A Delightful Surprise 

Have you ever spent time planning what you were going to have when you knew you’d be going to a restaurant?  We had made plans to go to a lace a week ago.  I checked the menus and pictures of the food.  I read reviews and took my time really reading the menu.  I had ideas of what I would eat.  

And when we got to the restaurant, I was feeling confident.  I knew what I was having.  Except the menu they gave us was not at all like the one online.  All my planning was for not.  So I was still left with that feeling of not being sure exactly eat I would have.  No pictures, no reviews.  Just go wth your gut and hope it’s all good.

The food was wonderful and to be honest I’m glad the menu was different.  I know that sounds silly , but by the time I was going to order based on what I made up my mind to have before, I was kind of blasé about it.  This was such a delightful surprise.

Not that I’m always thrilled with these types of surprises.  I mean there are times that I’ve really wanted something and planned for it only to be told it wasn’t available.  It’s a bit crushing to be honest.  I know, we are talking about food, but sometimes you can taste it long before you get it.  And when it’s suddenly not there when you really want, it’s rather hard to accept.


Space To Be With Lupus

My mother used to tell me that if you can’t anything nice about something or someone, you shouldn’t say anything at all. My father used to say that if you can’t behave properly in public, you shouldn’t be in public until you get a handle on your behavior.

My friends told me that there is no reason to be angry or to bounce off the walls. Beloved told me that it’s okay to be angry and to bounce off the walls when you have to deal with the ghosts of a dream from way back. He would also tell me that the pain sort of disappears and everything is kind of like a scene rather than the whole earth shattering life.

The thing is, I can’t always say nice things about lupus. Oh I’ve tried. And I’ve tried to found the positives that lupus has brought into my life, but sometimes I just can’t find the nice words. And I can’t behave properly because I’m tired of giving so much of myself or my dreams away.

Sometimes all I can do is look for the freedom and the space to be angry and loved. To bounce off the walls and to settle into a comfortable spot. And sometimes that seems impossible to find. Because friends don’t want to see you hurt or upset all the time. They want you happy and full of life.

No one wants to hear the tears of lost dreams, or the ghost of the girl I once was. Except Beloved. He listens. Sometimes he bounces off the walls with me. Sometimes he tilts at the windmills and other times he just finds a place to sink down into and hold me while I try to forget about that ghost of a girl.

Only A Fool Such As I

One of my specialists decided to have a rather frank chat with me about my lifestyle. Well actually after he was finished studying my purple fingers turn lovely red under hot water, he informed me that I should consider where I live more closely. He said something like only a fool with my issues would continue to live in a place where things are not stable as far as weather, barometric pressure and temperature go.

And he’s not exactly wrong.  I know this isn’t the ideal place for me under the terms of temperature and weather.  But it works for me in other ways and it’s not an easy call as to which benefits are better and which draw backs are worse.  If it were that easy than I’d wouldn’t have been dithering about things like where to live.

The other factor in this is what is ideal for me may be not allow me the access I need to health care. And then let’s not even discuss that what works best for me is somehow the worst things for Beloved.  I need heat and he struggles in that.  I like sun and apparently he almost a vampire.  He lives for the drastic changes in the weather and loves to see the distinctive seasons.  I could care less about that stuff.  I just want to feel, well, human these days.

Which brings me back to what my specialist was saying.  Only a fool would continue to allow herself to feel like such utter rubbish due to weather and temperature and know that each year it gets a bit harder. A smart person would head to a place that is more compatible and sort out the other issues as she could.  And I will get to that, once the pain subsides a bit.  I think.

Letting Go To Leap Freely

While faced with a rather large amount of work to do and really no strong motivation to get it done, I decided to take my laptop with me while I grabbed a coffee.  The logic was simple, if I could get a table in a relatively quiet corner, I’d attempt to get to the work.  It such a spot could not be had, my laptop and coffee would make the trip back home and I’d just have to plop myself into my den and get on with the working.

Thankfully I was able to settle into a nice corner with a vat of coffee, okay not really a vat, but a very large cup of coffee.  I set about getting on with the work that needed to be done while enjoying my coffee and letting the quiet noise act as very gentle background noise.  And work got done.  Not all of it, not when there were distractions to be had. Such as careless words tossed around and even more immature reactions to those careless words.

A couple of women had found a spot near me after I had been there for a half hour or so.  One was talking about how she was ready to make some big, life altering changes.  The other woman was trying to support her, but at the same time was pointing out some of what the first woman was saying happened to contradicting other things she had said.  The first woman said something about needing space to make her changes and the other woman said that sometimes the changes that need to be made do not require physical space, instead they require emotional space.   The first woman went back to needing to have her space, physically while at the same time insisting that the second woman be there to support her.

At some point, I had stopped listening to the back and forth of this stuff, the second woman said something about how this was the stuff of books. The first woman became very quiet and got up, heading to the washroom.  When she returned the second woman apologized if she had somehow upset the first woman.  And then all heck broke loose.

The first woman went on a tirade about how the second woman was supposed to support her, encourage her, protect her and such and yet by choosing to use the phrase “stuff of books” the second woman had proven she wasn’t going to do any of those things for the other woman.  After that, the first woman stomped out of the coffee shop. The second woman finished her drink and left quietly.

And I stopped working altogether.  I had been curious about what exactly the first woman had been trying to change in her life and equally curious bout how the second woman was supposed to do all these things for the first woman.  Was there a contract?  Did these two women not realize that I needed to know the rest?

After a few hours, when I was back home, I finished the work that needed doing and realized decided that because nothing happens in a vacuum, the changes one person makes will have repercussions that aren’t always easy to foresee.  And sometimes to make a major leap you need to let go of the safety rope and all those people who keep things safe.  Sometimes you need to just jump and see where it takes you.  Some people find this easier to do than others. And it seems the ones who struggle the most with this are the ones who end up making the most rules around things.

Just Getting Ready

Beloved was standing before the mirror, getting ready to head out for a presentation.  I sat back and watched him adjust his shirt, decide his beard was okay and run his fingers through his hair.  I’ve watched him do this a million times if I’ve seen him do it once. And each time he will look at himself from all sides, stick his tongue out and then mutter “it’ll do”.  At which point he flips off the light and leaves the room.

This time, as he was turning this way and that, I asked him if he was aware of what he was doing.  He gave me a shrug of his shoulders and said “you can’t undo years of whatever”.  Because he’s done it for so long, he can “remember” getting ready for all these events, even though he has no recollection of each actual moment.  He is, as we all are, a creature of habit.

Before he headed out of the door, I knew what would happen next.  He’d find the jacket, well actually he’d look in the closet, take a step back and see which jacket he felt like wearing.  He would shrug into it, grab his keys and since I was sitting on the bed, he’d come over and give me a kiss.  He’d glance at his watch, realize the time, and hurry down the hallway to where he left his shoes.  And of course there would be drama over finding the pair of shoes (one always goes missing on him) and before I’d know it, he’d shout out “bye and wait up for me if you can luv” and he’d pull the door shut, locking it.

If I got off the bed and followed him down the hall, he’d fuss that I should be resting.  We’ve done this so many times, the two of us, it’s like an old routine.  But sometimes I surprise him, like tonight.  I sipped his jacket on for him, gave him a kiss and went with him down the hall.  He found both shoes waiting for him, only because while he was grabbing a shower I grabbed his shoes.  And it was I who closed the door, after he left my sight.

Will he remember this event any differently because he had a different send off?  Probably not, but I will.  I will remember the way the way his blue eyes twinkled with surprise at me helping him. The way his eyebrows rose a he found both of his shoes waiting.  And I will remember the playful smile at the corners of his mouth when I told him to hurry home.


He finished cleaning up the small shards of glass while I sat down trying to figure out what I was going to do.  We were down to three glasses, five plates and three bowls.  Yeah I had a day of dropping stuff.  He never said anything as he cleaned up after me, he never said a word.

I was sitting there staring at the hands that betrayed me, thinking that if he had stocks in crockery we’d be good to go.  But he doesn’t.  Of course I was also wondering what else I would drop, break or destroy.  I was beginning to think I could change my name to the Queen of Carnage.  And at this rate, Beloved might just want to stay on his hands and his knees.

The fact is, there are days I can’t win for losing.  And breaking. And just basically lurching from one disaster to another. I’m not sure that he signed up for this.  Heaven knows I didn’t.  It’s not like I stood in a line up and asked for lupus, or all the fun things that come along with it.

Every time I think I have a handle on things, I drop it.  And every time, regardless of my anger, rage, frustration and disgust, he calmly comes in and cleans it up.  He is a kind man, this man who seems to spend a large part of his time cleaning up after me.  He will say things like, “I never liked that glass anyway”, or “it is getting time for new dishes, I was getting bored with these”.

Life with lupus, heck living with someone who has lupus, is a bit like a broken plate at times.  You can see how the pieces should go together.  You can even fit them back in place, but they are still damaged and unable to carry the weight they once did.  A small part of me wonders if at some point he won’t throw me out and keep the dishes! 🙂

Guilty As Charged

When I have to plead my case, when I am asked if I am guilty of: being late, missing appointments, leaving early, canceling at the last-minute and not pulling my own weight, I shall have to plead guilty as charged. I would like to say that while not fully responsible, lupus has certainly played a huge part my guilty charge.

There have been times, pre-lupus, that I have skipped out of commitments, but those were rare. And there were times when I know I shirked my responsibilities because it just seemed a good day to read. Again these were rare. Perhaps due to how rare they happened in the past I did not feel a crushing weight of guilt upon my shoulders like I do now.

Lupus has made me a less reliable, more of a maybe kind of girl. This isn’t all a bad thing though. You see sometimes in the past I would commit to something without knowing how much time and/or energy it would take. Sometimes I leaped and did not look until the very last second when I knew I’d crash hard into the ground.

Lupus forces me to consider the value of something now. Is going to do X worth the energy it will take? If I don’t do Y can I still do Z. And so on. In some ways lupus may have allowed me to say no or maybe more often. And because I am not used to it, I feel guilty.