It’s Complicated And Complex 

Someone once told me, what controls your mind will then control your body.  This statement was offered to me when I was having a high lupus day.  You know, one of the days where lupus flares are stronger than you are.  I remeber I was struggling to get myself to my car so I could go home and this well meaning person offered me that statement.  

Now I don’t know about you friends, but when I’m feeling poorly, the last thing I am is understanding or likely to edit my responses.  So when this gem of a statement was offered up, along with a cheerful smile, I just shook my head at the silliness of the statement.  I mean positive thoughts will not overcome the pain, swelling and exhaustion of a lupus flare.  Trust me, I know.  And trust me, if this concept worked, every lupus warrior, every patient with any issue would get on board with positive thoughts and end up cured.

I’m sure this was a well meaning person thought these were helpful words.  How could anyone who doesn’t have lupus possibly understand that not only do I feel so much pain and exhaustion,  it I also feel a sense of failure.  As in I’m a failure for being sick, for having this flare.  And this is also tinged with a touch of guilt at not pulling my own weight.  But yes of course, if I think positive thoughts all will be better, everything will go away.

Now yes not dwelling in negative emotions for long is healthy and good.  But what’s really good is being able to deal with all the emotions that come with a chronic illness.  Realizing that yes soemtimes guilt, fear, failure and sadness come with the illness.  But they aren’t the whole of illness.  It’s complex and complicated, just like the illness itself, so please do not assume something as simple as positive thoughts will take care of it all.


Memphis Got

I didn’t get to Memphis.  I meant to go,  but I got side tracked and lost track of my path and when I picked the path back up again I had forgotten about going to Memphis.  Instead I ended up in Sedona, not wondering why I was there, but not sure what I could do there either.  It was like I opened my eyes and there I was, in Sedona wondering what to do with myself.

I suppose I could have gone back to Memphis, but something else caught my eye and off I went.  Memphis was simply going to have to wait.  A few times over as I ended up in Paris after that and spent a glorious month in Provance after Paris. Then it was Rome followed by the Loch Ness.  

Sure Memphis will be there, other than if there is a major disaster or such.  So I just always put it to the back of my mind and carried on being carried along.  And then one day Beloved said something about going where ones heart will go.  And he handed me plane tickets to Memphis.  Two tickets.  Even though he had no desire to go to Memphis.  He answered the question in my eyes by saying that love has you following someone you love that much.

So that’s how we got to Memphis,even though I can’t say that by the time we got there, I could even remeber why I needed or wanted to go to Memphis.  But we enjoyed the time, each other and Memphis.

Watching Tower

I’ve wondered often what it would be like to have a watch tower.  I’ve wondered if I would use it, and come to the conclusion I probably would.  But not for the intended purpose.  Instead I’d use it to look at all my dirt, marvel at the ever changing sky.  Probably take too many blurry pictures and if it were comfortable, I’d probably perch up there and read.

  I’m truly grateful that I have no need for the true purpose of a watch tower.  I’m grateful that I have peace, no people coming to conquer my land or take my home.  I cannot imagine living with such discord and threat right upon ones doorstep.  And yes I know people face this every day.  And yes I know a watch tower isn’t always the answer.

And what’s far more likely to be my undoing and road to destruction will no doubt come from something small and innocent looking.  Or at my own hand.  Or through my lack of knowledge etc.

Still I’ve often wondered about having one of those towers.  Just to escape from the hustle and bustle, enjoy a different pace and change of view.  Get a new different perspective of things.  Maybe feel a bit closer to the great mysteries and a little less connected to the mundane parts of life.  

Risking It 

A wise person once told me that you can basically risk assess anything from big decisions to the little day to day things in life. And there are times that I can see I’ve informally assessed risks, such as large purchases, packing up and heading some place new and so on. You may even say that to a degree I did the same with Beloved.
But how on earth does one risk assess chronic illness? You can’t. Not really. What you can do though, as a chronically ill person, is to assess the risk or the cost of doing something. Such as walking the dog on a hot, sunny day. The risks for me are sun exposure, over doing it, and of course not being able to keep up with the dog. 
So how do I manage the risks? For sun exposure, I wear long sleeves and a hat. For added protection I slather on sun screen. I even tend to walk the dog on the shady side of the street. If I don’t do this, I risk making my lupus stronger, which means it’s more likely to cause harm.
Not being able to keep up with the dog will lead to an unhappy dog and a less than pleasant walk. So again, I have to asses how far I can go, how I feel as I go and how to convince the four-footed one it’s time to turn back. You get the picture.
This is something I do on a fairly regular basis when I look at what I may or may not do. But I’d rather not do it. There is something to be said for living in the spur of the moment. And that just doesn’t happen often when you have a chronic illness like lupus. Even if you never wanted to manage risks or costs, even if you were horrible with budgets, you still end up doing this when you have a chronic illness.  
Oh sure some of you will be brave and say you’ve just thrown caution into the wind. I know. I’ve been there and I’ve done it and had the hospital stay to prove it as well. And it’s not really a stay one wants to repeat so once you’ve done that one time, you tend to wise up a bit on that.

Bees Knees

I encountered a man who walks bees every day.  Yes you read that right.  He takes bees, very large ones, for walks.  He gets them from his hive, puts a leash of some sort around them and he goes for a walk.  The bee flies near him due to the leash. And when the walk is done, he returns the bee to the hive and gets another one.  Strange behavior indeed.   But to each his own.

When I asked the man about his habit, he said the bees were near and dear to him.  He wanted them to be out and about, but he didn’t want to lose any of them.  Other than that, he seemed to think this was as natural as walking a dog.  And just because I had never seen this before, who’s to say it isn’t normal.  Especially as I was in a strange country.  And when in a new place, one should go with the flow.  

Of course there are other colorful things here too.  Such as screaming primates, well they don’t really scream, but it sounds close to it.  And bugs.  Big bugs.  Big bugs everywhere.  The kind of bug a girl doesn’t want to meet in a dark alley, or her shower.  Bugs large enough you’d need a huge book to squish it.

I don’t ask about the bugs either.  I simply accept the fact that we have large bugs here.  And if I leave them alone, as in give them plenty of space, surely they will live me alone too.  Right?  

Who Knows What Happens In The Mind

The four-footed one took Beloved on an outing.  It was supposed to be a walk, at least that’s what Beloved thought when they started out.  As for the four-footed one, well, she may have always had other plans!  Who know?  She is saying and I’m not asking.

I’m sure Beloved thought the walk would be a half hour, may an hour as the most.  Two hours slipped by and then three hours slipped by before they came home.  Her happy and tired and Beloved, well bedraggled and wet footed.  He was not happy, nor amused.  And he wasn’t afraid to give voice to his concern about what I may have done to the dog.

I assume that he thought the dog and I conspired against him.  As if I have time for that, or even leverage to get her to do what I want.  He just doesn’t get it.  When the four-footed one has it in her mind to go rambling or exploring there is no way to change her mind,  never mind that she is smaller than either one of us.  She has her own means of getting what she wants without using force.  Unless you count the force of her charming personality, huge puppy eyes or the force of her love.

Smarty No Pants

The four-footed one is probably smarter than I am. Well there is no probably about it, she is. She’s figured out how to get what she wants without using words, or even politics. She did not flash money at me nor did she attempt to woo me in any way. Oh no, this little bundle of fur, captured in paws and a wiggly tail did not do anything of the sort. And yet she has managed to get everything she wants with just a simple look or turn to her head. And even worse, she has trained me to anticipate what she wants. How is it that this wee creature has figured me out so quickly when I still am figuring me out as I go? How did she manage to make it all so easily fit together and twist it for what she needs? Is this a skill she was born with or is it that she has been a silent observer, watching me, learning and waiting for the right moment? It isn’t likely that she will ever spill her secret either. So I guess I will just have to see it as it is, she is smarter than I am at figuring out the people in her life and how to set things up to benefit herself. Oh well, pretty sure Beloved and I are tied for who’s next in line!  Well I’m sure  I’m just a bit ahead in this case, but don’t tell him.