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

 

How I lost my leg

The other day I lost my leg.  I didn’t really lose it, not like I lose my keys, my weekends, or you know, ummm words.

But for all intents and purposes I lost my left leg.  It was there, I could see it, I could touch it but it didn’t want to do what I was telling it.  There is a medical term (which I could never spell or say) for what happened but I like to call it Drop Foot.

My life was going great and I thought I had my MS under control BUT I can tell you the exact moment it happened.  I was lying on the side of the Waimakariri River, after teaching my 5 year old son and a Japanese exchange student how to skim stones.  Just a normal Saturday afternoon really.

Filled with pride, as I watched my son try and try again to skim the stones, standing up to carry the picnic basket back to the car was a very harsh reminder of how cruel MS can be.  My left foot just didn’t want to lift over the stones properly.  This was new and I didn’t like it very much.

Two days and quite a few “Oh I’ve just got a sore leg” comments, to those around me, later I decided it was time to go to the Dr.

His parting words that day will stick with me for the rest of my life “Sorry Glenn, but it’s just part of your disability”.  That and the fact that the words had me in tears for most of the drive home.

“I’m not disabled, I mean – I’m a red head but pretty sure that doesn’t count” and other such thoughts were crashing around in my brain.  But the main thought was “How am I going to kick a ball around the lawn with my son.”

You can imagine the relief when, two days later the Neurologist told me that after a burst of steroids he could see no reason why my leg wouldn’t return to pretty much normal.  Next time it may not, but this time, thankfully, it did.

If you’ve never been on a big dose of Steroids, be glad!  It is hard on you, and those around you.  Very hard!  For a few days I felt like a Neon light bulb, buzzing away all day and night.  Then the steroids started to wear off, and it felt like I had a football inside my guts being slowly pumped full of air.  Oh Dear Lord, that side of the steroids is the worst.  If my Dr ever suggests sleeping pills and something for my stomach again I am going to tell my pride to go play in the traffic – and take them.

That and the fact I would prefer to stay married!

For me this has been a very harsh lesson and this is what I have learned.

  • Yes I really do have a disabling disease.
  • Support can come from the most surprising sources
  • Automatic cars are good
  • The battle is fought both Physically and Mentally
  • And most of all there is one thought that held me together through all of this – “It’s what I must do to be able to kick a ball with my son”.

It took a week but I found my leg and my focus point if I ever need it again.

Written September 2014