Tuesday, May 14, 2013

Living with Chronic Illness

Living with chronic illness, my daily "to do" lists don't look like most.  I can't plan much because I don't know if I'll be able to get out of bed that day, how much I'll be hurting, or what level of energy I might have.  With a husband and five active children, there are plenty of things added to each day.  I have to keep my own plans simple.  Very simple.  Many times this has left me feeling like a failure because I can't do as much as others.  Or overwhelmed and paralyzed because there was so much to do and I didn't feel like I could do anything.  As a therapeutic project, I spent a lot of time examining my life and figuring out what I could realistically expect to get done each day.  This way, even on my worst days I can feel like I've accomplished something.  It helps.

Worst Days:
  • eat something
  • do something - anything
  • try to communicate current status to family
Bad Days:
  • eat
  • make my bed
  • put a bra on
  • spend time out of my room, at least five minutes
  • communicate with family
Down Days:
  • eat
  • make my bed
  • get dressed
  • open curtains/windows
  • shower if needed
  • brush teeth and hair
  • try to spend some time outside, no matter how small the amount
  • let family visit with me in my room
Iffy Days:
  • eat
  • make my bed
  • get cleaned up enough to leave the house
  • open curtains/windows
  • leave the house
  • talk to someone outside of my family, even if only online
  • clean something - anything
  • shower if needed
  • spend time with family outside of my room, no matter how small the amount
Good Days:
  • eat healthy food, try to stick to schedule and track
  • make my bed
  • get cleaned up enough to visit with friends
  • open curtains/windows
  • drive somewhere - anywhere
  • go for a walk or do yard work
  • listen to a conference talk/devotional or read church magazines
  • shower
  • pick up the living room
  • talk to someone outside my family, in person or by phone
  • try to stay out of my room
Great Days (add any of the following to Good Day plans):
  • do something creative (write, draw, color, crochet, flute)
  • do something that feeds my soul
  • do real exercise
  • meditate
  • vacuum the living room
  • straighten the dining room
  • clean the kitchen, including a load of dishes
  • do a load of laundry
  • write a list of what's been weighing heavily on my mind
  • run errands
  • shop for fresh fruits and vegetables
  • play a game with someone
  • clean for 15 minutes - no more
  • do deep breathing
  • do calendaring/scheduling
  • do budget/bills
  • spend more time out of my room than in it
Every Night:  choose one thing I want to get done the next day; forgive myself if it doesn't happen
Every Day:  pray and spend some time in the scriptures, no matter how small the amount
Bonus Points:  talk to my husband in person and make some kind of physical contact

I try to make my bed every day because it makes me happy.  Anything beyond what's on these lists would be a major accomplishment and might cost me the next day.


Anonymous said...

(HUGS) one day at a time babe and sounds like you know that and refuse to give up. Praying for you.

The Dose of Reality said...

Have no doubt that this post helped someone. Someone who is struggling who knows she is not alone.-The Dose Girls

Michelle said...

Sometimes its better to just take it one day at a time! You know what you can handle each day! Thinking of you!

Honeybee said...

I like your list. I can relate to most of them. You are not alone.


Vicki M. Taylor said...

Oh sweetheart, your list echoes mine. That's exactly how it is for me during good/bad days. What gets done, gets done. What doesn't, doesn't. I've learned to forgive myself a long time ago for not being able to do all that I could/should/would if I could/should/would be able. I'm here for you. Stay strong. Be diligent with your scriptures. Get close to God. He will keep you strong. Have a blessed day. Followed you from SITS.

Vicki M. Taylor said...

Stay strong. Carry on. Live life one day at a time. Followed you from SITS. Have a blessed day!

life...just saying said...

Your honesty is always appreciated. Thank you for sharing your story. I am adding my prayers.

Susan Cook said...

Stopping by from SITSSharefest, hope you are able to have more good days ahead.

Thinking of you :)

Heather said...

Miss Robin -

Your raw authenticity and willingness to be open are courageous acts. Thank you for sharing.


Kammie @ Sensual Appeal said...

I think you're very brave to be posting this and it proves that you are not giving up and THAT'S the way to be! Stay positive and I'm sending good vibes your way!! xo

Lisa Newlin said...

It looks like you are aware of your difficulties and struggles, but you are taking steps to deal with them and push yourself. I know it may seem like you aren't getting anywhere, but the fact you understand what you're dealing with and are making efforts to cope is a big deal. You should be proud of yourself. :-)

Thistle Cove Farm said...

What a great accomplishment! Making those lists and putting it in writing sure helps keep focused AND you're able to see you're accomplishing this thing called life on a daily basis. That's all He asks...for us to walk daily with Him. Anything more and it's us who puts on the stress dress. It's not what He wants for us but because He's always God (always good but not always safe, like Mr. Beaver said), He sometimes allows us His permissive will and we reject His perfect will.
It's a lifelong lesson. So glad you stopped by Thistle Cove Farm; I followed you home.

Anonymous said...

I understand! My husband has several diseases that cause debilitating pain 24 hours a day. Sadly there is no cure. Sometimes when I call to check on him he's been unable to even get himself something to eat. Some days I need to stay home from work to care for him. And some days he can move around for short bursts of 10 minutes (those are really good days!). You do what you can, when you can and be happy that you were able to do it. Best of luck to you!

Tamara Camera said...

It's so powerful that you have goals for your worst days - I think my worst days without chronic pain can be less productive than that. Best of luck to you for better days!

The Rantings of a Drama Queen's Mum said...

I can totally relate. I'm always exhausted. Not sure if I have chronic fatigue syndrome, but I feel like I do. I'm proud of myself when I get my daughter to school & off the bus & get dinner cooked etc.. Most people don't understand that.

Mariann said...

This post has stirred up a spirit of gratitude inside of me. The things that you're lucky to do on your "Great Day" are things that I'm sure most of take for granted. This post has made go from focusing on what I don't have to appreciate what I do have and what I can do. #Touched
Thank you for sharing your truth with all of us!

Pam said...

I appreciate your honesty so much. I,too, have a chronic illness and can relate somewhat to your list. Hang in there. Your post helps people know they aren't alone. Have a great Monday.