Tuesday, 22 October 2019

Three years

Three whole years.

It's unbelievable.

I remember every detail of that moment.  The weather, the room, what I was wearing, who was there.

My heart broke.

And it hasn't healed.

You are missed more than anything, and remembered every second of every day.

I talk a lot about you.  Especially to the boys.  To keep your stories and memories alive.  They always say to me "don't cry, Mom."  But I do, and tell them its okay to cry.  And sometimes they do too.

I know you are with us.  I can feel it.  I know you help me get better when I am really sick.  I know you are out there in the universe.  When a hungry hummingbird comes to our feeder, I know.  When a flash of memory hits me out of nowhere, I know.

I wish I could go back 20 years and tell you how much you taught me and how much I always needed you.

I work hard to continue your legacy.  Your values and goals.  And I'm proud of that.

So today, I'll take a quiet walk through your favourite woods and I'll raise a glass to toast you.  The greatest, strongest woman I have ever known.

And I'll find another story of you to tell the boys.  Your grandsons.  They miss you so.

O will be 9 tomorrow.  The day after you passed is the day he begins a new year.  How lucky he is.  The cycle of life continues.  And both boys are here, learning from you still, and showing the world who you were.

We miss you Mom.  So much.

Friday, 11 October 2019

Unplanned thoughts

Last weekend was the MS Connect conference, at which I was able to present my story of living well with MS.

I had written in my calendar to recap that conference through a blog post this week.

Big change of plans.

I'm not sure what has happened, but that is the nature of this disease.  We never know what, or when anything will happen.  That's the hardest part.

I have been mostly sleeping for 2 days now.  Headaches so bad nothing is even touching the pain. And now a consistent sharp banding pain around my chest, known as the "MS Hug."  Imagine the feeling of getting the wind knocked out of you, add in consistent intolerable pain, and have it last for days - that's my variety of the MS hug.

So I'm sorry this isn't a conference recap.  Because there was some incredible information and advances I'd love to share.  But I need to take of me right now.

I'm not writing this so you'll feel sorry for me.  I'm writing it because this is my personal therapy.  And because living with it can be so hard.  I need to keep creating MS awareness and knowledge - of the struggles, the symptoms, the experience. The message still hasn't been understood by so many.

I feel absolutely awful.  The worst in a long time.  So bad I almost cracked open my Mom's stage 4 cancer morphine from 3 years ago.

If it continues tomorrow I'll assess my hospital options.

Healthcare needs to be a WAY bigger concern in our society.

Thanks for reading and listening.  It does help. 

And as I always promised myself.  And a big part of how I do live well with MS (most of the time) - a joke to end the post...