What do you need?

[marmalady]

Hi everyone,

Welcome to our newbies - I hope you find the CareCure community as valuable as I have, both in information and emotional support.

For everyone - There's a post on the Life Forum by Steven Edwards that asks, 'what do you need to get your life going? What's holding you back?

I'd like to ask the question of all of us caregivers out there, also - what specifically do we need to happen, to regain some sense of normalcy (whatever that is!) in our lives? Is it lack of aides, physical exhaustion, living space, schedules?

Can we give ourselves a time frame - say, in one year, we'll be doing this to reclaim our lives; does anyone feel 'guilty' about wanting/having a life of their own, when their spouse/child/sib has a spinal cord injury?

It's getting toward the end of the year; that means a new year is beginning, a new chance to look at ourselves, our situation, and maybe a rebirth of our sense of who we are, separate from our family members and their needs.

God bless us, every one!

[joseph]

Good stuff. I'll think more on that. I think we have alot in common Marmalady, by the way what is your first name?Our boys are almost the same age, were injured around the same time and have the same level of injury. Very interesting.

[marmalady]

Bumping this up - it's an oooolllld post, but timely I think for some of our newer members!

_____________
Tough times don't last - tough people do.

[marmalady]

Bumping up again for the new year!

[kate]

I need a reason to stay hopeful.
I need to have my mind engaged productively.
I need to know I'm not alone.
I need time in my garden.
I need silliness.
I need good books to read.
I need a double tall nonfat latte, extra foamy!

[PN]

Moving forward in life while in a wheelchair:

In real estate there is a saying "location, location, location" and this is what is most important about buying a home or the location of a business. For people with spinal cord injuries, I think, from my experience, the saying is "stability, stability, stability."

I need dependable caregivers and a long-term "fix" for this new problem so I can have "stability."

PN

[SoulMate]

I need a
vacation
vacation
vacation
[img]/forum/images/smilies/smile.gif[/img]

We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

[Pam Baureis]

When David moved in with us, I needed more space. Well I'm getting it. We will start building the addition in about 1 month. David will have his own room 25x25 and a carport too. The next thing on my need list. (which is very long). A Dishwasher with David and all his friends coming over I do alot of dishes. I'm happy to have my son with me.

Pam Baureis

[marmalady]

Ahem- Pam - Get some of those big, hungry, strong bodied friends of David's to roll up their sleeves and help with the dishes!!!!

What do I need? My list would be very close to Kate's - thanks for putting it into words, Kate, ya made me cry!

[kate]

Jackie, dear! You're one of the people who makes me know I'm not alone. Did you read HandiBob's post in Cure? Lifting his hips off the mattress???! Now that's what I call a reason to stay hopeful. [img]/forum/images/smilies/smile.gif[/img]

[marmalady]

Dearest Kate - and everyone else -

"Hope is like the sun which, on our journey toward it, casts the shadow of our burdens behind it. - Samuel Smiles

_____________
If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

[KDK513]

Beautiful thoughts everyone!

[Obieone]

I usually haven't got a hot clue what I need ....until after the fact... [img]/forum/images/smilies/biggrin.gif[/img] I do know I need to feel validated!! I know I need you guys ...

Probably take you all for granted...don't really mean too...but I do know I'm awful glad your here to "use and abuse"!! [img]/forum/images/smilies/biggrin.gif[/img] [img]/forum/images/smilies/rolleyes.gif[/img]

Thank you! [img]/forum/images/smilies/smile.gif[/img]

Obie

[Stacey]

I agree with Soulmate, I need a vacation! Some place alone and warm, lots of sunshine, no doctors, no fighting with insurance companies and no teenage kids! It's been 18 months since Joe's accident, and I am exhausted. I miss all of you and the support I get here. No one else understands how hard this life can be except fo all of you who are in the same boat. Thanks for being here!
Stacey

[espousal]

Originally posted by Stacey:

It's been 18 months since Joe's accident, and I am exhausted.
Stacey

Stacey,

This sounds very familiar, and it also sounds dangerous. You are very new at this SCI life, as am I. It's a hard road for sure.

Since this is in the caregiver forum I feel completely qualified to espouse.

Your recognition of exhaustion is a valuable indicator of the need to take care of yourself as well as your husband. My wife is 14 months post injury, and I share the same feeling of exhaustion. It's not just physical, but the emotional drain from fighting with insurance companies, consulting with doctors, locating quality PT, home modifications...

It all drains you. And yet, you feel as if you have no room for complaint or expression of your grief. You can look at the burden placed on you and compare it to the burden placed on your spouse; and feel guilty about needing to take a break or thinking about yourself at all.

I'm learning, very slowly and very reluctantly, that I need to take some time for myself. I need to wake up early and go for a run, spend some time in the gym, sit down with a book and not think about SCI for a few goddamn minutes each day.

When I don't take the time for myself, I feel resentful and angry about my wife's injury. When I do, I can embrace the fact that she is alive and doing well, and able to enjoy life to its fullest, despite the injury.

Bottom line: It's important to take care of oneself also.