Just sharing

[LightLizard]

have some peace friends...

http://www.youtube.com/watch?v=hH_8tCXe_J4

 

[paris]

I always look for your posts.  Give my love to The Wife.   

[The Wife]

Love received.  Thank you Paris. 

I seem to be in a bit of a reclusive mood these days.  Not a bad mood, a sad mood, or really any mood at all...

Loving spring.  Loving the symphony of robins that sing outside my window.  Loving the days that are good for my partner and accepting and doing the best with the days that aren't. 

And then a flower blooms...

 

[LightLizard]

http://www.youtube.com/watch?v=o1--tDsJ2w4

 

 

[breezysummerday]

LL,
I love it when you share your musical talents
This is a lovely relaxing set

 

[paris]

I look forward to your posts, and was very glad to find one today.    Thanks for sharing your music, your thoughts, your peace with us.

[The Wife]

Spring is over and my dream of my partner and myself going different places by bus (now that we both have bus passes) didn't materialize.  After he had his pacemaker implanted in October and got the use of his legs back, we thought this would be the spring to do a few of the things we've been missing.  Oh, I had it all planned.  We'd go to the park and the beach, catch different buses and go to different nature places in the city.  Pack a lunch, hold hands while walking along the water.  Go for coffee.  Go out.  Wrong. 

Now it's his feet.  They've bothered him for quite awhile now but the neuropathy has gotten worse.  Yesterday morning, I witnessed the stagger, or loss of balance, as he walked from the kitchen to the dining room with a cup of coffee.  "Don't worry,"  he said.  "My feet aren't doing what my brain is telling them to do but I'll make it."  And he did. But it wasn't easy.

He can't take the medications, probably because of his liver and heart, and he can't feel his feet but he can feel the floor.  He can also feel the pain. 

I wish people understood just how many things kidney failure affects.  And I wish they had compassion. 

Sometimes I forget to be compassionate.  Like the other day when I came home at 2:30 and he still hadn't had lunch.  I automatically assumed that he was just being lazy or expecting me to do it for him just because I usually do.  "Can't you make yourself lunch?"  I asked in a huff.  "Do I always have to have something prepared for you?" 

And then I felt like hell.  Damn.  I should know better.  I know he can make something when he can stand long enough to do so.  I know he wouldn't allow himself to get to a point where he feels like he's starving.  And I know he doesn't expect me to do anything.             

Ah, expectations.  Expecting that things would have gotten better once the pacemaker was inserted and the right dialysis was found.  Expecting we'd have some kind of normal like other couples.  Expecting that he could easily walk outside.  Expecting that we could wake up one morning and find that this was all a bad bad dream.

Expection.  Ummm, now that also applies to me.  I expect myself to always be supportive, in a good mood, and happy to do what he can't.  Expecting that I would never get tired of being a caregiver.  Ha!  Expectations of myself disappointed me and when we don't get what we expect, we suffer.   OK.  Back to the drawing board. 

Accept what is, let go of what can no longer be, and have gratitude for all we have. 



Check.

             

       

[okarol]

Makes me think of the quote, "Stop expecting and start excepting."

'Cept I don't wanna... 

[The Wife]

Great quote. Never heard of it until now.

[The Wife]

I've given up expecting anyone to come over and help ME with the housework but I sure could 'except' if someone offered.   

[okarol]

Makes me think of the quote, "Stop expecting and start excepting."

'Cept I don't wanna... 

OK now I know I am losing it-- the quote is supposed to be, "Stop expecting and start accepting."

Wonder if there's a Freudian slip in there somewhere? 

[The Wife]

I thought it was clever. 

Except.  I accept all that is taking place, except how I feel about it right now. 

For some reason, I'm  feeling a bit angry over this again.  Maybe it's the nice weather reminding me of what we can't do, or the people that keep telling me about their vacations or evening walks they're taking.  Or maybe I'm just tired of having to do it all.  I also live with pain but there's no one to help me.  There it is.  My own pain.  My resentment.       

I know I'm a natural caregiver, responsible, always there for the kids and anyone close to me but geez, does anyone ever think that maybe I'd like a phone call where they're not asking for something?  Perhaps an offer to do something like dishes after they come over to eat the meal I've cooked?  Or an invite and not because you need me there for your own reasons?  Good ole mom, always there, always willing to push through because something has to get done and I'm the only one left to do it.   

And there are the friends who only call when they need someone to talk to about their problems.  In conversation they always ask how my hubby is doing but then quickly go back to unloading on me.  God, how I wish I could tell them I don't have the energy to listen to how messy their house is because of the big renovation just done.  Or I wish I could say, "Will you please listen to me without changing the subject. I know you think your daughter's artwork is going to cheer me up but what I really need is someone to listen.  And to listen without judgement if I need to complain about all the things my hubby can't do.  I don't need you to bash him and I don't want to get on the man bashing wagon either. 

Boy, I really am in a mood.  As a caregiver, I know I need to be strong.  For my hubby, for the kids, and yes, even for myself.  But what about the days when we don't feel strong, or we're sick and tired of our spouse being sick and tired?  Or we just need a vacation?  How do we find nurturing when there's no one to nurture us in the way we wish? 

I guess the first thing to do is to admit how we're really feeling without feeling guilty for our feelings.  OK.  I'm angry and I'm accepting it.  I think I'll roll in it for awhile, cover my body as though it's mud.  Maybe I'll even cover my face, shake it, and watch as mud flings on the carpet.  And then I'm going to step on it, mush it, and not give a damn that it has to be cleaned up. 

Ohhhh ,now that would be fun.

   It's good to know I can always come here.

[The Wife]

Now that I've gotten all of that off of my chest, I can return to seeing a few good things. 

I found a braun food proccessor for $15 at a second hand store and I've been looking for about three years.  It is a sweet machine that cuts my working time in the kitchen way down. I am so graterful to have found it. 

And after what feels like a forever wait, I will be attending eleven sessions at the pain clinic starting next week.  There are usually twelve but because of Canada day, one is taken off the schedule.  Once these sessions are done, the door opens to different programs such as yoga, art therapy, councelling, etc.   I'm looking forward to this and even though I can't draw or paint, I'm thinking art therapy might be something to sign up for...and the yoga classes too.  Ummm, I just might get my nurturing afterall.   

I know I've said it before, but I want to say it again.  I appreciate this site and all who share.  I also appreciate being able to write and work things out here.  Writing helps sort things out.  It helps discover and release whatever I'm hanging onto and maybe what I share can help someone else.  Even when I'm in a mood.

[willowtreewren]

I know I've said it before, but I want to say it again.  I appreciate this site and all who share.  I also appreciate being able to write and work things out here.  Writing helps sort things out.  It helps discover and release whatever I'm hanging onto and maybe what I share can help someone else.  Even when I'm in a mood.

And I, in turn, appreciate being able to read your posts and your internal process that echos in my own processes so often...

Being angry and then being angry at being angry. Sigh. It isn't easy being the caregiver, but I have to remind myself that it is easier than being the one with renal failure.

Thanks.

[The Wife]

Thanks Willow.  Yes, a reminder that it's easier than being the one with kidney failure.   I don't know how my hubby stands it.  Sometimes I think that maybe I get angry because there isn't anything I can do to make him better.  Seeing him stagger was hard to watch, especially knowing how beautifully he used to once move.  Especially when he did tai chi.  He could balance on one leg and kick the other almost straight up.   And now...

Thanks for listening.  I need to remind myself that it's ok to share with others the not so good feelings.  Perhaps we all do.  Patients, caregivers, and family members....

I have returned to peace.

 

[breezysummerday]

And after what feels like a forever wait, I will be attending eleven sessions at the pain clinic starting next week. 
..................  Ummm, I just might get my nurturing afterall.   

I'm so happy for you!  I hope you share updates.  It would be fantastic if the
clinic referred you to a professional massage therapist.  I hope that there is
not too much tissue damage. 

Oh Happy Day!  My friend is going to get her pain issues addressed! 

[The Wife]

Just seeing you brings nurturing Breezy Deb:)

Not sure if I've mentioned it or not but I had a spinal fusion years ago, have arthritis around the area and a nerve caught up in the mix.  Get sciatica real bad.  One of my vertabraes above the fusion has also slipped backwards a bit.  And then there's the arthritis in the knee and in my toes...I really do get worn out from doing every day things.  And if I overdo it, the only thing that touches the pain are two T3's. 

A massage sounds wonderful.  I bet they have one of those too!  Now I'm really getting excited about going.  I just know this is going to be so good for me.  When caregiver takes care of herself, cargiver can give more easily with joy.  And not only will this help me, I'll be able to pass info to my hubby.  Maybe something I learn can help him too.   

I'll let you know how it goes. 

How are you?

xxxooo

[pelagia]

Dear Wife - I agree with willowtreewren. Somehow reading your posts is like letting it all out myself.  Thank you for that.  And, even though we're not sitting in the kitchen with you, rest assured that we are "listening."   

[treehugger]

For some reason, I'm  feeling a bit angry over this again.  Maybe it's the nice weather reminding me of what we can't do, or the people that keep telling me about their vacations or evening walks they're taking.  Or maybe I'm just tired of having to do it all.  I also live with pain but there's no one to help me.  There it is.  My own pain.  My resentment. 

Wow, your whole post felt so familiar to me; I have experienced every one of those feelings and thought all of those thoughts at one time or another during my time as a caregiver. It's been said over and over, but it is such a relief to know that I am not alone. 

Kara

[breezysummerday]

Art Therapy?

That would be so cool if you could tie in some type of
art with your writings.  A boxed set of cards or even a
calendar with your words of wisdom super-
imposed over original art....wow!

I'd like to hear a bit more about the pain clinic
after one or two sessions.  So, hoping you update.

treehugger:  "your whole post felt so familiar to me"
That is the beauty of Miss Joie!

[The Wife]

Interesting that you should mention cards.  After I was downsized from my job  in 2002, I took a business course sponsored by EI.  Took my poetry and photography, and tried to create inspirational cards.  To my surprise, my business plan presentation was voted by the class as the Oscar Winner.   I didn't think I had a business bone in my body.  I planned on continuing but I was dealing with a leaky condo, knew I'd have to say goodbye to my home,  and didn't have the money for supplies.  I felt like a failure again.  And then Wayne got sick. 

Reading all of your responses touches me deeply.  One thing I've realized is just how much I miss having good friends.  When I think back to the conversations only women can have, I smile, shake my head, and chuckle out loud.   Due to the downsizing, those who were close to me moved away, some I simply lost contact with, and others became too busy with their lives.  I miss the sharing of our hearts. 

All of our hearts have bled for those we love but through sharing, well, here's a little poem I wrote a few years back:


through sharing, we unlock
what needs to be set free
in the hearts of others

through our courage
we insire another
to find their own

through compassion
we're given gifts more beautiful
than we can ever imagine


Today, I add:

through sharing, we unlock
that which needs to be set free
within ourselves...

Thank You 

[Inara]

 

Your poem is beautiful.  Thank you for sharing it.  It's always nice to come to here...nice to know others feel as I do sometimes. 

[The Wife]

  

[willowtreewren]

Being human means connecting with others. Your sharing with us helps me feel more connected.

Your poetry is lovely.

Thank you.

 

[The Wife]

Hubby and I have been talking about a transplant.  There are a lot of questions, espeically with his heart and Hep C, but it looks like we're going to get a few questions answered afterall.  He got a call yesterday and we'll be heading to the mainland on Tuesday to see the transplant neph and social worker.  I've had to cancel my appointment at the pain clinic for that day but they said I could make up the session at a later date.   It's also Baxter delivery day but my neighbour will let the delivery man in.  Ever notice how everything seems to happen on the same day? 

We've only been waiting for two years and eight months to hear from the transplant people.  Better start writing my list of questions out....