A special day

WP_20160202_003Today is a special day in our house.

It is Saturday.  A day to relax, to sleep in and for me to make pancakes for breakfast. I’m planning on mowing the lawns and sitting down afterwards in our newly created seating area to enjoy a cold beer.  Who knows, we might even go over to the in-laws and help build a mai mai.

A pretty normal Saturday really.  “There is nothing special in all that.”  I hear you say.

To some people it would be an incredible day.  The horsemen of the Apocalypse, War, Pestilence, Famine, Death and George see to that.  For the record, George is the newest horseman and his job is to tie extension cords in knots when you aren’t looking.  He also has a side hobby of wrapping garden hoses around lawn mowers.  Even the other Four don’t like him.

To the 2.5 million people around our planet that, like me, have MS it could also be seen as a great day.

Fatigue, pain, stigma, destruction and depression are the five horsemen of MS.  I know that while I mow my lawns I will be fatigued, it will hurt, I will worry that my wife is worrying about me overdoing it, the destruction to some of my nerves will still be there and I will wish I didn’t have MS.

So what makes today so special then?  It is my 6th anniversary of having MS.  That’s right. 6 years ago today I woke up with double vision and a very munted sense of balance.  Not a great way to start a day that included photographing a wedding.  But, like every day since, I got through the day with the amazing support of family and friends.

After 6 years of living with MS even I am surprised at how well I deal with it.

Looking back I have achieved so many things I don’t believe I would have, had it not been for the MS.

For a start you would not be reading this and my posts wouldn’t have been read all around the world.  I don’t think I would have ever written and chosen to self-publish ‘Blue Ted’s Day at Home’.

We would not be in the home we have with the wonderful lifestyle we enjoy.

And I’m pretty confident that I would not have recently played lawn bowls for my community.  That’s right! I have handed in my ‘young person card’ and have taken up lawn bowls.

I don’t think I would be doing the job I do.  Working with a fantastic bunch of people makes it so much easier to keep going, even on the days when I am a ‘bit grumpy’. They are all so incredibly supportive.  Considering that the average time for someone who is working after diagnosis is 4 years, I’m punching above my weight.

The last 6 years have taught me to appreciate the good days, accept the bad ones and most importantly to tell those I love how much they mean to me every single day.

Most importantly it has taught me that yes, I have MS but it does NOT have me.

If I can live with MS I’m sure I can work out how to deal with George……

 

I Hate Pills

I hate pills!

One of my earliest memories is the taste of a quarter aspirin (or dispirin or possibly a dishwasher tablet) in a teaspoon of raspberry jam.  Nothing could prepare my young tastebuds for the acidic bite when the pill would inevitably erupt from the jam and vindictively wedge itself behind a tooth. “Just have the pill” my Mum would plead “it will make you better”.  She never did answer my wails of “How?”

So, being a rather determined child I decided to overcome my hatred by learning to swallow pills whole by practicing with raisins.  After a bit of trial and error I eventually conquered my inability to swallow a pill.

Did it make me like taking pills any more?  Nope, not a chance!

I still hated pills.

This led to a lifetime of avoiding doctors, chemists, drug dealers and health food stores. So you can probably imagine my reaction when I was diagnosed with MS.  “I’m not taking any pills” I would mumble to anyone that would listen, including the cat.

5 years later and the average month has me taking over 200 pills and not a teaspoon of jam in sight.  When I did the maths it was actually quite a scary amount so let me break it down for you

  • Twice a month I take Vitamin D because my Dr said.
  • Every morning I have three Fish oil tablets because it is supposed to help with brain and heart health.
  • Every night I have two Panadol just before bed to help with the leg tremors I get and so I can get to sleep.
  • Every night I have a little blue pill.  NOT THAT ONE!  There is a less than endearing side effect of my MS is called Nocturia.  In other words I go to the toilet before bed, get up and go again, go to bed and then get up and go again.  My record is 8 times in 20 minutes.  So my Neurologist suggested this little blue pill.  It also helps me get to sleep.
  • And last but not least is the new addition to the mix and this little pill has been the hardest to adapt to.

Recently I started on one of the new disease modifying treatments that Pharmac has kindly started to fund. And yes it’s a pill.  This has been the hardest one to get used to.  It might only be a little pill but it’s had a major impact on my life since I started taking it.

The first impact was on my pride.  I was fiercely proud of being “drug free”, but if this drug gives me a 50% better chance of being able to walk at my sons 21st, or being in a chair the whole time, then pride be damned, I will take the pill every day.

The second impact has been on my body.   Any treatment that starts with a compulsory 8 hour day at the hospital for monitoring your heart has got to be a bit stronger than quarter of an aspirin.   I’ve had a range of side effects come and go since I started it. These include, but are not limited to, blocked sinuses, flu like symptoms, exhaustion and a regularly upset stomach.

The third impact has been on my time.  Apart from the inevitable regular blood tests, I also now have to have regular eye tests.  And then there is the time I’ve lost due to the constant feeling of illness.

I know it’s not a cure for MS but it might slow the progression down and if that makes me “better for longer” then my training with the raisins is time well spent.

So everyday I will fill my sons Smurfs cup up with water and take my medicine.  I still hate pills but know I need them.

Written June 2015