worry

July 9, 2022

Chaos For Mellow

While having a coffee out with a friend, she said that her life had become more chaotic instead of mellowing with age. She pointed out the chaos resulting from her stepson coming to live with his dad and her. It isn’t that my friend was unaware of the stepson. However, he had never lived with his father until now.

You see, his mother could no longer manage him. He was 17, strong, autistic, and getting very violent. So naturally, his mother was concerned about her safety and that of her other children. The smaller children had been identified as a possible trigger for his anger.

And so it was that my friend suddenly had a 17-year-old boy in the house. A 17-year-old who happens to need to have the tv on at the same time he has music on. Both are being played at loud volumes at all hours because apparently, sleep isn’t something her stepson needs a lot of.

My friend said she and her husband were exhausted and concerned about the number of violent outbursts they had already witnessed. Unfortunately, it seems the answers for dealing with his violence included calling authorities to have him hospitalized and trying to figure out what triggered the outrage. My friend said that everyone is worried about what will happen to the son when he’s an adult or when his parents are no longer there for him.

She said when she’s not dealing with her stepson’s chaos, she’s dealing with the chaos of worrying about him.

March 31, 2018

What I Saw

Over the years I have had my palms read, my aura read and my tea leaves read. Today I had my coffee grounds read.  Yeah who knew this even existed, certainly not me.

The idea is you make a pot of coffee with grounds thrown into the bottom and of course when your pour it out, grounds end up in the bottom of your cup.  After you’ve consumed your drink the grounds stay there and a trained reader can educate you about your future.

I can tell you that this reading was much like all the other ones I’ve had, a lot of vague references about the future which can be interpreted in several different ways.  That way the reading is surely accurate, you see events unfold in a manner that is self-serving.  Or at least in keeping with the reading.

Regardless the idea that anything can offer us a glint of hope for the future or maybe just a small slice of what the future may hold is always fascinating.  Not because it will show the future, rather because it touched deep within our subconscious and laying bare our hopes, dreams, fears and such.  In other words it says more about us than the skill of the reader.  And in my case the vague statements revealed to me my anxiety, excitement and  concern about what the future may hold for career, health and general life.  I didn’t need a reading to know that, but it was intriguing all the same.

 

March 11, 2016

When It’s Your Chronic Illness, or Curiousity Of Affects On The Well

I often wonder about the people in my life who care about me.  My parents kept their feelings pretty much to themselves when  shared my lupus diagnosis with them.  I do know my father had a few sleepless nights worrying about this unknown thing now in his daughter’s life.  My mother suddenly started reading everything she could about the illness.

Some friends were also immersing themselves in literature.  A few attended awareness sessions and others decided to just carry on with life as normal.  And I’ve been grateful for everything that everyone has done, said or been here for me.  It’s been amazing.

But I worry about how my illness has impacted them, how it’s affected them.  Beloved once told me that the hardest thing for him was knowing he couldn’t do a thing for me and he couldn’t even fully understand what I go through when lupus is flaring.

My second mom has never told me how this impacts her, but I’ve seen things in her eyes that  wish I didn’t see.  I’ve caught hesitation in my friends.  Reluctance at times.

The truth is when you have a chronic illness, unless you happen to be a hermit or live on a deserted island, your illness isn’t just impacting you.  It affects friends, family, and to some degree coworkers.

Have any of you reached out to those who do not have the illness, but rather care for someone who does?  What do we do for these amazing people?

January 21, 2016

So Very Tired

Friends I am tired.  So very tired.  This isn’t the type of tired that is remedied by going to bed early.  This tired has settled deep inside my very bones and now I’m weary.

I am drained, empty and without any energy.  This is beyond your gas gauge on E and hoping you have just enough fuel to get to the station.  This kind of lack of energy can’t be recharged with sugar, good food or exercise.

I’m no able to shift my mind  to anything beyond the levels of pain I’m experiencing.  Where as before I could distract myself and get lost in my work or reading now I can barely function with this pain.

These days I drag this worn out, exhausted body while I try to ignore the screams of pain  that seem to come from every cell.  And I don’t want to do it any more.  I suppose that’s an awful thing to say.  And it isn’t as though I have a death wish or no desire for life.  But I’m tired right now.  So utterly tired of losing ground to lupus.

I didn’t sign up for the seemingly one-sided dance that has me losing three steps for every one I make.  This is the side of lupus I try to keep hidden from everyone.  This is the side I downplay about my life with lupus when people ask me how things are.  But some times holding onto a secret is much harder and more work than I can explain.  And sometimes being polite, and understating things to protect friends and loved ones just isn’t healthy.

And I know, in a few days, my relationship with lupus will settle into something more manageable again.  But right now I’m just tired of trying to pretty up what my life with lupus is like for my public.

August 23, 2015

Best Gifts For Getting Well

In my life, over all my illnesses and hospital stays as well as bad news, I’ve received a variety of care packages or get well gifts.  Some times they come in the form of colourful, fragment flowers either cut and artfully arranged or potted to last for more lasting effects.  Some times they come in a form of baked goods, books or comfort items.

The gifts vary as wildly as the people who give them to me.  I’ve had homemade chicken noodle soup presented in a chicken mug from a friend who found her way to rural living.  I’ve had a fuzzy knitted blanket from a friend who discovered knitting calmed him down after a crazy day at the office.  Home made, hot chocolate kits in mason jars got me through a winter of pain and stiffness.

Worry dolls that are designed to slip under my pillow and take on my worries joined me for a week-long visit to a hospital in a strange land.  In the end I think the doctor needed those worry dolls far more than I did.😉

And my last bout of debating if I’d be spending far too much time with people in white was spent with a colouring book.  Yep a coloring book.  One for adults.  I never even knew about these before!

Now I’ve been assured there is something calming and zen like with a coloring book.  I do recall coloring as a child, in a book sometimes and other times on sheets of paper.  I’m sure ere were times that I enjoyed coloring as a child, it may have even soothed me some.  But coloring as an adult is a whole different game.  Rather than being stress-free I found myself stressing out over colors and lines from coloring.   How much shading should be used and where does one begin?

I’m going to need my worry dolls to make the coloring stress-free at this rate!  😉

If I’m asked what the best gift is I don’t even have to stop and think about what all I’ve received.  Because it is the gift of care, love, concern and relationships that are te best things in life, sick or otherwise!

October 10, 2014

When It Is Lupus

A television show made my chronic illness a name/word that people recognized. That same television show had a running joke of my illness. It’s all fun and games until…well, until it is Lupus. Then the fun stops, the laughter kind of ends and the getting serious gets serious.

The reality of Lupus is similar to a civil war. My body is attacking itself. The good guys can’t seem to wait for the bad guys to show up, instead they are itching for a fight and choose an organ or such to attack. And the thing is, since it’s really me attacking myself, the only damage is to me.

The thing about a civil war is that by the end of it, you really know the land, the layout that you’ve been fighting on and for. And that’s one of the things Lupus has done for me, made me very aware and familiar with, well, me.

The problem with war, any type of war, is that a “win” comes at a huge price. A price that people sometimes are forced to pay; a price people don’t ever expect to really have to pay.

To be honest here, I’m not exactly sure what a “win” is when you live with Lupus. I think it’s more a compromise with some things sacrificed.

Lupus isn’t “trendy” or “sexy”. The people who have Lupus, those remarkable folks, can make it seem that way sometimes. But it isn’t all horrors and nightmares either.

It’s just another challenge, a constant companion in my journey of life. That doesn’t time an I downplay it, well okay since we are being frank, I do tend to downplay it for friends, family, loved ones. To spare them, to spare myself too because I’m not just Lupus. I happen to be a girl, who happens to have Lupus.