A STRANGER TO MYSELF!

[CaroleL]

All my life I was a hard worker no matter what I did. I'm 50 years old. It was only 2 years ago, while making coffee, that my life changed. My MS journey began. No more walking unassisted for me. I came to grips with that.

For about the last 5 months, I'm unable to walk at all. I became bedridden and can transfer to a wheelchair for short periods. That meant being confined to 2 small rooms upstairs.

I thought I could handle it!

I never spent a night without going outside and looking at the sky, rain or shine. I loved gardening, flower gardens, food garden, etc. I have a river in my backyard, a dock and a boat.

I have grandchildren that I love to take for walks, to the park, or just walk for the sake of it. I love refinishing old furniture. I love to paint so much that I once worked as a painting contractor.

Before my brain got muddled, I used to teach and train people about using the other 90% of the brain. I was a life counsellor. DH is a contractor and I loved going to work with him and helping him out.

I was a very good cook!!! It's my passion! I have a beautiful Black Labrador, sent to a friend's ranch on Monday because he was an unhealthy 140 lbs. I haven't been able to walk him.

I'm unable to find a home that is easily adaptable to my needs. Our finances were depleted by various therapies and medications.

I have nothing left to lose! Thank god for my hubby and children!

The question for me remains: WHO AM I?

A Rapunzel from the second floor? I feel like I'm in a stranger's body. My body is supposed to be an expression of who I am.

I admit that right now, I'm depressed. But all I've been thinking about is.

This is my Ground Zero... If I could define who I am, that would give me the building blocks to create a new life for myself.

Will this stranger of a body let go of it's hold on me.

I've never ranted so much and I am sorry but I'm seriously looking for some input that will drag me out out this dark place.

[Jules A]

Hi CaroleL,

I wish I had some wise words for you. All I can offer is my admiration for the bravery you have shown for writing what so many of us live every day.

You sound like a dynamo before this thief of a disease came uninvited into your life. I will keep you in my thoughts and prayers. Jules

[Thinkimjob]

Hmmm. It's definitely a disappointment when your body lets you down. It's even more disappointing to know that it's unlikely to get much better.

However, we're all so much more than our bodies. Yes, we're an expression of our bodies, but there is a lot more. I always felt like that.

I really do believe that. I know our stupid brains let us down, what with cog fog and all, but there is something else.

Sometimes I sit on the couch and just start laughing. Sort of looking at myself from outside. How the Hell did this happen? Why are these legs so useless? Why can't I feel my buttocks?

You either laugh or you cry. Sometimes both.

[mjan]

Oh Carole, I am sorry for all you are going through and I appreciate that you are brave enough to share it openly with us. That sure tells me something about your spirit!

You see, Carol, your spirit is fighting for you!! To me anyway. Your spirit is assisting you in re-defining the you that you are today. To me, you are in transition. Moving toward a more highly evolved spiritual woman who's moving toward her next "calling." Agree or not?

Now I am sorry for all the losses and changes you are going through. It must stink to be "repunzel"!!
To me, Carole, you need to grieve these changes and losses.
To me, you are not pretending.. you are in the moment.
So it is okay to feel any way you need to right now.

So perhaps, Carole, what you are going through right now are the stages of grief. Do you know those stages? Shock, denial, depression, bargaining until hopefully one reaches acceptance. Oh and it does not flow easily from one to another, check check. Rather we often get stuck. Rest in that "stuck" place if you are..and reflect on it.

It is NOT okay that you are stuck upstairs inside the house.
It is NOT good that you feel you have no control with a lot of your situation.

Be mad! Be Angry..get it out!!!
Scream, cry and vent all you want !!
Keep going, be mad so you can be glad!!

Some of us folks are not comfortable being angry nor often are we allowed AND as a female not encouraged to be angry as it is not so "feminine"..well I'll be....
I will validate ANY emotion you have as your truth.
I will not take away whatever you need to feel right now.

But you need to teach others how you want to be treated.
If you are lashing out, own it, and inform others you are in a bad mood. If you hurt someone in the process, well,
apologize and explain how you want to be treated. Tell them you need a time out from being "nice".."sweet" etc.

Our emotions are neither good nor bad in my book. I can already tell you have a heart full of love. So dump some of this on us today. Go ahead...dump it all on us! That way you are now making room to RECIEVE MORE LOVE~ and for your healing to continue..

Perhaps your spirit wants you soo angry that you can dump it out and make room for the NEW you! The wonderful woman with a heart of love.. so talented..
so sensitive.

Have you told folks, friends, family and church folks that you need to get out? I know you may have to pace how often. But I bet if they ONLY knew how sad and trapped you are feeling, they would come over and visit.. they would find a way to get YOU OUT OF THERE!!

Carole.. do you ASK for the help you need now? I mean make a wish list and let others know. When folks do not hear it directly from our lips, they assume we're okay.
Clearly you are not okay right now... and that is okay!

What helps me, when I get in a funk, is to find others stories who are much worse. I am not losing a child, a loved one is not suffering with cancer..I am not homeless and scared.

I try to find things I CAN still do.
I volunteer online to answer sad crisis letters
from all over the world. It makes me feel as if I can contribute, give back, using my people skills once again.

You are free to contact me via email any time you like
I am home near a computer most of the day. I am serious.

Keep coming back here, vent, share, cry..we're always here. I and others here will walk this journey with you.
So know you are never alone..

Hugs my dear..I cannot wait to witness the NEW YOU
trying to come out!

Jan

[sirfallsalot]

I refer to my alternate ego as the alien. It is not me. I must say that since starting a med for treatment for this disease the alien part has disappeared.

[Tawanda]

First of all, I agree with Jan. I see spirit in your post and great intelligence as well. You have a supportive family and it seems like you are financially stable, and that puts you in a better place than a lot of us.

But enough with the counting blessings. I have many I, too, can count, but I feel like I literally died in 2004 when I got M.S. A new me was born at the same time, but it's more of a "Bizarro" me (if you have ever read Superman or watched Seinfeld!). I never left the "anger" stage when it came to being diagnosed, but sometimes I feel I'm actually better off staying here than moving on to "acceptance".

I wish you the best and as an animal lover, I realize what a huge sacrifice that you made with your dog. I have a SIL with advanced MS, and as you may guess, her dog is very fat. I wish she would do what you did...her dog is so under exercised that a once friendly dog now snaps at people out of pure frustration!

[Cat Mom]

Carole, you are a beautiful spirit as I've read lots of your posts offering advice or just a kind word to brighten someone's day. Jan's reply is one of the most heart-felt things I've ever read, I can't offer any better words other than to echo her sentiment.

We're all here for you when you need to 'get it out' as you have been for us, so don't apologize for venting.

One last thing... I also have an overweight dog who is currently eating prescription food from the vet!!! Dry food $77, canned food $55, treats $9.99. I truly understand how hard it must have been for you to send him to your friend's ranch.

Please let us know how you're doing today, sometimes it feels like a new day after letting it out.
Jen

[Toomnyhats]

I can't say it better than Jan so I won't even try. Just know that we are here for you whenever you need to vent!

<<Big hugs>>

[fishead]

CaroleL,

I felt compelled to post on this thread because I have "followed you" since you started posting here. I have always noticed how insightful you are and how you show such empathy for others.

It is my belief that we are on this planet for a purpose. The trick to that, is we don't know what the purpose is. When I lost my career, from MS, I felt like someone had "shot me down". I feel/felt that loosing my career took a large hunk out of "who I am". It took me 5+ years to realize that I simply have a DIFFERENT purpose now. You too will eventually understand what your new purpose is. Hang in there and KEEP GOING.

Namaste,
LaTish

[CaroleL]

Thank you everyone for your responses!

I'm just kind of numb today. Just when I think that I've accepted this, I get knocked down again. Mjan, you're right, I seem to revisit some of the stages. Acceptance, for me, is never a done deal. Every time I wake up to the inevitable, I have to accept all over again. I sit by a window and watch people living. I only exist.

My sister, among others, expects me to fight MS! Do not accept it, refuse it... and heal yourself! All of the classes I gave about the power of the mind... I should use this to heal myself and walk again.

Nobody can come and take me out because I almost have to be carried down the stairs. If it weren't for that, I'd be taken out more often.

The question of whom I am now still remains! I know I won't answer that one in a day... but the process is exhausting.

I hate MS, but I love me! I won't have the same kind of life I had, but I AM NOT MY BODY! I only live in it.

HUGS to all of you! And thank you for your support!

[Seasha]

I hate MS, but I love me! I won't have the same kind of life I had, but I AM NOT MY BODY! I only live in it.

How right you are about this, Carole and don't forget that we love you too. Sometimes when our bodies fail, we can bettter gain and understand the inner nature of things. To us, you are insightful and inspirational. You may not be able to do what you did, but you still have so much to give. Isn't that what life is all about anyway? ~~loving and giving~~

[aitch10]

First of all, I'm so sorry you're having such a hard time right now.

Secondly, and I say this as someone who has just came out of several years of wallowing in 'grond zero,' it DOES get better. It may not seem so right now, but it does.

Without rambling or sounding too cheesy, I've come to terms with the fact that life is a gift even if I am not how I imagined myself to be.

::hugs::

[Tia1]

Carol, just wanted to let you know that I am thinking of you today and praying for you as well.

[tellnhelen]

Wow..what wonderful responses you have received. Hope they have helped you to see that it's not over.

Here's a suggestion for young grandchildren. Get yourself a Wii Video game and learn how to play the games. (wheelchair friendly) When your grand children come over they will be amazed that you know about video and can play too.

I know it's not the same as taking them out but it is an idea for spending time that they will remember.

I feel your pain. Good luck with making adjustments we all do

[melwah]

Hi Carole,
You said "If I could define who I am, that would give me the building blocks to create a new life for myself. "... What if you tried it the other way around? You seem to know what your passions are, as well as your limitations. Why not use that to start building, then the blocks/foundations that appear may reveal hints for defining yourself? wishing you all the best