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doublenjenn7 
11:20pm
Physically bad...and then guilty because everyone has to help you out all the time.
I know I can't help it.
I know I can't do anything more than what I'm already doing.
But I was bless/cursed with the strange ability to be able to pick up on others' emotions and feelings.
I can read how people (friends, family, even strangers) look at me now.
The best is when people haven't seen me in awhile.
They stare at my wheelchair and stare at me....
wondering over and over again what it could possibly be.
I never talked much about PKD...even when it got very painful I still only spoke to a select few about it.
Now...
in just a few weeks....
it'll be a year with chronic pain.
6 months with this seizure disorder....
and every day is a battle.
Not only with the pain...but with the mental anguish I feel at times.
I try to stay in my brain to ignore the pain...and I blab a lot and...haha...well, can get way too positive and bubbly but hey...it's all I have most days right?
People should just laugh at it with me.
But it's hard...
it's a big game of acceptance for me...
and also for my friends and family.
My family's kind of funny....they just live in a state of denial.
I don't know what's more frustrating....that...or the fact that my friends avoid me like the plague now.
I was such a party girl...such a go getter...lol
Now I'm slow and can't get out of bed most days.
No one really LIKES to come to visit....they can't handle it...
But sometimes they force themselves...and I usually send THEM home because I can feel their pain at having to look at me and feel helpless.
*sigh*
I try to explain that their company means more than anything....but...yeah...people are people...and I can't change people....
I can only change MY perspective....
Well, not much more to this than the simple fact that I needed to "write it out"
Back to bed now....
I hope everyone is feeling well or as best they can...
It's hard...but I know we can do it...
I know it...
<3
Comments
im sorry to hear about your pain. you might want to look into biofeedback therapy to learn pain management techniques. I think it can really help you a lot. I've seen patients improve their control over chronic pain at my clinic and it might be worth the try. In terms of your family and friends, they are adjusting to your situation as much as you are trying to. They need to evolve in a way that allows them to accept your present state, and this may take some time. Know that this is new for them, and that they love you very much. hold on, and keep your spirits high! there is so much you contribute to so many, so spread some of that love to yourself! you deserve it!
onlyu627
:) thank you so much!
I needed that reminder....
I'm practicing more and more every day with just focusing on my positive affirmations and my breathing techniques...and once I get it...I get it.....
and you're right...it's an adjustment for all of us...
it will just take some time
*hugs* thank you again :)
doublenjenn7