Lessons Lupus Style

The four-footed one took Beloved on long adventure the other day.  He thought they’d walk a few blocks, and hour and a half later a somewhat bewildered Beloved and a happy, yet exhausted, four-footed one came home.  She strolled into the house, drank heartily from her water and found the ideal spot to rest.  Beloved stepped in, headed to fridge for a drink of something cool and a comfortable chair. That was until he looked at the clock.

Once he saw the clock, he changed direction, headed for a shower and a change of clothes before dashing off to work.  The four-footed one took care of his rest for him.  And I, well, I was still trying to clean up the dishes and such off the table.  It was, after all, a slow day.  Slow days used to drive me crazy, I mean I had things to do and lupus would slow me down, making me frustrated and angry.  It was as if lupus couldn’t respect that I had a life to live.

But on that day, I cleaned up and felt at peace with the slow pace, which I knew would last at least the day.  The slower pace meant stuff wouldn’t get done the way I’d want to, but it would also allow me to enjoy the four-footed one’s company and the more simple things.  It would also mean that I would be careful about what tasks I would accomplish and what ones would wait for either Beloved or another day.

You see lupus taught me that not everything has to be done right away.  The world won’t end because the laundry has to wait a day.  Your life won’t be over because you clean the house today, make a gourmet meal or complete a power deal.  It’s okay.  And lupus also taught me that you know what?  There will be time to get to those chores and what have you soon enough.

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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.

Nature’s Balm

The four-footed one and I had a nice amble today.  We had no specific destination nor any specific timeframe to adhere to so we took our time.  We watched clouds waltz ever so slowly yet gracefully across the sky.  We listened to the breeze as it made the tree stand way.  We watched in wonder at a crow with beautiful blue-black feathers as it determined the best way to open up a nut it had found.

Okay so maybe the four-footed didn’t do all those things, but while she was doing her thing I was doing mine.  For all I know she could have been plotting her getaway while I was shaking off the bad mood through nature.

The crow, for all I know, may have had worries and fears of its own, but it carried on with the situation at hand.  There is something to be said about letting things sort themselves while you allow nature to soothe the unpleasantness or at least distract you with that which is bigger than yourself.

To be honest being out in nature let me forget myself and consider things from a different point of view.  It didn’t fix my situation any, but it let the negativity slip away even if just for a short period of time.  And in that time I was able to count blessings and find some semblance of a smile from within.

Rolling Away From Anger Towards Gratitude And Appreciation

Someone Beloved knows from years ago was recently in the media discussing the importance of enjoying the little things in life while having gratitude for each moment.  We didn’t catch the live segment but a friend from Beloved’s home sent him a link to the recorded discussion.

In between rain storms and my need to rest, Beloved decided to listen to the discussion. He wasn’t expecting anything ground breaking or such from it.  He was just curious, idly so as he out it, because when he knew him, Beloved would not have suspected the boy to grow into a man discussion gratitude or appreciating the little things.  In fact when Beloved knew him best, he was an angry young man who was at war with himself and the rest of the world.

Beloved was curious as to what would bring about such a change, what life experiences had provided him these lessons.  It turns out a horrible car accident initiated the experiences which in turn taught the lessons.

A car accident which resulted in paralysis in basically the blink of an eye.  He indicated in the discussion that a spinal injury can prevent the body from properly regulating temperature.  He said a spinal injury can make you wish you could feel the rain against your legs when a summer squall suddenly popped up.  Being paralysed and dependent upon others helped him to relearn that life is made up of moments of rainbows and gentle breezes, the trick is to enjoy it all as best as you can.

Beloved listened to the discussion a few times and noted whether you are in a wheelchair or suffering from a chronic invisible illness, you tend to savour the good moments more than others would. I suspect it is because you know the dark moments that others can never even fully dream of.  And I know from my experience you don’t have the energy to keep fighting everyone and everything when you have to heal yourself.

Why Choose A Permanent Pity Party When You Can Choose Gratitude

Sometimes, especially when I’ve missed the signs that tell me I’m not doing enough self-care and it comes down to a friend or loved one insisting that I stop and rest, it’s easy to get lost in the resentment or anger of having to pause.  I know these people mean well and are telling me to slow down because they care about me, but it still reminds me that there is something that makes me different.

The other day was one of those moments where Beloved, after taking a looking st me insisted I go and rest.  At the time I felt a bit off, nothing too bad just tired and achy with a wee fever.  A smart woman would respond to these symptoms and deal with them, but I am not that woman.  After a wee disagreement, I gave in to go and rest with the four-footed one.

Beloved came into the room to take my four-footed one outside and accidentally woke me up, although I wasn’t fully asleep.  I was in that light state of sleep where you could go deeper into sleep or wake up.  I woke up and checked what time it was as I was a wee bit confused.  We had only been resting for an hour when Beloved came in.

By this point my face was proudly displaying the full butterfly rash of very active lupus.  My hands and feet had become very swollen and I was not at my best.  So I went back to sleep leaving the four-footed one in Beloved’s hands.

I was and am grateful to have people in my life who can insist I get proper rest before I realize I need it.  I am appreciative of the fact that I have people in my life who take care of the things I can’t manage all the time.  I’m blessed to have a good medical team and access to medication to help manage my lupus.

I’m grateful to wake up each morning and have some type of adventure, even if it remains only within in the house.  Some days my gratitude is for simpler things, such as the couch, a stocked kitchen and not being in the hospital.

It would be easy to get lost in the negative and throw a huge week-long pity party.  It would be easy to complain and keep a list of what I cannot do.  But why bother with any of that when I have so much to be thankful for, so many people to appreciate and so much gratitude in my life.  Yes I have a chronic illness and yes it has altered my life, but there is still much to appreciate.  Lupus does not run everything in my life and I can choose how to deal with it.  I choose gratitude.

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.

Of Dogs, Medical Appointments And Gratitude

I grabbed my four-footed companion and took her with me for rounds to my various healthcare providers.  We had gifts and much thanks to offer these wonderful people who do their best to keep me healthy despite me not always following orders.

My companion was of course a huge hit and she revelled in the attention she received.  When one of the nurses opted to take my blood work to check if I’d be able to do my treatment tomorrow another one informed me that my companion required being snuggled.  By the nurse rather than myself so that my companion wouldn’t see the blood being drawn from my arm.

I understand the logic that you don’t want a squirming puppy getting in the midst of a blood draw, and I can see the need to not have the patient hold the dog during this procedure.  I don’t really understand the dog being upset seeing the blood being drawn from my arm.  To be honest I don’t think the dog cares one way or another.  Although she might be fascinated in watching the blood fill up the various tubes.

My companion was having none of this cuddling by a stranger.  She kicked and she pushed, she squirmed and she wriggled all in an effort to get away from the stranger.  She growled and whimpered until she was placed on my lap.  Where she sat while we waited for the results.

When the rheumatologist came out to discuss the results she carefully assessed him.  She seemed to understand when he told me I wouldn’t be able to have more treatment for this year.  That’s what I took her sudden growling as.  So did the rheumatologist.  He apologized and tried to make nice to her, but she was having none of it.

The doctor wrote out prescriptions to get me through as best it can be and told me to snuggle the dog and hang on tight when things seem bad.  Because the bad moments are not nay a speed bump, until you are the one dealing with them.  Not exactly the gift I was hoping for, but within each moment we are provided lessons to learn.  This one is to allow others to help, admit things aren’t all rainbows and the appreciation and gratitude I have for those in my life, especially the four-footed kind who don’t care about lupus or that I’m not able to do everything they want.