"Guilt to Motherhood is like Grapes to Wine" ~ Faye Weldon

I've often talked about my 'Mom guilt' in my posts.  Well I would be lying if I didn't say it wasn't pretty heavy this past week.  Last week after pretty near 2 days in bed and a couple of physio/acupuncture appointments my 6 year old cried before bed one night.  She again did the same thing today.  A child worrying about adult issues is wrong in so many ways.

Before I explain more, let me take a step back.  My grandmother sadly passed away in November last year.  She had been plagued with MS for years, was wheelchair bound and near the end was bed ridden.  My kids called her "GG" short for Great Grandmother.  She was an amazing woman and a huge part of our lives.  Her death was the first real death of someone close to her that Samantha had experienced other than when she was a baby and doesn't remember.  She was of course extremely upset when her GG died and we read a lot of books about it and talked about it a lot.  Now, a mother knows their child like none other.  Recently out of the blue Samantha has had brief fits of crying saying she misses GG.  I would console her and explain that we all miss her but that we need to be happy knowing that GG is out of her wheelchair and happy with God in heaven.  I've recently noticed however her moments of this seem to coincide with times Momma is having a bad day.

Last week when she started to cry about GG, it was day two of me being down and out.  Her Dad at urged me when I got home from my 2nd physio appointment to go outside to see her that she was worried about me.  So when I sat down with her I asked if perhaps she was upset over something else.  She admitted that she was scared and worried about me.  Insert sound of a shattering heart here.... :-(  She went on to explain to me that I was in bed a lot the last couple days and kept going to Doctors appointments and she was worried and scared because I wasn't ok.  So I swallowed the big lump in my throat forced the tears away and tried as best I could to explain to her why.  She knows Mom shakes, she mentions it quite often when she sees it despite my best attempt to clench muscles and keep it hidden from her.  So I simply explained to her that sometimes because of the thing Mom has that causes her to shake it makes my body soar and sometimes I need to go for appointments to people like massages to help me not be soar.  To help me feel better so I can fix it up quickly and get back to fun playtime with her.  I explained as best I could that I am fine, that there is nothing for her to worry about, that I'm not going anywhere.  Hardest conversation ever...  but by the end of it she seemed content with the explanation and we finished it off with a laughter filled tickle fight to lighten the mood.

Since that day thankfully I've been back on the upswing of better days.  This morning however out of the blue she came to me, tears in eyes again crying over GG.... I did my usual explanation over it's ok to miss her we all do but she's happy in heaven and we need to be happy for her.  I asked what else was bothering her, explained that often when she's upset over that something else is 'also' bothering her.  She simply cried and said "I'm sad cause I miss GG and I'm worried about you"  I think to myself, 'dear Lord give me strength'.... So on we go for another chat.  This time we talk about how when she has a soar throat or something we often go to the doctor to get some medicine to make her feel better, and how Momma has been going to New Brunswick to that Doctor who is giving me medicine to make me feel better.  And how sometimes we have things wrong with us like a soar throat or an ear infection and it doesn't mean anything bad will happen we just need time and medicine to feel better.  Assured her that I am not going anywhere, that just sometimes Momma needs some rest time so I can get the soar parts fixed and get back to the fun stuff again.  After a chat that was likely 5 minutes but felt like an eternity we simply cuddled for a while.  I asked if she was ok and understood and wasn't worried and she said yes.  So back came the tickle fight for laughs again....

Being a Mom is HARD.... It's especially hard when you have something like this to deal with.  When you try your best to put your game face on and hide the bad things but sometimes you just don't.  So the Mom guilt is pretty heavy right now.  I find myself thinking that I'm doing a bad job of hiding it.  That clearly I need to try harder.  It was easier when school was in as I could rest when the babes was napping and laze around if needed on a particular day and she was in school so she didn't notice any of it.  Then these situations of guilt make me also think of the people who are always commenting about how busy I am, how 'on the go' I always am and make me feel as though they think I'm full of crap.  Make me feel as though I shouldn't go anywhere, do anything fun and I certainly shouldn't try and look good.  The people that think because I dress nice and do my hair that nothing is wrong.  The people with the really bad assumptions because all they see of me is my 'game face' days... Maybe they should hang out at my house on a bad day, maybe they should be the ones to sit and have this type of conversation with a 6 year old that you try your hardest to hide the bad from but clearly aren't doing so great at it.  Maybe they should see the heartache in her poor little face and feel the guilt weighing down my chest like a cement block sitting on it in those moments...  Maybe then they would understand why on my good days I'm 'on the go' and doing my best to have enjoyable days of fun.  Or maybe I should just do what I typically try and do and ignore it because I know my own truth and that should be all that matters.  Sometimes harder than you would think however. 

I love my girls like nothing else in this world.  I will always do my best to love and comfort them.  I will continue to keep the bad days to a minimum, hide it as best I can and get up, stand tall, look as pretty as I can and make memories on the good days.  Bask in the joy of the smiles in my girls and not take any moments for granted.  Because those moments of joy outweigh the days of guilt and thank God for that...

The vicious cycle

I'm not sure at which point in the cycle it starts and ends because once it's going it's a bit like a snowball that's simply getting bigger and bigger.  Eventually and thankfully it breaks apart never really knowing where it begun or ended.  That's the best way to explain the 'off' days and the vicious cycle I often experience.

It may start with the tremors and your many muscles constantly being active which causes others to be tired and then in turn hurt.  It may start with the insomnia which leads to exhaustion which causes the tremors to be worse which causes your body to not have it's time to heal and in turn causes pain.  Where it starts I don't really know but when it starts each problem seems to get worse and snowball.  Sleep is at a premium often I can't sleep for no good reason at all, sometimes I can't sleep because my body is twitching and keeping me up.  But when you don't sleep the tremor usually gets worse as it is affected by exhaustion, stress, over exertion etc... Who knows why there's pain, could be lack of sleep, tremors or many other things.  In researching I've found that insomnia is a huge factor in PD and pain is often a very common complaint in PD patients as well that was often overlooked.  Some studies suggest up to 80% of PD patients have it.  But when the pain in my shoulder and often neck hits it makes sleeping even more difficult.  Hence the vicious cycle of unknown origin.  All I know is when they hit it kicks my ass.  I usually end up in bed a lot and frantically on the phone trying to get no notice appointments for things that help such as massage, physiotherapy, acupuncture etc... I'm learning that I cannot rely on a small 'care team' as they often call it.  That I need to have multiple physiotherapists and massage therapists in my rolodex that I can go to.  Because one never knows when I'll need such services and therefore pre booking appointments is not always possible.

I was in such a scenario this week.  In pain, exhausted, shaky and pretty much useless all while trying to get appointments for much needed therapies.  What started this round?  Who knows.  Could be still lingering from the 'paint day experience' from my last post.  As I rushed for 2 massages 3 days apart to try and ease the starts of a cycle then.  Could be from camping last week with the family and sleeping on an air mattress and simply being overtired from the fun.  Or it could simply be for no good reason at all, just because it happens.  Who knows?  Regardless, if it were one of those things and despite the agony experienced now it was worth it.  Because they were joyful events and moments that I wouldn't trade even if I knew what was to happen as a result. 

I think the 'off' periods and such viscous cycles are important in a sense.  It reminds you to really savour every moment of the 'on' days and to be joyful in every little moment that you're feeling good.  To bask in that glory and soak it all up.  But it can also be a bad thing because often I think you want to find such joy and happiness on those good days that perhaps you push too much to do too much and cram too much in before the next low because it will happen again and maybe that adds to it's severity.

At the end of the day there's no real answers.  You learn as time goes on how to manage off times whatever they may be.  You learn to cope with them, you learn to be happy for the good days and you get little pieces of new information that may help you tie it all together.  Might help you link the pieces and figure out what makes what worse.  What causes the next part of the stage to come or get worse or go away.  But it's also often still a guessing game.  One that can be frustrating, upsetting and put you down in the dumps.  But what I'm learning is most important is to remember on those 'off' days that the 'on' ones will be back again and focus on the joy from behind and that's to come in days ahead and to just keep on swimming.

Thankfully after a couple of days of whirlpool baths, heating pads, a day wasted in bed, the usual guilt that comes with that and two days of physiotherapy & acupuncture I'm on the upswing again to 'on' days.  The upswing of the good cycle again as opposed to the vicious one. 

And on that note, here's hoping on September 7th it's an 'on' day, as I've decided to participate in the PEI Parkinson's Society SuperWalk to raise money for Parkinson's.  Although I'm still on the suspected list and not officially diagnosed I certainly feel a connection to it already for obvious reasons.  So I felt it was important to participate.  If you would like to support me in this you're welcome to make a pledge.  Or better yet, if you'd like to participate in the walk with me and join my team, even better!  I'd love the support.  There's a 1, 2 & 3k option and if I'm having a happy body day I am hoping I can possibly run all or at least some of the 3k, so some team mates for motivation would be greatly appreciated!  To donate a pledge or join my team you can visit the link below & thank you!
http://donate.parkinson.ca/site/TR/SuperWalk2014/MR_superwalk?px=1025204&pg=personal&fr_id=1169

"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!