Aug 4, 2014

"Time is really the only capital that any human being has, and the only thing he can't afford to lose" ~ Thomas Edison

It's really quite amazing how a month which in the moment seems to be such a short yet long amount of time can ever so quickly turn into a year in the blink of an eye.  We often take time for granted in busy lives trying to cram it all in, often missing precious simple moments without even thinking twice.  I've learned as yet another 'anniversary' hits not to take time or many other things for granted.  Or perhaps I'll say I'm 'learning'.

One year ago tomorrow my dizziness and vertigo along with tremors and had gotten so bad, medications did not help, nor did Natural treatments that my family Doctor put me off work for "a month".  A simple month to figure things out and give it time to go away.  A month to try and get me into a neurologist and an ENT to see what was going on.  It's really quite hard to believe that this one little month of being off work has turned into a year.  How is it possible that a healthy 36 year old wife & mother of two could hit a point of being unable to work?  I really didn't put much thought into it at the time.  As I really thought I'd be back to work in September at the latest, no biggie.  But as each month passed and more issues hit my breaking body it became clear that this month was going to be the longest month ever.  Already 12 times longer than the average month, I often find myself wondering when this long, long month will be over.  I love my job, I love my children but I have always loved having a career.  I miss it terribly.

Since being on the full dose of the Parkinson medication Levodopa I have seen improvements as I've spoken of before.  Mostly in the area of stiffness and not being so slow to get going and some in the fine motor skills department.  That has been a pleasant thing given the challenges I've faced and I'm am grateful for those little positive changes.  I find joy in those little abilities even if they are only for short periods of time.  And then, I'll hit a moment where I convince myself I'm getting better and I can do something I once could with ease.  I call it body amnesia.  I tell myself the meds have been working and I haven't tried something in a while so I can do this if I time it right.  And then in that moment of attempting it I often get a huge reality slap in the face... This past week I got one of those dreaded reality checks.  My daughter Samantha turned 6, she wanted a bedroom makeover for her birthday.  I love to decorate and come up with a vision for a room and bring it all together.  Love to paint and match colours etc... So I thought I have two months I can do this.  I picked at little projects for weeks upon end, giving my body time to do a task and then rest from it.  Mostly giving myself time to hit a wall on a bad day where I had to stop and try again another time without the panic of time going by too quickly and not having it done.  I got this one!  I found joy in a few days where I was able to hold a paint roller to paint a dresser.  This is exciting, I can do this!  A few days I struggled and brushed it off that I didn't time it with my meds right, it was ok.  I'd try again tomorrow.  Then came the day before her birthday and paint day.  I prepped the night before so I had little do to day of other than paint.  Turned my husband's offer to paint for me down.  I had a plan.  I'll wake up, take my meds, sit and relax with a coffee for a while for it to kick in and then I'll get at it.  The time had come and off I went.  This is going to be awesome, I'm going to accomplish something big given the year I've had!  Well I won't bore you with the details of that day, lets just say I could not have been more wrong.  My bubble didn't just burst it exploded in my face.  I could not balance on a ladder, I could not hold the brush steadily enough to cut in, I could not do it.  But by the time I realized I could not do it I was so pissed off I was refusing to admit defeat and I pushed on.  Well it ended up in a mess of walls that looked horrific, a split gallon of paint and my husband hugging me while I cried.  Him offering to do some sanding, fix the mess and finish it for me and while he did so I simply hugged him, cried and said "it's not the point, I don't want you to do this, I want to be able to do this, it shouldn't be this damn hard".  But it was.  Pretty near impossible in fact.  It's the first time in a while that I've tried to push myself to do something and been very quickly reminded that meds or not I am not capable of doing simple things I once took for granted anymore, and I don't know if I ever will be.  In the end, my hubby saved the day, he sanded off some really big messes in the paint and finished it off... I then did the fun part of putting everything in place the following day and the surprise makeover in the end was a huge success with a very happy girl.

I paid for that stubborn attempt at doing something a normal body could do for days upon days.  It's like my body wants the pain and agony I've wreaked on it to linger long enough that I'll clue in to it's cues and say 'ok body I get it, I can't do stuff like that'.  My body wanted the pain, shaking and agony to last long enough so I would realize that I cannot get time back once it's gone by.  That if I want to choose to do things outside of my current ability I will lose that time while attempting to 'recover' and not get it back when I'm suffering.  I'd like to say I get it, that I won't do it again.  And I have come to terms with the fact I only have so much steam in me.  Which is why my housework has gone to crap because I need to exercise to keep my body strong and my children need their Momma for memory making and I can't pull off all three.  But there are still times where supermom persona comes out and I think I can do more, just one time.  I suspect that this will not be the last time for this type of scenario as time has a funny way of making us 'forgetful'.  Enough of it passes by that you think well I was bad then but I'm better now I could likely do more.  I guess we call these lessons learned over and over.

Despite the agony, despite the pain after, despite the frustration, despite the meltdown and crying it was still very joyful to see my girl so overwhelmed and happy with her new beautiful room (thanks to Aaron's help).


Time can make you miss a lot.  I miss the ability to do certain tasks with ease that I once took for granted.  There are people that were once active parts of my life that aren't so much anymore that I miss terribly, more than words could express.  I miss working, I loved my job and have always taken pride in the career I've built for myself over the years and I miss it terribly & the amazing people I worked with.  But one thing I refuse to let time have me miss is memory making with my family.  My children deserve to have memories of good times with a fun Momma, not memories of a Mom laying around in bed useless.  Of course there are days I have like that but I try to keep them at a minimum.  I will continue to find joy in the simple things in life, like beautiful beaches in PEI where my kids laugh and play and have fun where their memories include me but I can also be lazy there (it's like an illusion memory for them lol).  Like the camping trip our family is about to go on this week in Nova Scotia with dear friends.  I will not let time take away all the joy.  I will continue to push myself to excercise and keep my body strong.  I will continue to memory make.  I will continue to 'try' to do things that used to be much easier even if it pains me.  I will continue to be the best Momma I can possibly be.  I will continue to try.  I will still have days like I did last week where I feel defeated and have a poor me moment, but I will get back up and I will not give up.  And I will find joy in the lessons I'm learning along the way, good bad and otherwise.

And on one last note... When I started writing this blog I didn't even share it.  I did it simply for my own therapeutic reasons to get things off my chest  One day I decided that maybe it night help someone else understand things better.  Or maybe it night help someone else struggling with a health problem.  Well last week I received an email from a woman named Lainie in Oklahoma.  She said she read my blog and that she as well is starting treatment now for Young Onset Parkinson's disease in order to diagnose.  She went through the Wilson's testing etc... all a similar story to mine.  She reached out to tell me that it really touched her and made her feel as though she's not 'alone' and kindly offered her prayers.  I have to say it was humbling getting her note and uplifting at the same time.  I'm happy if my writing can help someone else in any way shape or form.  But know this Lainie, I know the alone feeling.  As much as we may have love and support which I'm lucky to have by many, it's still a journey that you truly do take alone.  One that can make you feel sad, lonely and empty by times.  A journey that nobody can truly understand without going through it.  Whatever 'it' may be for that person.  So your note to me did the same as what reading the posts did for you.  It also made me feel like I'm not 'alone'.  So thank you for reaching out, we are not alone!  Let us find the comfort in each others struggles and find the joy along the journey!

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