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

Living with Fatigue

One of my work mates has recently had brain surgery to remove a tumour and has been struggling with coming back to work.

In January 2010 I woke up one sunny, summer morning in Hamilton.  My one job for the day was for my wife and I to photograph my Sisters wedding.  Suddenly having double vision and a munted equilibrium made a difficult job just all the more harder.  I swore I would never drink Cheap Beer again.  A few weeks later I was officially diagnosed with MS.

4 years later and with our son a matter of weeks away from starting school I am fortunate enough to be still working but every day is hardest part of the battle.

Below are some of the things I have learnt about managing the tiredness. It’s amazing what you know when it comes time to write it down. It’s not definitive list by any means but those things help me.

EAT
The human metabolism requires regular feeding. A healthy breakfast is critical. It will help to provide you with energy throughout the whole day. I also find that having healthy snacks during the day helps. When I’m at work I also use the times when I am eating these to have a “micro break” to help me “catch my breath” and recharge a bit.

As much as it sucks – avoid the quick sugary fix to give yourself an energy boost. Its false energy and in the long term you feel worse.

DRINK
…plenty of fresh water as well. It helps to cleanse the body.

Avoid those sugary energy drinks, as tempting as they are all they give you is a quick 5 minute boost and will leave your drained for a long time afterwards.

SLEEP
Another no brainer (so to speak) but sleeping is critical for brain health. There are a number of solutions to getting to sleep. Breathing exercises help me sometimes. There are times when I’m on strong doses of steroids and on those occasions my Doctor has prescribed sleeping pills. I hate using them but I know I have to. If you having issues with sleep – talk to your doctor

The other horrible E Word
No, not “drugs” – EXERCISE. I’m not talking about running till you puke or ending up built like a professional wrestler. Soft simple and manageable exercise. It might only be a 5 minute walk on the first day but slow and gradual increases coupled with rests is hugely beneficial. Something as simple as ten minutes gardening can make a huge difference.

KNOW YOUR LIMITS
This is probably the hardest thing to do, I know I certainly struggle with it. Your limits may change from day to day but you do need to know what your limits are at that day.

and then… STICK WITHIN THEM
That’s the hard part – I suck at this. I am always trying to push myself and do what I used to. MS is incredibly frustrating like that and I get frustrated I don’t have the energy I used too but I am always trying to stick within my body’s limits.

BREAK IT DOWN
There will be things that you can and things that you cannot do. The dishes might need doing, the lawn mowing, the washing needs folding and the cat needs patting. Break it down into individual tasks and do them when you can. But don’t forget to pat the cat or they will poo in your slippers.

RECOGNISE YOUR SIGNS
You will learn that you have certain signs of having overdone it – or you are approaching your limit. I get vague, dizzy and my legs feel like they are wrapped in concrete. You will be completely different.

TURN YOUR BRAIN OFF
I find that there are times during the day when I need to turn my brain off and just sit still for a few minutes. I am lucky I can do that at home of an evening, sitting on the deck listening to the birds.

THE WITCHING HOUR
My witching hour is from 3 till around 5:30. I feel like complete crap then so I avoid scheduling anything to mentally taxing during that period. Learn when you feel most tired and work with it. I also try to have a lie down for ten minutes when I get home from work.

CHOCOLATE
If you have set yourself a goal and achieved it, be proud of it and it is ok to reward yourself.  No-one else will ever truly know how much of a struggle it may have been for you.  It could be something as simple as a piece of chocolate.

COTTON WOOL
All this aside don’t make the mistake I have over the last four years of wrapping myself in Cotton wool.  I have missed so much of my son’s first four years by not doing anything instead of doing what I can.
DON’T BEAT YOURSELF UP
There are days that I get really frustrated that I can’t do everything I want to. But you know what, my health is more important. I often ask myself when struggling with something “is it really important?”

TALK
It is critical that you let those close to you know what is going .  They can help you in a way that no-one else can.

Above all else remember IT IS NOT YOUR FAULT you got sick.

Written June 2014