Logical, Guilt and Lupus

What do you do when you feel like you are running on fumes and a million miles away from getting fuel?  Some people might phone for fuel to be brought to them, but what do you do when you have no signal to make that call?  Well some folks would find the means to walk to get some fuel.  But I can’t even do that.

It’s all I can do to make it from where I have been lounging to the kitchen or to the bathroom.  I just simply do not have the energy. I know that to some people that sounds lazy and I guess in some ways it may be so. The thing is, it’s a lupus kind of day.  If you have lupus you know what I’m talking about.  Those days where getting dressed feels like you’ve run a whole marathon. Or you want an award for having a shower.  Maybe all you could do was brush your hair.  Yeah that kind of day.

So with this lack of energy comes waves of guilt. Guilt about not doing anything around the house.  Guilt about not being able to go above and beyond on things I wanted to do.  Guilt that I couldn’t really walk the dog today. Guilt that I am not pulling my weight around here.  And guilt that others have to pick up for my slack.

Now I understand that it’s not my fault and sometimes the best thing to do when you have a lupus day like this is just rest so you don’t make things worse.  Logically this makes sense. But logic and guilt do not work together.  Guilt just invites itself to the party and then tries to become the life of a party.  So yeah, guilt doesn’t help matters and yet there is it.

So today I’ve just tried to focus on getting better.  Getting my energy back enough that I can do some things around the house.  I promised myself I’d pick up on my project tomorrow, imagining that I’m crossing my swollen fingers, that I will somehow be able to live up to that promise.

I have so much more to say about these days, but the truth is, I’m to drained to sit up and write more so I will rest again instead.


Wrapped In Rules

I’m not the best at following all the rules.  There is a part of me that just has to see what it is that happens when you tell me not to,do something.  However with this burn to my right hand, I have yet to peek at the hand through my own doing.  I’ve seen it each day as the nurse has removed the mummy bandages.

I’ve seen it as the doctor looks at it and treats it and I watch it get recovered in all the wrapping again.  And through this all, I expect something to suddenly show it’s healing because I’m following all the rules.  I’ve kept my hand dry.  I’ve let Beloved help with my hair, makeup and anything else I need help with.

Alas it doesn’t show much healing.  The doctor assures me that good things are happening, but I don’t see it.  Of course my lupus has decided to respond to the burns as well.  Not only are they treating my burnt hand, but they are treating lupus too.  And sometimes those two things don’t work well together.

So when I causally mentioned I could still feel a burning sensation in my hand, he told me that may be lupus.  He wanted my specialist to come and look.  He insisted on running labs.  And all the while I wondered how this could be, since I was following the rules.

For the record the lupus specialist said things are turning a corner and to just continue what we are doing, but to increase one of my meds.  And all I can think of is if I hadn’t followed the rules, would things really be any worse?

Beloved has gotten rather good with hair and makeup.  He has figured out how,to,prepare meals that are wrong hand friendly.  We both had a good laugh at me trying to eat spaghetti with my left hand when I right-handed.  And I’ve gotten rather comfortable with my mummy style wrapped hand.



How do you get through each day when it takes all you have to drag yourself out of bed, sorted out for work and off to work? How do you get through each day when it takes everything you have to work and get back home again? What keeps you going?

These are questions I struggle with because when you have lupus, you tend to have an energy issue. You also have pain issues, possibly rash issues, physical limitations and a whole host of other fun things. But you have a fatigue that you cannot even begin to build up enough reserves to power through. Not without paying a huge cost.

Smart people, people who have learned the art of give and take with their illness set time aside each day to rest. These smart people check throughout the day to see how they are feeling and if they need to slow down, reschedule things etc. These people have figured out that since you can’t force more energy upon yourself, you must find another way to manage. These people are not me.

No matter how long I have been paired up with lupus, I still try to push myself into a new level of energy. Theoretically I know this won’t end well. History tells me that the only thing that will result from me pushing so hard is that I will be in worse shape and whatever lupus was doing will somehow turn out much worse. I know all of this. I have lived it multiple times. And still, each time I feel my energy dropping, my go to response is to dig in and fight it until I collapse. Did I mention before I’m not a smart person?

When Beloved or a few close friends are nearby, they will attempt to intervene and insist I rest. Okay Beloved probably has the most pull in this, but still everyone tries. Of course, as Beloved put it last time when we were headed down this path “even a stubborn mule will eventually realize that there is another way to get what it wants. One would think you could have figured this out already.” It isn’t that he is a cruel man. It isn’t that he is giving up. It’s that he knows that he can’t win this. Not when I’m that far down. All he can do is be there when all the pieces fall, and I collapse on the floor. And then, well then, he picks me up ever so carefully. And as he carefully tucks me away he tells me to rest. And much later, when I’ve had some rest, he asks me if the floor and I are having a special relationship that he needs to know about given how many times I fall for the floor.

It doesn’t mean he is right, or that he is somehow smarter than I am. It just means he isn’t going to fight a losing battle. He will let things go the course they will go and then he will deal with the fallout. I’m pretty sure that’s exhausting for him too. At some point he may get tired of the routine and be too exhausted by it all to even bother picking me up anymore. And then, well then maybe he will see the appeal of the floor

Of Beaches And Jelly

Today was one of those days where I just found myself dragging to work, dragging back home where I could then work on my impression of being a beached jellyfish. Because that’s how lupus made me feel today. Not that I really know what a jellyfish feels like because let’s face it, I’m a chicken when it comes to inflicting pain upon myself for no real purpose, so I have never been able to get one’s attention. And I certainly have no clue what a beached jellyfish feels like.

I do, however, know what it feels like to have minimal amounts of energy to begin with and to expend it completely on things like going to work, working and coming home. It means you have no energy left to do things like play with the four-footed one. It means that someone else has to be picking up the slack because you simply cannot move, not even to get up and cook a meal. It’s hard enough just having to heed the call of nature.

I also know that it means not knowing when your energy will come back, or if it does, to what degree. And I know that it means not making plans too far in advance or too adventuresome because changing plans also can cost energy. Energy is a fickle thing. But so am I. And I’m okay with that. So I have to be okay with lupus being fickle too in how it steals and uses my energy levels.

When I’m a bit more lively, I may have a rather good tongue lashing with lupus about being so much of an energy hog, but for now, I shall be a jellyfish. And hope the four-footed one doesn’t mind keeping me company on the floor. If you need me…I will be down here, somewhere.

Bits And Pieces

I’m falling apart.  Tiny pieces of me are breaking free, dropping off or just disintegrating.  One day a finger, or part of a finger, my just fly off while I’m typing.  Perhaps as I’m walking my foot will just decide to go a different way, without my body.

Okay maybe it won’t really happen that way, but it feels as if that may actually happen.    I’m putting that out there because my specialist assured me that neither of those things will happen.  Yep, it’s been medically asserted that my finger won’t fly Orr nor will my foot detach and go its own way.

This should be a relief for me.  But it’s not.  Because my specialist likes to be “thorough”.  And so after a slight pause, said specialist turned around and assured me that my joints are disintegrating so I will feel more “loose”.  He also assured me that my bones will continue to do their crumbling down routine thanks to lupus and Osteonecrosis.  Nice.

I was good with the first assurances.  I could live with those and accept them.  I’m not so sure that I needed his complete honesty with the rest of it all.and so now a bit of my joy is also falling apart.  But that’s temporary, unlike my joints and bones.  Still, at least my fingers won’t fly off and my foot won’t shuffle down its own way.

Lessons From Getting Out Of Bed

I was going to take the four-footed one for a fun adventure today.  I was on track for making this happen, until I actually tried to get out of bed.  The struggle to get out of bed was a warning sign for how the rest of the day would go.  And a fun adventure was not in the plans any more.

Thankfully the four-footed one didn’t care if we stayed home or went out onto an adventure.  The four-footed one just cares that she gets attention, love, treats and cuddles.  Oh and her every whim given into as it comes to her attention.  If you really want to impress her, give into her whims before she even knows that it’s her whim!

So we spent the day quietly, doing less active things, but still having fun.  Between her and lessons from lupus, I have come to appreciate the essence of the things rather than the big ceremonies.  The four-footed one doesn’t care if it’s a special day, she makes the day special all on her own.  Lupus has, at times, a way of getting in the way of celebrations, plans and such.  So you learn to find other ways to celebrate, or have plans that are flexible enough.  For example, lupus may not mean not going out to a park, instead it means ensuring you have shade, water and places to rest.

It’s just a matter of how you look at it!

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.