Life

May 17, 2017

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.

April 27, 2017

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.

April 22, 2017

Dying Of Embarassment On The Road To Hell’s Intentions

The road to hell is paved with good intentions, or so they say. I’ve personally never been on the road to hell, not even the one in Michigan so I can’t say for sure what the pavement is made of or even what it’s like.

Of course people also say they about died from embarrassment and I can assure you, I’ve been more than a tad embarrassed and never actually died from it. I may have wanted to die, or at least have the earth open up a hole to I could fall into it and then have the earth just close back over again.

I had intended to walk the entire distance of the path today. I knew I wanted to walk it the minute my friend told me about its existence. Taking a page from Beloved’s book, I started to check the forecast to ensure I would have optimum weather for the day I went down the path. Today, according to the weather experts, was supposed to be the most ideal day of the week for the trip.

With a soft, warm glow to the morning sky, I made my way to the entrance of the park where the path begins. I brought with me just a light sweater to deal with the early morning coolness; I packed water and made sure I was wearing my walking shoes. I stuck my phone in my pocket and chose to listen to the birds singing in the distance as I started down the path. It was, in fact, a very peaceful and relaxing atmosphere.

Not even halfway down the path the sun dipped behind a cloud and the wind picked up a bit. I was grateful to have brought my sweater with me. To be honest I was feeling a bit smug about remembering to bring my sweater. The problem with feeling smug is that there is always something to bring you back to your humble senses. In my case it was an incredible downpour. From out of nowhere or so it seemed.

In less than a minute I was soaked and cold, no longer interested in walking the rest of the way. I just wanted to go home, get dried off and warm up with a nice drink. Naturally I turned to head back the way I came. And just as naturally my good walking shoes found a nice muddy puddle to go into. It was the kind of puddle that resulted in muddy water going more than half the way up my legs. And the rain didn’t seem to be doing a good job of removing the mud from my pants or shoes.

As luck would have it, or at least as luck goes in my world, when I got to where I parked, the sun was back out and shining as if nothing had happened. Except I was soaked, filthy and cold and there were more people in the parking lot preparing to go for a walk in their nice clean clothes, suitable footwear and water-repellent coats in hand.

No the earth did not open up to swallow me, I was probably too dirty. And yes I did want to die or at least hide right then especially because where I had parked meant I had to go past everyone looking like a disheveled drowned rat with squishy shoes.

April 17, 2017

In The Cards or Reminders For Living

she turned over the cards, the first one was to give me an answer for what I should be doing for my greatest good.  She said that it was important to find the greatest good, which she quickly pointed out did not mean greatest wealth.

The second card was provide further information and the third card was to answer if there was anything else I should be aware of.  Once she read the cards, she looked up at me and told me that there was great things to come out of the chaos currently happening in my life.  I needed to remain open to possibilities and finally I needed to remember not to be too cautious.

she wasn’t wrong, there is chaos in my life, but basically that’s life in a nutshell.  And yes if you remain positive and look for the good positive things will come from it.  In order to remain positive you need to be open to new opportunities and take risks.  Not taking risks results in not changing or finding new opportunities,

she did not provide the same type of reading for my friend which was interesting.  But the reading she gave my friend was also vague and yet incredibly applicable for my friend’s situation according to my friend herself.  Because we take these messages to mean what we want them to mean.  We take the vague statements and see how they apply ourselves and either  accept them or discard them.

I won’t be discarding what the woman at the coffee shop shared with me free of charge because it is important to remain open to possibilities, to be able to find the positives in life and take the risks worth taking.  I won’t, however, see what else she can read because things will unfold as they will, adventure by adventure.

April 13, 2017

A Landfall Of Lemons or Lemonade Lupus Style

Some days are made for lemonade. Or maybe it’s that some days you just keep getting handed lemons no matter where you turn. If you are like me, you have to do something with the lemons, so a quick fix is to make lemonade.

These past few weeks I have made more than my fair share of lemonade or so it seems. I have made lemonade to be consumed immediately. I have made lemonade to be frozen and still friends I have lemons left over. The fact of the matter is, if I’m not careful, lemonade may soon be flowing from the taps in the house.

Now I suppose I could simply stop making the lemonade and try to toss the lemons back to the universe, but I wasn’t raised that way. And to be honest I hate to throw something that might in fact turn out to be a gift away before I realize what I really happen to have. You never know when you may be handed a lucky lemon after all. (Not that I have ever been given one, and for the record, not that I’m even certain said thing really exists, but it’s the thought right?)

So I sit here with yet another day’s collection of lemons, no desire to make more lemonade or let the lemons go to waste and I decide to take the bitterness and/or sourness that the universe has provided to me and turn it into something different, but still sweet. Baked lemon donuts are now on the menu, as are lemon-blueberry muffins and very possibly a lemon tart or pie. If enough free lemons come my way I may just be able to start a lemon business!

Of course if those lemons were purple then I’d be onto something different, my lemonade from lupus side of things. The fact that a lot of the newly given lemons are related to my lupus is just part of the package when it comes to lupus. The trick is to find ways to use what you are given, or have taken away in some cases, to reinvent into something new or positive. So while right now things aren’t really great, I will smile and chat with you over some lovely lemonade and lemon baked goods. Whenever you need to stop by, I’m pretty sure I can either whip something up or pull something out of the freezer, so don’t be a stranger. And remember out of ever bitter lemon comes the opportunity for something sweet and wonderful.

April 12, 2017

He Loved Her

He loved her so much that he couldn’t stand the thought of being away from her. His love meant that he had to know what her schedule for every moment of the day although he didn’t feel that he needed to share his schedule with her. His love made him entitled to know who she was spending her time with, this included knowing her co-workers. Because he loved her so much he wanted to make sure she wasn’t being influenced by negative or “bad” people. This love of his let him pick who she should spend time with just as it let him show her that her own friends weren’t good for her.

He loved her so much that he would do anything to prevent her from making a mistake. This included him using his fists upon her body as a means of a deterrent. He always, but always, said he was sorry afterwards. He was sorry that she didn’t or couldn’t listen to him when he knew what was best for her. He was so sorry that she forced him to go to extreme lengths to keep her safe. His love caused him to hurt himself at times by hurting her. The physical beating she took was surely not nearly as painful as the internal pain he went through when he was forced, by love, to beat her into submission.

He loved her so much that he couldn’t stand the thought of her having a life without him. And it was the act of ultimate love when he shot her or stabbed her to death. And this love surely is what drove him to then take his own life too, for what would his life be like without the love of his life in it? Or so that’s how the story goes.

The reality is no matter how you try to pretty it up, not even the best make-up artist or stylist can hide the horror of domestic violence. And if you think it the same scenario as above couldn’t be altered that the abuser was a female you’d be sadly mistaken. Domestic abuse comes in many different forms and it isn’t always obvious to see what happens behind closed doors or drawn shades.

It’s hard to explain why people stay with their abusers. Love is part of it for some. Just as fear is a factor for others. Sometimes your abuser does an excellent job of telling you things in such a way that you cannot help but believe what s/he says to be true. Some may believe they deserve exactly what they are receiving. For some, at the drawn out end, the death is just a matter of when or by what means it will be carried out.

It’s a sad day my friends when the newscasters can tell us of these murder-suicides before handing it over to the weather person or breaking for a commercial and none of us are fazed by this; nothing more than an unfortunate yet somewhat routine story. But at least he loved her enough to love her to death right?

April 11, 2017

Discoveries And Lessons From A Natural Teacher

A most wonderful discovery has happened in my very own yard.  A discovery, dear friends, that is beyond amazing.  You may want to sit down for this, unless you are the type of person who takes exciting news standing up.  (I really need to work on getting to know you better so I can address things accordingly.  I promise to work on this in the future.)

Anyway back to my news which is basically worthy of television crews and what have you being present.  I mean it is earth shattering, or at least mud cracking news.  The kind of news that makes you stop and smile.

You see the most fantastic thing which was discovered in my yard today just happened to be beautiful tiny purple flowers coming from a plant I thought wouldn’t survive.  You see this plant had to deal with my black thumb, and my four-footed companion who just happens to enjoy using the plant as a resting spot and a chew toy.  I had honestly thought that after the greenery came up and the four-footed one started her routine of sitting, sleeping and chewing on the plant that all was lost.

Nature, however has a way of surprising us and showing us that despite obstacles we can still come through to see our vision or dream come to fruition.  Hope is never lost until we decide to lose it.

There are lessons in my discovery; for some of us that may be that no matter how delicate or fragile we think we are, we are strong enough to face this world. For others of us it is a lesson of perseverance and never giving up even when others give up on us.    Still others will find a lesson in the power and awe of nature.  For me it is a reminder that no matter how hard things are, no matter how tough lupus makes my life, there are still amazing things to come.