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 ).

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Day off Day

Have you ever wanted a day off?

I have.

I’d really love a day off. One whole day.

But not from work. I actually have a great job and work with some fantastic people.

Nor do I want a day off from being a husband. My wife is incredible.

I don’t want a day off from being a dad. Oh hell no. My son makes me laugh every day.

And I certainly don’t want a day off from being alive. I even love my drive to work, especially when I turn the radio off.

No, what I’d love a day off from is being sick.

A day off from waking up and checking to make sure everything still works. As time progresses this is something I have started to do more and more. Wiggling my toes, touching my thumb and fingertips and smiling in the mirror have become a part of my daily routine.

A day without seeing what I like to call “the look”. I should probably explain “the look” here. It is what I frequently see when people look at me – “I’m just checking to make sure you are ok” also known as “I’m checking to make sure everything is working”. I know it is a look of love and compassion, but there are days I just wish I didn’t have to see my MS mirrored in the eyes of those around me.

A day off from being so tired it isn’t funny. In other words, a day on. Where I can help more around the house, kick a ball around for longer with our son and enjoy a beer on a Friday night with friends more than once in a blue moon.

A day without wondering when or where the next relapse will come from and what it might affect.

This morning I woke up (good start) and after doing my normal self-checks (passed them all) I had every intention of calling in sick to work and having what our son referrers to as a “day off day”. He’s an odd child and to him “day off days” are all about family, Lego, playing and Lego.

Maybe not such an odd child as he has a great point. A “day off day” is a day to enjoy what you have got and to enjoy those around you. So what I ended up doing was deciding today needed to be a “day off day”. So I got up, did some exercise and headed to work. The sky was beautiful, the drive was relaxing, and when I got to work I found out that #BonJovi have just released a new song. And then I wrote this.

So yes, I’d love a day off being sick. But I can’t. I have MS and while it won’t kill me, short of a medical miracle I will die with it. Someday. But not today. It’s a “day off day”.

August 2015