Aug 13, 2014

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!

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