Birthday's and Spirited Away
5 months ago
This about enjoying life to the full with my lovely partner- I scream my head off here so I can pretend to be coping when I have to. MS has robbed my darling of the use of much of her body but has increased our determination to share our love to the full and get as much fun out this world as we can glean. Sometimes it all gets to much so I need to scream about it.
3 comments:
You are right. There is no substitute for flesh and blood friends. They are fantastic for sympathy and distractions. The closest ones can even provide a bit of understanding.
And still, I know that I am better for having met you and Herrad through your blogs a year ago. Reading the list of daily duties you compiled made me scream out "I'm not alone!" In the year since, I've selfishly used your blog as a place to say and discuss things that I don't feel comfortable discussing in front of BR's family on our blog. I swear his mother keeps a list of all the issues I mention and wants regular status updates. She's been through all this before several times and doesn't understand the mental paralysis I'm suffering as a newbie.
One of my favorite quotes from BR's favorite movie is "Get busy living or get busy dying." I often feel as if BR and I are in a limbo between life and death, and it's my duty to keep fighting for the good life until it is time to push for death. Problem is, most days I don't have much fight in me. On the other hand, when I do, life is good. Call that manic if you will.
My hope is that you and Herrad will find the strength to have many enjoyable days rediscovering your city and its people. Laughter is just a silly stranger away.
Hey Richie! Personally I think the manic phase is our caregiver 'secret power'.
In our story, as caregiving has grown to 20 years its consuming demands made it nearly impossible to keep 'real world' friends in real time. Through the Internet I first learned that I was not alone.
Somewhere along the way a balance of Internet and reality has evolved.
Caregivingly Yours, Patrick
I know this is an old post - but I feel chatty. Hope that's ok.
Discussion boards can be hell. No matter what you discuss - from cat care to parenting to plastic surgery to vacations to health - you can find yourself in a most vicious exchange that's hard to comprehend. I usually have my guard up now in these environments and revert to irony and cracking jokes. I can't really discuss extremely serious topics there anymore - for all the reasons you've mentioned.
Breaks are the best - they've always helped me.
Hmmm... but it seems I have similar problems with my real friends. They often don't get it either and say something so stupid I certainly didn't want to hear.
I don't know about you and Herrad, but I often feel we are our best just left alone. Cocooning - gotta love it.
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