as a family of 5, so we have stayed in a few around Australia.  I always feel a little concerned about staying in Big4's when on 'business' rather than 'leisure' as it is possible to have kids running around until quite late at night which is problematic when you try to get your 8 year old in bed at 7:30pm.  However, in this case we had no issue with noise at all and the cabin was big enough for us to fit comfortably without feeling like sardines and falling over each other.  Arguably the best thing about this Big4 was the coffee van who came each morning for a couple of hours saving me from the horror of Instant Moccona.

On the days we weren't at the courts, we explored all the beach towns and I got major Beach Hut envy:

On one of my favourite days we went road tripping to Enchanted Adventure Garden which we all loved.  Although we didn't go tree surfing due to The Snerds fear of heights, the kids had great fun on the tube slide and all the garden puzzles while I was blown away by the gardens.

Maybe I have lived a very sheltered life but I have never seen hedges like this before.  I thought they were amazing.

We stopped in at Heronswood for lunch and more gardens (much to the delight of the children).  However they were pacified by the wonderful food and the homemade cordials.

Homemade Ginger Beer at Heronswood

Finally, as someone who does not live near the coast, I have to mention how cool the Sand Sculpting was at the Frankston Waterfront.  Even thought the theme was 'A Day at the Zoo', I have long been a closet Steam Punk fan so I really enjoyed this one:

So even though this was supposed to be a tennis trip I think we will all remember it more as a family holiday.  We may not have gotten the tournament results we wanted but instead, we made lots of great memories.

Shack Life

Between the end of school and New Year, we managed to get away to the beach for three weeks (the two dogs included).

This is the second year we have rented the same shack.  When some people say shack they mean 'palatial abode by the sea', but when I say shack I mean shack….complete with outside toilet.  However we love our rented shack in its sleepy seaside town.  The kids are free to come and go as they like, and the pace of life is so relaxed that it is safe for them to ride their bikes which affords them a freedom they don't have in the city.  Also the lack of fences meant the dogs had more freedom than they ever imagined!!!

In between walks on the beach, beach cricket, backyard cricket, catching up with friends and coffee, we finally had time to relax and unwind from our incredibly busy year.  It was a wonderful way to end 2015.