Tired, Really Tired

I’m so tired, so very, very tired.  Actually I’m exhausted, extremely exhausted and no amount of rest seems to help erase any of this tiredness.  I could rest for a year and I fear I would still be tired.

This is part of my life with lupus, I know this.  Just as I know resting is exceedingly important with lupus.  The thing is, time is limited, there are only 24 hours in a day and what feels like a million things to do.  Now I know, logically, not everything needs to get done, but emotionally I feel guilty if I don’t get everything done.  I feel as if I am not pulling my own weight and leaving too much for others to do.

So I compensate, by cutting back on my resting until I can simply no longer ignore the need to rest.  And the problem with this that I end up resting an entire weekend away just to be able to drag myself through my week-day obligations.  You know what my weekends should consist of?  Time with friends and family, not my pillow and sheets.

None of this is obviously new to me, and I’ve written about it before.  But having just woken up from a nap (not something I normally do) I am reminded again that lupus, like many chronic illnesses has exhaustion as part of the issue in addition to being exhausted just dealing with the chronic illness.  Please excuse me, but I’m so very tired and am going to settle down with a book and the four-footed one!


Invitation Seasons And Lupus

A friend told me she has several  wedding invitations already for late spring and summer.  Another friend shared that she has a few requests for cabin/lake time as well as beach time.  Beloved also has received invitations for various outings for spring and summer, and like most people he won’t be able to attend all of them so he will have to make choices.

There was a time in my life when I had all these invites as well, however having to miss so many things due to health issues and such the invitations slowly die out.  I don’t blame people for this, I mean at some point you get tired of a certain someone cancelling on you last-minute.  No matter how understanding you are, it gets tiresome.  I understand that.

The thing is, being the person who is always cancelling at the last-minute I also find these last-minute cancellations to be tiring.  I’m tired of not knowing until the very last moment if I will be able to attend a gathering.  Sometimes I lose the energy while I’m getting ready, such as doing my hair or getting dressed.  Other times I wake up and just know I can’t make it.

But as I said, cancelling gets tiring to, as does the whole sense of being isolated.  So often  times I will push myself to go out and deal with the aftermath as needed.  Unfortunately that has meant being short-tempered, snarky and such with friends and loved ones; pain never brings out the best of me.

On one hand it would be better to just stay away from anything that requires an invitation and such for both my sanity and those I care about.  On the other hand no one wants to be ignored.  Except when there are a million wedding and party invitations during the beautiful days of spring and summer!

The Art Of Well-Rested Ones

Today I learned the art of chasing bunnies.  And squirrels.  As well as the ancient practice of leaping at birds and rolling around in crunchy leaves.  I mastered none of these, but I certainly enjoyed watching the serious need to enjoy every moment.

If course the four-footed one also tried to teach me eating on the run, but I just couldn’t  get into picking up disgusting, questionable items off the ground and chewing the, to see if they were worth swallowing or needed to be spat out.  My idea of eating on the run is more of the drive-thru or eating what I have while I am walking.  Provided its human food.  Unspoilt human food.  On account of the fact that I’m picky that way!

And when I suddenly felt I couldn’t go any further today, my four-footed one curled up against me, gently urging me home where she insisted we both rest.  She decided to flop down on my feet, knowing that I’d hate to disturb her if she was resting.  And if the feet don’t move, the person doesn’t move.  And if the person doesn’t move, the person can rest.  And hopefully once the person has rested enough from lupus, then the person will help chase bunnies instead of acting like an anchor.  And a well rested person might also understand the way the squirrels tease and realize it’s important to chase them too.

A rested person will probably jump with you when the birds come around and maybe, just maybe that person will also roll in the leaves with you.  And to be honest, it’s best if that person is never rested enough to join you on eating on the run!

Speed Bumps and Marathons

I was run over by a truck today.  A massive gravel truck with an extra full load.  I believe it ran over me and then backed over me for good measure.  After that I lost count of how many vehicles used me as an annoying speed bump, barely slowing down as the ran over me too

I always thought, or rather Bugs Bunny cartoons taught me to expect, that when you get run over you’d simply become flat like a pancake. And of course through the luck of animation you’d be a bit like an accordion, all folded up.  But basically you’d come out okay in the end.  At least that’s how Wylie E Coyote was impacted.

But my friends that’s not at all what this is like.  This is unending pain, unyielding exhaustion and loss of energy. Before you become outraged and demand to know the trucking company who left me a boneless, mangled mess, settle down.  You see the trucking company was hired by lupus.

Lupus paid the driver to take an extra heavy load and hit me at high speed.  Probably paid out a bonus for he backing the truck back up over me before taking off.  The added cars that used me as a speed bump were just an added, unpaid bonus.

I think I may have used up my allotment of energy with this post to be honest.  But this is temporary, this pain and exhaustion.  I may not be like an accordion, but I’m like a runner who finds her second wind when it seems she can’t run another step.  You see lupus and I are running a marathon.  And while I may not always be ahead, it is a long race and I will come out winning this one.

Finger Food and Fatigue

There is something magical about eating with your hands.  It’s intuitive and natural.  Unless you are typing to eat things like cereal and milk or applesauce.  It’s hard to eat those things with your fingers.  Not impossible though.  Toddlers prove this all time and time again.

A friend stopped by with some ethnic food today.  We were supposed to go out together for this meal, however lupus kind of got in the way.  Around ten this morning I hit the wall that anyone with lupus knows all too well.  If you don’t have lupus you may not know this wall.  You can be feeling somewhat okay and suddenly be hit with fatigue that is soul crushing.  Or perhaps its bone crunching pain.  Maybe a combination of both or something else.

This morning I was hit with “healthy” red cheeks aka the butterfly rash and fatigue beyond belief.  Thankfully I was home and could just crash, which I did.  When my friend stopped by, Beloved was home and it was he who collected the food from my friend.  My friend assured him the best way to eat the food and get the full experience was to it the food with your hands, not utensils.  So we tried that.

Sadly my friend forgot that some of the food was meant to be eaten with a type of bread, which wasn’t part of what she brought.  And so we tried to eat it with our fingers, which made us appreciate how toddlers will try everything with their fingers first.  Because fingers feel natural.  Until you reach a certain age, where suddenly eating without utensils seems, well, unusual.  Once you get over that though, its magical and a way to let your inner child out.  Consider it a whole new way to get into your food!

Now im just going to hose off…

Betrayal By Coffee, or High Tea With Lupus

I was supposed to attend a high the today.  But I forgot.  Until it was time to be there.  And then, well, it was too late because one does not make grand entrances for high tea.  Or so I’ve been told.

I knew when I got up this morning that we had high tea scheduled.  I think I even mentioned it as a reminder to Beloved as I lurched towards the beverage of the gods, that great elixir called coffee.  Or maybe I just thought I mentioned it.  Life can be a bit confusing before coffee.

So I went from knowing, even in that pre-coffee haze of whatever life is called at that stage, to forgetting.  Forgetting after I was out of the pre-coffee haze when anything is possible because I think differently.  Coffee let me down friends.  Betrayed me somehow.

Or was it the dogs.  You see the wee beasties required a walk, also known as a million sniffs mixed in with a few steps here and there.  So I wrangled them up as one sometimes does with dogs that forgot how much they enjoy walks.  Maybe because mine don’t.  Enjoy walks that is.  What they enjoy is the million sniffs, or finding mud.  Walking, not so much. But I digress.

Somehow with all that intense sniffing and snuffling I lost track of high tea.  I may have lost track of my sanity too, but it’s debatable as to if I ever had any.  There were three trees in particular today that required a thorough sniffing over by each dog.  Followed with great snuffling around the same area.  We went maybe seven steps forward, just to turn back and make sure what we thought we smelled was in fact what we smelled.  We did this a few times.

I even pointed out squirrels, hoping they’d take an interest and take chase.  Not because I like being drug along like a too-heavy boat anchor, but because it would be something different.  By the time they grew tired of this game and headed for home I was feeling bone weary and exhausted.  So home was a good thing.

What wasn’t a good thing was letting the dogs know I was going to stretch out for a few minutes.  The dogs take is to mean I’m dying or some other such variation on the topic.  I’m pretty sure the reason they will stay where ever I’m resting is to see if, when I’m dead, they get more treats!  😉

Okay so not entirely fair because they know when I’m not well and they stay near me.  Comforting me even when I’m not aware that’s what I need.  And so because they do this, well for that reason and another, tea time didn’t cross my mind.  Until I heard the clock chime out the time and remembered that it was time for high tea.  As in tea was to be served at that time.

I phoned Beloved, explained to him that once more he’d be solo in some social setting because I could barely move.  I assured him no reason to come home, I just needed to not move.  So he attended high tea and I contemplated why energy wasn’t something you could just get more of.  You can order just about anything else online these days so why not energy?  And new joints?  Just to make life easier for those days when lupus isn’t playing nice.

except maybe lupus was playing nice because I’m not a huge fan of tea the way Beloved is.  So maybe lupus decided to exact her price now and allow me to miss high tea because she knows I have no clue how to select the right tea or eat those tiny sandwiches in a fitting and dainty manner.  Speaking of which, Beloved came home with said sandwiches and scones and offers to make me tea..

Intoxicating Cheer, or Flower Power

I agreed to go to the market because I was feeling great and hadn’t been to this market in a while.  Unlike food markets or clothing markets this one is strictly flowers.  You can smell it, in a good way, before you even see it.  Partially because it’s tucked down a little alleyway around a corner.

Nothing can bring sheer glee like a riot of colors and perfume from flowers.  It’s intoxicating.  And because it is so intoxicating, by the way why on earth are there no warnings about over consumption here, I felt a need to bring some of that loveliness back home with me.

That in, and of itself, isn’t a sign of intoxication.  However when a person ends up with more flowers than she has arms for and is still looking for “just the last few”, clearly an intervention of sorts needs to be staged.  Now.  As in impromptu if you must, hold her wallet if you must, but do not let this woman near any more flowers.  No matter how much she begs and pleads, no matter how lovely the flower is that she is currently point to. No my dear friends, do not give in.  Drag her kicking and screaming if you must.

Needless to say I had two very full arms of flowers to be purchased, much to the amusement of my friend who had asked me to come along.  She had only one, small, flowering plant easily held in her hand.  And of course smelling and seeing all the flowers, well it can wear a girl out.  Exhaustion can set in.  And you still have to make it home with your flowers.  Somehow.

My friend knows this about me so after I paid she took some of the intoxicating scents into her arms as we made our way slowly back home.  We talked about where to plant which flower, what colors might go well together and so on.  Of course upon arriving at my place I put the flowers down, provided them with a much-needed drink before I opted to collapse.  Planting and such would have to wait.  At least until Beloved made it home.  He might have the energy.

You see I spent all my energy at the market and getting back.  I always forget I have to come back. I always forget to pace myself, especially in places like that.  It’s as if lovely flowers, wonderful smells and so on make me forget I have lupus.  Or rather allow a pleasant diversion from it.  And then of course it hits me that I’ve spent energy too quickly, all in one place etc.  But it’s totally worth it.  Because seeing those flowers, well how can I not be cheerful even on a bad lupus day?

How do you maintain normal and cheerfulness with your chronic illness?