Monday, March 14, 2016

Managing my spoons

In order to understand this post, you need to read Spoon Theory by Christine Miserandino. 

I have known about Spoon Theory for years, but generally my chronic illness doesn't limit my spoons.  Except when pregnant, things are pretty smooth and I don't feel sick in my daily life.

But over the past 4 years I have absolutely felt sick.  I've been in a tremendous amount of pain. 

I injured my hip, had surgery, and will have surgery again in a couple months.  No, I don't regret the first surgery.  I am better off than I was.  I just hope that I can be better off still.  And by that I mean that I hope I don't have to give up traveling with my family simply because I can't sit for long periods of time.

While recovering from the first surgery, my opposite foot started to hurt.  I was in a boot for a suspected stress fracture when we moved across the country.  When we moved back, I had some new and bizarre pain and it was in both feet.

Over the past few months the foot pain has at times been unbearable and I have found myself planning my days and weeks around what I expected my feet to feel like.  Cocktail party late in the week?  I can't clean the house before it because I'll already be in too much pain.  The kids have a basketball game today?  I need to stay off my feet in case the game is running late and I need to stand outside the court.

Some mornings I woke up, put my feet on the ground, and the floor felt so hard and cruel and painful that I knew I wouldn't be able to withstand the pain of a shower (the hardness of the shower floor and there being nothing I could do to soften or angle it made showers one of the most taxing parts of my day).

I've been on a nerve drug for the pain and finally got a diagnosis.  Frustratingly, I then figured out by myself that the drugs I'm on for my kidneys might be the cause.  The timeline makes sense, assuming the initial pain really was a stress fracture.  I went on the kidney drugs as the stress fracture was healing and then this nerve pain started up because of the drugs.  Maybe.

I've been off the drugs for 2.5 weeks.  I think my feet are much better, but honestly I'm now so accustomed to being cautious about how much I'm on my feet that it's hard to say.  I put them to the test by making dinner today and I don't even have a little pain, so either the placebo effect is totally amazeballs or the drugs were the culprit.

Except.  Now I'm off the kidney drugs.  And I travelled over the weekend and ate a lot of salt.  My blood pressure was frightening yesterday, but better today after returning to my low-sodium diet and drinking a lot of water.

AND if the kidney drugs were the culprit, I'll go off the nerve drugs.  Which means night terrors.  I shit you not.  I took this drug short term in college and weaning it was very memorable.  Even now, if I accidentally skip my last dose I wake up in a panic in the middle of the night.  I never enter REM sleep.  I don't dream.  I just wake up in a panic.  Sometimes sweating.  Over and over and over.  So I have that to look forward to...I hope?

And don't forget I still have hip pain when I sit.  So I can't sit for long periods of time and I can't stand for long periods of time.  Cocktail parties are my nightmare.  Even studying for classes.  Having coffee with friends.  Sitting at the dinner table.  Painful!

I'm so tired of physical therapy and multiple doctor appointments and hurting and planning my days, weeks, months, life around what will hurt and whether it's worth it.  And I worry.  I worry about my kidney health and my heart health, which is so closely related to the kidneys.  I worry that I'm going to be in pain forever.  At what point do I accept whatever amount of pain I'm in?

And I'm impatient.  I'm waiting for my husband to be able to take two weeks off work (because I won't be able to drive and I will need to get to physical therapy, the lab for kidney tests because I'll be on drugs that can damage my kidneys, the kids need to get to activities, etc etc etc).  The delay means I will have to skip some things I'd like to be doing this summer and deciding to go ahead and do others I may really regret - like sitting all day for 5 days a few weeks after surgery...

About a week-and-a-half ago I ran out of spoons.  My husband didn't even know what I was talking about when I sobbed to him over the phone "I'M OUT OF SPOONS!  I HAVE NO MORE SPOONS!"  He was on his way to a conference and I was home alone with the kids completely out of spoons physically, mentally, and emotionally.  Between anxiety, pain, and the mentally taxing logistics of being the parent who maintains everyone's schedules, makes sure everyone is seeing the doctor and dentist when needed, who is the default sick care whose schedule get re-arranged (and oh!  I do have a schedule, and it is busy.  Someone imply to me one more time that being a stay-at-home mom is easy and I'll punch them in the nose!)...I ran out of spoons.

That night I turned into a puddle of neediness at bedtime.  I told the kids that I hurt all the time, and I have this job that is completely thankless.  I reminded them of how much they crave recognition when they've done something cool, or even just worked really hard at something.  And most of what I do is basically invisible.  I work hard to get a meal on the table - feet on fire - and I'm often met with complaints.

Both boys cried with me, hugged me, and told me how much they love me.  Bean wrote me a note telling me how good I am at being a mom.

In an effort to take care of myself, quell my mounting anxiety (you guys - TRUMP????), and force myself into some reflection and meditation, I'm signing out of Facebook for a little while starting tomorrow.  I'm not sure for how long.  But I need to make sure that I guard my spoons and consciously choose what to use them for, because running out of them was seriously ugly. 

If you want to reach me, please email me at contentedlycrunchy at gmail dot com.  If you have my phone number (or my other email address), those are also great ways to reach me.

See me regularly and didn't know I was in so much pain almost all the time?  That's because I'm a Spoonie.

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...