#171 - Reality Check 101

I believe the time has come to admit that my life as the choo-choo engine that could has evaporated.

I turned 45 this past week. And I got to thinking that I am really tired of fighting, fighting, fighting every day of my life to be the person I used to be.

Quite frankly, the person I used to be is not even someone I would chose to be around any more. That person wasted time on being busy; believing that being busy was a sign of one's importance. That somehow managing to schedule every living breathing moment of that old life sent out the signal that I was important, or that I had achieved my goals, or that I mattered.

Yep... loads of pride.

And pride has been what lupus has stripped away from me layer by layer by bulky heavy layer.

When I left work due to disability, the pride that I wore like a heavy armor took a beating. If I could not work... then who am I?

I fought hard to recuperate so that I could return to my career. I felt like I was drowning in an ocean. Actually, I was drowning in the "sea of me", but I couldn't see that. Too many salt water tears in my eyes as I grieved for my "old life".

And here's a real kicker when you get whomped by disability... the bills keep pouring in. The disability payments do not. Our family income was sliced in half. We started selling off things just to cover the bills.

More pride was surrendered when I had to admit that I was not going to be returning to any job any time soon. We had to file for a deferment from my student loan that had paid for graduate school; graduate school training for a career that I could no longer participate in.

Every time I talked with the student loan peole, I bust out into tears like someone had just told me that a loved one had died. Yes, it was that bad. I felt absolutely humiliated. My husband took over in order to protect me from the constant upset.

Yet, another layer of pride flew out the door when we finally decided to sell my car. I was notdriving to work any more, heck... I could barely drive any more. I waved good-bye to my object of freedom and swept some pride under the rug.

I was not the poster child of patient endurance through all of this. I kicked, screamed, ranted, cried, and fussed the whole way... only taking time out for a nap or two.

So with the exception of two, my old friendships dried up and drifted away.

I always thought I was a good friend. Swallowed some more pride and spent a lot of time feeling sorry for myself for being abandoned.

I still had enough pride in me to forget to think about the reasons why those friendships ended and owning my role in that.

I worked myself into enough of a stew to determine that since I was home full time I would prove to myself and everyone around me that I was super mom and super wife. I chose to forget that this body was not with the program. I worked myself up into flare after unbearable flare by forcing my body to do chores and tasks that it was no longer capable of doing.

Instead of asking for help, I piled up the clutter in an extra bedroom and slammed the door shut. Pride has no boundaries, including stealing floor space from the family.

Eighteen months after being told officially by the medical folks that I have a disability, I had to sit in front of a judge with a lawyer to PROVE that I have a disability. I had not even acepted that I had a disability... that whole scene was surreal. Begging for what I had put into the system from years of employment was one of the most degrading events in my life. (And this said from someone who has survived abuse.)

We finally got the disability income. The settlement just paid off the debt that had accrued. My old lifestyle of popping into a store and buying whatever whenever I wanted to was long gone.

More pride trudging out the door.

Throughout all of this upheaval, I clung to maintaining some kind of public face. I wrote about these hurdles with lupus. I wrote about other interests, and I cartooned. But, I was always chasing the carrot at the end of the stick. My pride was still in the driver's seat dictating that I HAD TO BE the BEST. Overachieving, trying to prove to everyone and myself that I was some how valuable because my writing was receiving recognition.

In the meantime, I was continuing to sacrifice my health in order to keep up the pace reuqired to pull in that kind of attention.

I have juggled too many projects at once, trying to hard to please my pride. She is a ravenous task master.

I wanted to launch a fully functioning web site this autumn, but I just can not. I wanted to be cartooning several comic strips a week, but I just can not. I want to blog every day in each of my blogs, but I just can not. And I have several book projects piling up.

Folks, my body is worn out and tired. Even what pride I have left (and there is plenty left... I am always going to be working on that)...

anyway...

My body is not cooperating.

Over the past three years, I have been backsliding time and time again. I am now reduced to having a window of three to four hours out of my day in which I am "functioning" well. And some times those hours are not even consecutive.

The depression has lifted significantly, but maybe that is due in large part to the fact that I am accepting reality. I have to learn to live within the limitations of this body until the time comes when this body, mind and spirit are able to heal fully.

I have set my priorities firmly.

So I will be slowing down. Actually, I already have. Any of you who read this blog regularly know that.

I just thought I would take the time to tell people why.

At this point on my healing journey, I am couched (or stuck in bed) a good deal of the time. My husband has paved the road so that I can stay connected to my online buddies. He gave me a laptop computer with wireless internet connection so I can be online from bed.

So you'll never know when you're getting a "yoohoo" from me while I am scrunched up under the covers!

And regarding the blogging and cartooning... I am grateful for every moment I have placed into this work. And I am going to keep writing and drawing. But, I just wanted to let everyone know that because I have slowed down, I am thoroughly ENJOYING the whole thing. I get so much happiness when I complete an entry or a comic strip. And when I hear back from people... it means the world to me.

And... in the words of the great Forrest Gump...

That's all I have to say about that.

copyright 2007 Loretta Kelly, MSW

#170 - Housecleaning & Disability: Part 2

Here is the first of several house cleaning and disability tips provided by readers.

My Fibro Space shares her experience with moving and organizing her home while being challenged with FMS, CFS, shingles and Depression.

Thank you so much!!!

(Content edited, full response available at Life Beyond Lupus @ MySpace )


"OK, so I moved. It's all like a dream now.

I live in a manufactured home and we thought it would be so easy to move, plus it is too new to sell, and very cute.

It turned out to be so hard. But I thought, 'Have wheels. Will travel.'

Easy as pie, right?

NO!

They still make you pack it up and move it out.

Also, battling with FMS, CFS, recovering from shingles and major depression ... added to the difficulty.

SO, this is basically what we did.

Start with one room bulldozing our way through and asked ourselves if we used it, needed it, or if it was something we truly loved and made us happy. Think about all the gifts you keep because a loved one gave it to you. If you don't like it but hang on then think about how it might bless some one else who would truly love to have it.

I gave much of what we had away.

I went through towels, and kitchen gadgets and through a ton of catalogs and through paper junk away.

I boxed up my daughters things but she did very well blessing others with stuff.

We took lots of loads to St. Vincent De Paul's, Good Will, to a friend purchasing a larger home or to the junk yard if it was that bad.

Again, I don't know how I did it.

I did take lots and lots of naps in between and pain meds.

I also tried to eat right and get good sleep.

... Today, I try to have a space for everything and storage.

I can roll down the roll top desk and close the entertainment center and that helps. I have a lovely antique glass bowl on a table by the door and I am training my husband to put his keys, wallets, etc. in there.

I also have a basket next to his chair for his books, and notebooks, ad newspapers. On the other side of the chair is a large basket lined with a trash bag for his trash.

Then I have an order.

Living room cleaned first, kitchen second, guest bathroom 3rd, close all other doors. If someone comes by at least something is clean.

Now when to dust and do laundry and actually put clean clothes away.

I haven't figured that out yet.

I have the opportunity to stay home and not work outside the home. I am a 'Domestic Engineer'. SO I do about 15 min of work and rest, 15 more min of work then rest and 2 naps a day."

#169 - Lupus Awareness Month

Free graphic. Spread the word.

:)

IMAGE CODE:

[IMG]http://img.photobucket.com/albums/v613/WINGA/LIFE%20BEYOND%20LUPUS%20website/lupusawarenessmonth.jpg[/IMG]