Sleep

Remember that episode of Seinfeld with the "Jimmy legs?"

I feel like that - but in an all-over sense. 

Sleep has not been coming easy.  My hands are twitching, my nerves are jumping, my skin still has that crawling sensation.

MS and sleep problems seem to go hand in hand.  From neuronal damage, increasing MS symptoms, mood changes, heat intolerance.

And ironically, the debilitating MS fatigue is always present, yet so is the sleeplessness.  Lose-lose.

Hard to be fresh-faced and ready for a day with the ruffians.

I've been told it shouldn't take longer than 30 minutes to fall asleep.  MS or not, that has never happened.  Ever.  I am a terrible sleeper - everything needs to be just right; perfect. 

Apparently doing something active (I would usually go the passive TV route) is good, as it can help increase levels of exhaustion.  But wait...  There are levels of exhaustion?  It can get worse? 

Cause at this point I would hand over a crisp $100 bill to the sleep fairy if she came right now.

I hope blogging about sleep, or lack thereof, at 12:30 in the morning will do the trick.

And back to the Jimmy legs...

MS-iversary

One year passes very quickly.

It feels like the fastest year of my life, yet in the same breath, like I've aged 20 years.

One year ago, almost to the moment I am writing this, my world changed. 

The rest of my life changed.

I walked into that Neurologist's office, expecting my brain MRI to be normal; that my symptoms would continue to be undiagnosed.  Then that fateful moment happened.  Alone, I sat in the examining room, with the MRI images already up on the computer monitor.  I saw the images.  And I knew.  I knew without a doubt.

And here we are, a year later.  Some days I still can't fully explain how all this feels.  Whether I am still saddened by it, or have passed fully into acceptance.  Or maybe my real fight has yet to come.

It has been a battle like none I have experienced before.  Yet, it has also been an incredible journey of self discovery and increased self awareness.

So, today, I will enjoy the last few days of holidays with my family. 

I'm still fighting, MS...

"Mommy, what does MS feel like?"

Today I learned my 6 year old knows more than I thought.

That question came out of nowhere. 

It was followed by this heart-wrenching statement:

"I want your MS to go away.  I worry about you." 

Then the questions came - fast.  Can I make my MS go away?  Why do I have it?  Will he get it too?  Will the shots I do everyday cure my MS?

That's a lot for a 6 year old to ask, and a lot for a mother to answer.  And it's hard to sugar coat it.

We talked about how MS affects everyone in different ways, and we talked about how it has affected me so far.   He wanted to see pictures of what MS looks like on a brain, so we looked at some images together.

It was a sad conversation to have with such a small, innocent little guy.  His worry for me - for my health - breaks my heart. 

But I am amazed by his knowledge, interest and genuine concern.

Our chat finished with him telling me it was so important for us to do the MS Walk every year, as that will "help the doctors raise money and make Mommy healthy."

Those 5 minutes of my life - I will never, ever forget.

MRI update

My big spinal cord lesion, which is a transverse lesion, at C4, has increased in size a small amount.  This is since my last cervical spinal cord MRI last October.

The lesion is classified as "high intensity," in imaging terms.

As for what this means for me, right now - not much.  But I think it does prove, as expected, that most of my current disease activity is spinal cord related.

Treatment will continue as normal.

Tomorrow I meet with my Neuro-Ophthalmologist to check my right eye.  It's been over a year since the acute optic neuritis, and although most of my vision is back, it has never returned to normal.  Vision, some colour perception, and peripheral acuity are all still very much affected.

Upwards and onwards..... I guess.

Emotional ebb and flow

It's hard not to be melancholy right now.  Sad even. 

Despite expelling every ounce of energy into being positive about my MS, as we approach the anniversary of my diagnosis, it seems to be hitting me harder than I expected.

I thought I'd be feeling proud of myself - for the fundraising and awareness I have worked so hard on.  For my personal efforts to not let this disease consume me.

But right now - it feels very all-consuming.

Simply going through the motions becomes exhausting.

But, with any disease, the emotions vary so much - each day becomes the unexpected.  And the unexpected becomes the confusing. 

Today, I can't help but reflect on the past year.  It's been a whirl of activity and appointments and upsetting news.

Perhaps tomorrow will be different.   I'll blame the rain.

What a game this is.

When life's a beach...

You forget about all the bad things. 

The things you need to do; need to remember.

You forget about all the doctors appointments, the tests, the injections, the pills.  And what it all means.

You stop making lists and just let life soak right in.

For 5 (short) days, I forgot about my MS.  I didn't once think about what my future holds.  Whether 10 years from now I'll be able to make this same trip or not.  For 5 days I felt healthy, alive, and worry-free.  Probably the most I have been this past year.

I marvelled in watching my boys play in the water and sand.  I felt like I was watching them grow-up.  A lakeside rite of passage, if you will.

Air-dried hair and no make-up is fantastic (for a while).

A recharge was exactly what was needed. 

And what better place to do those awful injections...

Childhood

This is my happy place. 

I envision sitting out on the dock whenever I need to relax and take in a few breaths of calm.  Listening to the sound of the waves lapping against the shore.

It's where I spent every summer growing up.

And now, for the first time, I will bring my kids here.  It's an odd feeling being the adult now and not the child.  Not the teen escaping from her parents or day-dreaming about her grown-up life.  Now I'm the Mom, with much bigger fish to fry.

It's kind of emotional going back.

I hope (after 6 hours in the car - each way - with the boys) it remains in such high standing.

I'll be back in a week!