Self-Care with a Chronic Illness

To be honest…the last few weeks have been difficult.  Living with a chronic illness is just not fun.  Nightmarish even.  This isn’t the way I envisioned my life being like…and I spent a lot of that time recently letting God and my poor husband know exactly how I felt about that.  I tantrumed…and sulked…and ugly cried.  A lot.

…and then I did a bit of researching and reading…and a whole lot of pondering.  Little by little, some answers came.  A little more understanding.  Some new things to consider.  But ultimately…my answer was “you have the tools you need…use them!” and “be kind to yourself”.

Self-Care

To be even more honest…I sorta cringe at those words.  I can’t tell you how many times I have groaned while reading about ways to handle chronic illness (pain, fatigue, fibro, mcad, etc) and “self-care” pops up.  Or how emotionally dinged I feel when I hear “be kind to yourself”.  They’re right…I know they are…but I struggle with that on so many levels.

You see…

I have hated myself and my “fate” for a very long time.  How can I possibly “care” about something I can’t even like?

So if you’re reading this…and cringing…I hear you.  I get it.  I really do.

We can work on changing that though.  We need to change that.  Time for a mindshift, right?  Self-Hate…must become…Self-Care.  Why?  Because we deserve to be loved and cared for…especially by ourselves.  Our bodies and minds might be broken…and bruised…and tired…and so very lonely.  But we are fighters.  We are warriors!  We are amazing!  We got this.

We do hard things every day.

So we CAN learn to love ourselves.

I’ve been pondering, off and on for the last few days, on just how to do that.  I think I’ve figured out…at least for me…a few things that might help.  If you’ll bare with me as I bumble a bit through my explanations…perhaps they might help  you too.  And because I believe in the power of imagery, creativity, and art…I made this:

SelfCare

Self-CARE…Compassion; Awareness; Rest; Eat

I am working on believing that Self-CARE is important all of the time…for everyone.  But it’s so much more important…almost vital…to Self-CARE during those difficult times of  a flare.  Tuesday marked the beginning of my “cycle”…the beginning of an estrogen flare…and it was a very busy day that used up way more spoons then I had (one I do not regret and would do over and over again).  I knew I’d “pay for it”…and boy have I!

COMPASSION

It’s so easy to have compassion for others.  We see their pain and tears…their struggles and trials…and our hearts are moved for them.  We may not be able to help…but we want to nonetheless.  Empathy…love…concern…tenderness…mercy…kindness.  It’s time to give some of that back to us.  I need to learn to love myself.  No pity…I don’t want others to pity me…so there shouldn’t be any reason to pity myself.  No pity.  Just kindness.  It’s time to be kind to myself.  *sigh* (I’m trying so very hard not to cringe…)

AWARENESS

Being self aware is, I think, key to so much.  We need to be aware of triggers…and when things just don’t feel right.  And we need to know when to stop…and go.  We need to know ourselves…body and mind.  What makes us happy…or sad?  What is comforting…or jarring?  What brings us peace…or causes chaos?  My husband is so very good at “reading” the signs…but he’s not me.  I have to be self-aware…and communicate when need be.  But keep in mind…there’s a huge learning curve here.  Be kind.  *sigh*

REST

I hear this ALL the time.  Rest…”you can’t get better if you don’t rest!”  OYE!  I know that’s true.  I really really do.  But come on!?!  How can I possibly “rest”…when I hurt so bad?  How can I possibly “rest”…when there’s so much to do?  How can I possibly “rest”…when my kidlets need me?  How can I possibly “rest”…with so many responsibilities?  How can I possibly “rest”…when I want to do so many things?  (How can I possibly “rest”…when the neighbor’s stupid dogs nonstop bark every single time I lay down?)  But “rest” I must…because if I don’t…I loose the ability to cope…and healing is nearly nonexistent.  The key is figuring out what “rest” can and needs to be.  Sometimes it has to be sleep…no “ifs, ands, or buts” about it.  Sometimes it’s reading…or watching a movie (or 2 or 10 or 68) and snuggling…or playing games.  Sometimes I can get away with painting or other creative endeavors.  And sometimes I can blog…lucky you.  🙂  Rest.  Not guilt…nor shame…nor embarrassment.  Rest…for peace and healing.  Rest…because we must.

EAT

Okay.  I admit it.  It was kinda hard coming up with an E.  I suppose exercise would work here too.  But for many of us…exercise is not possible for many reasons.  I’m working on it…but right now too much exercise triggers mast cell degranulation…and “too much” is not a fixed amount.  I think EAT fits better right now.  Above and beyond the obvious reasons…what and how we eat has a huge impact on our chronic illness.  I think there are 2 things we tend to do during a flare.  Not eat much at all…or reach for things that do more harm then help.  I do it all the time.  In fact…I’ve been steadily working through a bag of doritos since yesterday.  Am I saying that’s wrong?  No…of course not.  It’s a comfort food during my period.  But I’m also very much aware of the fact that I’m probably doing more harm then good.  I’m working on that.  There are many circumstances that make eating healthier very hard to do.  I get it.  I could probably be the “poster child” for that.  Eating healthier has been something that we’re working on.  I strongly believe that better nutrition makes a huge impact on my body…and my chronic illness…and my ability to cope.  But I’m not perfect…and sometimes a bit of ice cream (“a little bowl of comfort”) or a bag of doritos is okay.  I’m working on it.  There is progress…I haven’t gone through a bag of reeses chocolates!  In fact…I haven’t craved much of anything sweet this go around.  “Butterfly steps”…I’ll take it.  🙂

So…those are some of the things that I’ve been pondering about self-care.  If you’re still cringing…that’s okay.  We’ve spent a very long time mired in self-hate…it’ll take time to change.  But I’m determined to work on it.  Compassion….Awareness….Rest….Eat.  I got this…after all…I do hard things every day!

Please share with me some of the ways you Self-Care…I could use all the tips and tricks I can get!

***Oh…I just thought of another E…Endure or Endeavor.  *more cringing*…but sometimes…we just have to hang on and get through it the best we can.  Enduring the best we know how…and Endeavoring to find some spark of joy…of hope.  Hmmmm…I’m thinking there might be another blog post about this in the future.  🙂

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