living with lupus, day by day, moment by moment

I don’t claim to be living well with my chronic illnesses.  In fact, I always seem two steps behind getting a handle on my disease activity.  I do, however, try to live a life, the best I can, despite my chronic illnesses.  After all, my illnesses will be with me my entire life, and I might as well learn to live with them.  Simply because, a life in bed is truly boring.  I should know, I was bed bound for over a year.  So how do we live a life despite our constant battle with debilitating symptoms, fatigue and pain?  Some days are not well, some days are bad and well, some days are just plain awful.  But to move forward, there are several things that I focus on:

  • Not getting sicker and losing my semi-independence: I don’t feel like I’m always getting better.  I think this is because even if I am getting better, I am certainly not well.  This could be frustrating and feel hopeless.  These are the moments when I console myself for not being sick as my sickest days.  It could always be worse! I try to find joy in not being so sick that I am completely dependent on a caregiver. I don’t take it for granted that I can shower on my own, no matter how long it takes.
  • Finding new ways to experience joy: my life was very different pre-lupus.  Not surprisingly, I led a very active and independent  life. I found joy in my work, partying, photography, playing sports, and vacationing.  When I became ill, I lamented over the loss of these enjoyments.  I am mostly homebound, limited in mobility and rely on others.  Overtime, however, I found joy in cooking, gardening, writing and the quiet company of others. 
  • Improving when I can: I don’t have the energy to live my life and spend all of my time thinking about my illness.  I mean, I would if I thought there was a cure, but as of now, there isn’t.  I do, however, try to improve myself physically and mentally daily by eating as well as I can, taking my medications, keeping up with my doctor appointments, moving when I can and being mindful. 
  • Be kind to yourself: I used to really beat myself over for being sick all the time.  I hated feeling like an inadequate mom, wife, daughter, sister, cousin, and friend.  But I stopped doing this, and it made a world of difference.  I do what I can, when I can.  I realized I am doing the best I can, even when I am resting in bed.  I am resting so that I can prevent my flares from becoming so bad that I become a big burden on my family.  And that might be more important than my participating in a social event.

I would love to see and know how you live your life with your chronic illness.  Tell me and when you can, tag #lifedeapitechronicillness so you can share with others. 

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: