A day in my life

I wake often during the night and early morning but now it is time to arise. I can barely remove myself from the bed - the pain is excruciating. My joints are screaming, my sciatia dibilitating. I barely shuffle through the house searching out my purse. I take my meds. I wait. I wait some more. I try to do something -make coffee, make the bed, etc. The time is not right, so I wait some more. And then that window opens and I rush around "doing" this and that - as much as I can until that window closes on me once again. It may be an hour, maybe several. This defines a good day versus a bad day. Off to work, struggling all the while with my balance, my gait, my fumbling,my slowness,my cautionary way of doing anything and everything. I pack my day with as normal activity as I can, although to watch me you know I am not normal - the way I execute even the smallest motion is a telltale indication of my affliction. But I am relentless in my efforts regardless of the onlookers. I return home exhausted - never exhilirated. In the peacefullness of my home, my safe haven, I feel the window closing and know meds are due again. So I wait and I wait. And when the window opens again, the world is asleep and I am alone with my thoughts. Dare I go to bed and begin the cycle again or shall I begin one of my never ending projects to delay the inevitable - I wake often during the night - this is my third "get up". And so my day is beginning again.

8 Replies

oldestnewest
  • Well said - every little thing takes so much effort.

  • Thats a great description of a day in the life of Parkinsons. A day at a time and always start it positive. x

  • Yes very much how I feel except my windows are usually one hour on, one hour off throughout the day. Sometimes, I can ride out the off, sometimes I just have to work on through the pain and sweating sometimes I am lucky and can nap but every day is different.

    I too pretend that I am well although its obvious I'm not. Its what you do to cope

    Good luck

    Ron

  • Sounds like my day except I am retired. My pain is in my abdomen and when it's not pain it's pressure. I have to be so careful of what I eat and when. I try to find something I enjoy to distract me. My exercises classes for parkies are a highlight of the week. Everybody understands. Hang in there.

  • Very well said. Very much like my life, excpt without the pain during the day. Pain is mostly at nite. Much more off time than on these days......have to plan my day accordingly. Three hrs sleep at a time at nite. I manage with two 1 hr naps during the day.

    Just keep on keeping on............ :-)

  • I, too, can relate. I have discovered that even in the depth of my symptoms my 'philosopher' reminds me that "when I mourned having no shoes I met someone who had no feet"

    I'm not moralizing, rather I am talking to me... And anyone who wants to listen. I'll add that PD is not my only Dx, I am blessed(or cursed) with four ailments which could be a primary Dx. PD was just the loudest voice so I get lots of practice. Here's other familiar response to questioners "just keep putting one foot in front of the other". Oh my pain is a 24hour resident in my body, what matters is the intensity.

    By the way does the 1-10 pain measure make anyone else laugh and and wave a dismissive hand?

  • Pretty much describes 1 of my days. I'm so glad I found this site you guys are great. It's a nice feeling to know you're not alone thanks

  • Hi everyone..just read your day in the life cathi...and its a great description I am almost tempted to write it down and hand it to my doctor or anyone else who asks how I am. Not that I'm moaning or anything just that it describes what it feels like so accurately..

You may also like...