Happy anniversary

Today is the 8th anniversary of me having MS. In another 8 years my first lesion will be old enough for me to kick it out of home ( if only ).  Mind you it will also be old enough by then to get its drivers license and can drive it self off into the big wide world.

Short of some awesome medical advances in that time it will have to remain where it is continuing to teach me new stuff.

So, in talk show style.  Here is a list of the top 8 things MS has taught me in the last 8 years.

  1. What is MS? –  MS stands for Multiple Sclerosis and it basically means that my immune system is trying to eat bits of my brain and Central nervous system.
  2. You don’t know how strong you aren’t till you need to be – somedays I am in a bit of pain some days a lot.  But I still have to live, love, laugh and learn regardless.
  3. The make the names of the drugs hard to say and even harder to spell  –  A lot of people with MS develop difficulty with their speech so can you imagine trying to say the name of a pill that sounds a  lot like Gonorrhea.  Enough said.
  4. Peoples eyes are the hard to look at–  this might sound like a weird thing to learn but it is true. I’d rather see sympathy in someones eyes than empathy.  I had a conversation at a bbq the other night and was discussing this with someone. “Surely empathy is better to see than sympathy” was the observation.  “No! If they have empathy then they KNOW what I am going through and I wouldn’t wish this one anyone.  Sympathy means they care.”  The look in my wife’s eyes when she checks my face to make sure I haven’t developed a palsy again is something I am always aware of too.
  5. The fatigue is awful –  The best way to describe MS fatigue is “ when you are tired your eyelids want to close,  with MS fatigue your eyebrows want to close”
  6. It is different for everyone.  MS is often referred to as the snowflake disease. While there are some common symptoms it can and will strike everyone differently.  It will wander along at its own pace, in its own little world and do whatever it feels like.  Not unlike a toddler in a supermarket really.
  7. Attitude is everything – I wanted to write something cool and inspirational here to finish with but the reality is it is up to me how I chose to live with MS.  My attitude is something that I can control.

So that is my list of the top 8 things having MS has a taught me in 8 years. But but but there is only 7 I hear the more detail focused people say.  

#8 is by far and away the most important.

  1. People make the difference – If it wasn’t for the love and friendship of those around me I wouldn’t have achieved diddly squat over the last 8 years.  It was the love of those around me that helped me get through the early years when I was really struggling.

Thank you to everyone who supports, inspires and encourages me. You help me to live better with MS.

Dream Big and Live Bigger.  ( I might have to copyright that I think ).


I’ve got big news

I’ve got news.  Big news.

I ate an apple this morning.

All of it. Well, except for the core and those weird tufty bits at the bottom because they taste like firewood.

While this is not exactly as earth shattering news as for arguments sake, the release of a sex tape by a media greedy socialite, it is huge in my world.

It means for the first time in a year I can continue my cunning plan of growing an apple orchard on the roadside between home and work.

Three years ago I started having an apple every morning on my drive to work and then biff the core out the window.  I figured this is better for the environment than a beer can or junk food wrapper so decided I was onto a good thing.  Besides, over the years I will be able to watch my orchard grow.

This time last year my cunning plan was derailed when I started on a Disease Modifying Drug ( DMD ) for my MS.  My body didn’t like it very much.  There is no other way to say it – I felt toxic.  My bloods tests proved this and with some of my liver functions being three times what they should be it was decided to move me to a new DMD.  Amongst other things I couldn’t finish an apple, went completely off peanuts, and the very thought of a beer made me feel like vomiting.   On top of all that I was about as social as a P addict.

But 8 weeks into the new drug my body likes this one.  Oh sure, it has some side effects ( what drug doesn’t ), like the menopausal hot flushes I occasionally get.  Ok, they can be quite intense – just look at the picture of my arm below, but at least I haven’t had any of the “gastro” side effects.  I was advised to keep my loo paper in the freezer! 13152610_1353580558001854_1780700495_n

Rereading that, this new DMD could actually be a concentrated Beef Vindaloo.

With the new drug, plus side effect management, our poor fruit bowl is a bit overloaded and there is no real way to say they are working.  Apart from the more obvious “I’ve had no relapses”, if that is the only measure I’ll take it. WP_20160527_001

Not only can I now ‘live’ the saying “an apple a day keeps the Dr. Away”.  I can also finish a beer.  There is nothing like sitting down to a cold beer after mowing the lawns but for the last year I was struggling to mow our lawns let alone sit down and have a well earned beer afterwards.

The other weekend I not only mowed the lawns but I trimmed all our hedges ( there are a LOT ), did some weeding and spread a few bails of pea straw.  Then I sat down and enjoyed two beers.  Yes TWO – please don’t tell my DR, though.  He might growl.

I started these posts a year ago this week, and like the roadway between home and work, it has started to grow.  Thank you for reading, liking and sharing about How I Live with MS.  I appreciate it more than you know.

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