A Pain In My Foot

Isn’t it amazing how the smallest of things can create the biggest issues for you?  A tiny fly gets near you and if you are like me you must treat it as though an entire flock of Pterodactyls  are buzzing at your head.  (For the record, I don’t know if Pterodactyls ever flew in flocks or anything of that nature.)

I had  the world’s tiniest speck of rock in my shoe, almost invisible is how I’d describe this rock in my shoe.  And although I walk with the four-footed one on an almost daily basis, I wouldn’t say I’m a serious walker so the rock would be an annoyance at best.

So I  ask you, dear friends, to help me understand how this tiny little even rock, this almost non-existent thing created a blister that covers the entire bottom of my foot?  It is surely one of the greatest mysteries of the universe.  Or as Beloved likes to say, something that could only ever happen to me and must be documented to prove it even happened.

I confess it’s a rather challenging place to have a blister as just standing makes the thing hurt, however if this is the extent of my silly wound I am sure I shall be fine.  Especially since suddenly people are wanting to do things for me to keep me from being on my foot!

Do You Scream Over Dropped Ice Cream?

Some days no matter what you do, you will drop your ice cream cone.  Sometimes it just cannot be helped, either because of weather or improperly prepared cones.  It is, as they say, just how the cookie crumbles or the ice cream drips and slips!

Today was one of those days where despite his best efforts, Beloved had his ice cream fall out of the cone and onto the ground.  He had to do a quick swipe to clean it up before the four-footed on came to help him.  When she cleans up it involves her tongue and it ends up in her tummy, even when it’s not good for her.  Unfortunately for us, when she does help the output of those results is the most unpleasant stuff you’ve ever encountered.  So we try to avoid those moments because a hose can only do so much!

Now Beloved dropped his favorite flavor ice cream which is just insult to the injury.  And it was a nice day, a warm day too so that didn’t help matters either.   So there is Beloved sitting there with an empty ice cream cone, his favorite flavor of ice cream now in the garbage and a nice day and he looks over at me and says “it’s only ice cream, somewhere someone has lost something far more serious and important.”  Because now and then Beloved puts it all into perspective, and because he saw that I had gotten him a refill of his ice cream!

Dancing In The…Kitchen

The soundtrack to the days of my misspent youth filled the air as I sliced and measured. The four-footed one danced back and forth near my feet.  It wasn’t so much the music that had her dancing as the hope of something good falling down to her level.  We had spent a few hours enjoying the music, the weather and creating in the kitchen when Beloved came in.

He wrinkled his brow at my taste in music and politely asked that I turn it down.  He mumbled something about aliens from the next galaxy being able to hear the music, but I promise you it really wasn’t that loud.  It’s more a case of Beloved and I enjoying different things including the type of music we enjoy.

Pits moments like these, when he comes home from something very serious and formal that I am reminded of the gap in our age as well as the different childhoods we had.  Where I associate the music of my misspent youth to innocence and fun, Beloved associates the same type of music to a more serious time in his life.  His early teenage years were jot spent visiting amusement parks, beaches and such.  Instead he worked to help bring home money or so he could eat more than one meal a day.

His memories, associated with this soundtrack are so different from mine, so filled with more serious and real issues.  Alas the music of his early years is stuff I have only ever heard on the radio that played “easy listening” stuff.  In other words the stuff my parent so out do site now on even though Beloved is nowhere near their age.

When he came back into the kitchen, looking less formal and adult, I turned off the music while he put on some swing music.  That way we could dance, sort of, together in the tiny kitchen while we finished pulling the meal together.   It’s our compromise, he that we do a million times over in the small space.  We turn off our individual soundtracks and found one that pleases both of us!

Souvenirs Of A Past Never Too Far Away or Scarred Memories

Sometimes, when he is concentrating on something, the scar that Beloved has just there seems more prominent and I want to run my finger across it, not to erase it because I rather like it, but to soothe it.

Beloved would tell you if it didn’t involve a great deal of needles, he’d have the scar removed, which would be a shame because then it would leave me with one less thing to day-dream about when he is a thousand miles a way. I used to wonder exactly how he got that scar, just there above the eyebrow like that. It took a lifetime before he’d even tell me what had happened so I used to dream up ways for it to have occurred.

He got it when he was under the age of ten. He and a group of friends climbed up to a roof of an old building and as the adage goes, what goes up must come down and so he did, falling all the way to the stone floor below. The fall resulted broken bones, open wounds and what a river of tears. It also meant ages in the hospital recovering and more than a few permanent reminders that he cannot fly.

Over the course of his life, Beloved has acquired additional memories in the form of scars and such. When he is in a good mood, he is more likely to tell the story behind those scars; some of the incidents are more incredible than I could ever come up with and others are far more mundane. He has a small, almost perfect circular scar on one of his feet and a huge jagged scar that reminds me of a lightening bolt on one of his upper arms. I’ve traced each one of them at some time or another as he told me how they came to be.

Perhaps it isn’t the scar so much as the memory it ties him to that makes him want to have it removed. Beloved doesn’t talk much about his childhood and I suspect he has decided it neatly into the “good” things and the “bad” things that happened as he was growing up. A sister once told me that after the accident there seemed to be more “bad” tBhangra “good” in the family household.

I know that even if he were to have the scar removed, the memory all the baggage that comes with it, would still be there. And that’s a pain that time cannot fully erase, just as my finger cannot fully soothe the scar.

Moments or Marks

Someone once told me that he felt life was made up of a few moments here and there with a lot of stuff just filling in the space between moments.  I never liked that idea, to me it seemed a bit to like a waste, especially knowing how he defined moments:  births, deaths, weddings, divorces, graduation, and retirement.  Our faces carry the marks of those moments.

If that is the sum of your life, just after moments here and there and the rest just waiting for the next moment count me out.  Or rather let me count my life in different ways than just those moments.  It isn’t that I don’t have those moments, for I’ve had my heart stop in terror and pure peace.  I’ve had my heart race with excitement and fear; yes I know that those moments are vivid in my mind.  But I am constantly reminded that there is more in my life than just those moments, that each moment no matter how simple it may be counts.

Beloved’s call reminded me again today about the importance of cherishing ever moment, even if it is just sitting and listening to the birds.  Not every moment need some of be huge to be special.

Beloved had a friend, we shall call him Mark, who frequently spends time in areas of unrest.  It is part of Mark’s job and while it is exciting for him, as he has gotten older he has come to be more aware of the dangers or perhaps his own mortality, so the past while whenever Mark goes away he sends set check-in times for his friends.  (Both of Mark’s parents died before he turned ten and he is an only child so friends have become his family.)

The most recent check-in for Beloved and Mark was two days ago.  From talking to others who also have these check-ins, it became apparent that Mark has been unable to make any of the last three days.  Given the area Mark is in, this is cause for major concern, so the friends all agreed it was time to call Mark’s employer and report him as missing.  (In case you are wondering, yes this is one of those moments.)

It turns out Mark’s employer had already filed the necessary paperwork as he had missed an earlier phone call with them.  Of course an adult is free to “disappear” if he wishes, but this doesn’t feel that way.  If feels like my heart needs to speed up and slow down all at once.  Every phone call, every email now has weight attached to it, weight that settles heavily upon us until we hear what the caller has to say or read that the email isn’t related to Mark.  We are hoping this becomes one of those moments we remember without intense joy and relief, but already I can see the weight of things settling into lines on Beloved’s face.  For now we will have moments of supporting each other and cherishing each other just a little more.

Attitude, Belief, Lupus and Me

Over the course of my life I have heard that my attitude makes all the difference.  When I used to hear this kind of stuff I’d chalk it up to my parents or some other authority figure trying to control me in a way I didn’t want to be controlled.

When I got a little older I took some courses in psychology where I was taught that you can trick yourself into believing things that aren’t actual facts yet, at least when it comes to yourself.  For example if you dont feel confident but you keep telling yourself you are a confident person and pointing out the things you did accomplish with confidence, well you’d wind up believing in yourself when it comes to confidence.

So I would try these little tricks of the kind when I was feeling the effects of a flare.  I’d tell myself I did have the energy for a shower and getting dressed and my follow thigh would happen even if it was a huge struggle.  And I’d basically carry on with whole day by breaking it up into little bits.  Sure there were some things that became too much to do, but I would wind up the day by feeling really pleased with myself and all I had accomplished.  I’d even feel proud when other people marvelled at how I pushed myself on despite being in a flare because I was in charge not my illness.

Here’s the rub though, I never enjoyed any of the time I spent pushing myself so hard.  In fact I barely remember most of what I  did and why I had to do it at that time.  I just remember it felt like I was pulling myself through thick mud and there wasn’t a helping hand in sight.  The reality is there were tons of helping hands, most of them trying to pull me out of the mud to rest when I had expected them to get into the mud and push me through.  Truth be told, there was no real need to push myself so hard because the only person I had to prove anything to was myself.  What I should have been doing was being more compassionate towards myself, caring a bit more about my health and less about how I could push through and beyond what some of my health coworker’s were doing.

As a result, my disease would flare horribly out of control and end up doing permanent harm to myself.  Which I would then shrug off as I pushed through something else.  It was a pretty regular routine in my part, until recently.  You see I acquired a new member of my medical team and he put it to me like this:  “why should I bother to put in time and effort to keep you alive and healthy if you won’t put in the same for yourself ?”  He also told me that all my accomplishments in my personal life and my work life wouldn’t mean much if I ended up stuck in a hospital.

What I had realized was this man had listened to me talk with other lupus patients about the importance of rest and self-care while I refused to do the same for me.  He wondered why I disliked myself so much that I saw no value in me as a person.  And he voiced all of this and much more during one of my appointments.  It’s not that I dislike myself or devalue myself (although I am my own worst critic), it’s that I felt that if I could push back at lupus id win the battle. I have since tried to shoe myself the same compassion and understanding I share with others who have a chronic illness and I must say it is a huge relief to not have to do more than I feel I can do.  It’s nice to accept that some days having a shower and getting dressed is a huge accomplishment and that is perfectly fine.  The only thing that has changed, and it’s such a small change with such a huge impact is that I’m allowing myself to be a woman who sometimes must stay within certain limitations, but those limitations do not reflect on my impact.

Learning To Appreciate The Slow Dance

A friend was venting her frustration at having to slow down as she is getting older because things change. She missed being up all night and still being fresh and on her game for an early morning meeting. She was quick to point out that she could still pull off the early morning meetings after being up all night, but she would be doing so at a cost of being more drained later on in the day.

I completely understand, for I too have had to come to adjustments and realizations that how I used to do things can no longer be replicated exactly. However unlike my friend, I had to come to those realizations much earlier in life thanks to lupus providing me with a huge reality check. Sometimes you just have to find another way to get things done. And if you can’t find that other way, you find out the cost benefit of doing certain things and weigh out your options more closely.

My father once described me as a human version of the Tasmanian Devil because I was always into something on going somewhere, typically with my hair on fire as I raced towards whatever held my attention. My mother referred to me as a butterfly, flitting one place to the next, resting for short periods of time before throwing myself into activity once again.

Lupus made itself known, although not by name, through a series of events which resulted in my forced slowing down. Or rather I slowed down because I wasn’t sure what was wrong with me, but once we knew what it was the doctors would surely cure it and get me back to my usual self. Only once we knew we were dealing with lupus I was sure we’d be on the path to fixing it.

Except lupus, like other chronic illnesses cannot be fixed. It can be managed, the symptoms can be masked and controlled, but once you have it, you will always have it. It’s like the side-kick or constant companion you didn’t ask for or necessarily want, but you have now. And lupus, like other chronic illnesses, does not sit in the shadows or the corners just because the symptoms are being controlled. Lupus must flex muscle now and then and remind you that your life is now a life lived with a constant companion.

Being a bit stubborn, I was pretty confident in my early days of getting to know lupus, that I would be able to carry on as normal, keep up my pace of things and lupus would just sort of fit in with everything else. Lupus laughed at me; the kind of laugh that makes your abs hurt from how hard you are laughing as you wipe tears from your eyes. Lupus taught me that I’m far more creative than I thought I would be; I can budget like a pro. Lupus also taught me that you can’t always get ahead of change, you won’t always like the changes you must deal with, but if you can and will find a way to get done what is most important. You will just do things differently at times, and that is perfectly acceptable.