Tuesday, June 5, 2012

Improving Stamina With Chronic Illnesses: How I'm Doing It

2012 had a really rough start in store for me. It was confusing and frustrating and I have learned so much more about my body and how complicated is. I had many symptoms that physically immobilized me and I had completely lost my stamina! Once I figured out what was wrong and things started to improve a bit, I realized that my body needed to get stronger. BUT, there are NO handbooks on how to improve your stamina when you have chronic illnesses where each day's limitations are so different.

"Increase Stamina" and "Chronic Illness" are like oil and water. Trying to do daily tasks on a regular basis is often impossible and exercising with chronic illness has a different meaning entirely than it does to the "average" world. But, increasing stamina. Ha! For the chronically ill, that is INSANE.

But, I kept thinking "What do I do? Give up?!" That seemed even more depressing than looking up at the million pound bounder I was gonna have to push up a never ending steep slope.

I figured I had to start somewhere. Mentally, I started in a place of grace. I told myself that I would not compare myself to anyone. I told myself that I would celebrate every baby step of accomplishment. I decided I would not beat myself up for what was not under my control. And I was determined to try...because really, what did I have to lose? I was starting from a pretty low bottom: I had already moved up from bed-bound with a mini-fridge and microwave on my nightstand, but was still someone who did not take a shower but once every 4-5 days because it was so draining physically and difficult Migraine-wise.

Next, I did what I know how to do really well: make goals. Now, making goals with chronic illness really is a different ball game in that actually accomplishing the goal is not really what is most important, but the fact that you tried. I started with  a long term dream goal. My long term dream goal was something that at that time I could not imagine doing, but would hope to do some day. It was not a fantasy, like climbing Mt. Everest, but a dream that might possibly maybe hopefully be accomplished if everything lined up right.

My Long Term Dream Goal: Volunteer in some form, preferably with my dog, Zoe, as an animal assisted therapy team. (Zoe and I passed our therapy test November 7, 2010, but unfortunately my health took a downward spiral and I never got to take the next steps.)

Then I wrote down a group of short term dream goals. Short term dream goals were things I could not do at all when I wrote them down, but really wanted to be able to do. In writing them, I knew it was a possibility I might not be able to do them, but they would be more possible than my Long Term Dream Goal. And finally, I wrote baby step items under the short term dream goals. Baby steps are things to work on each day to get to my short term goal. Baby steps are not necessary always building blocks leading up to the end goal, but may be something that helps me get there. I promised myself that no matter how bad I felt, I would pick one baby step from one of the goals and do it every day. My choice was "Go up and down the stairs twice a day." And if I did that, I could feel quite accomplished for the day!

My Short Term Dream Goals and Baby Steps (an * means completed as of today, June 5th) 

STDG: Walk Around the Lake (neighborhood pond) Regularly
-Stand up while reading, watching tv, on computer, doing laundry*
-Up & Down Stairs 2 times a day* (Stopped counting at 20 times)
-Stretch daily*
-Mini-exercise bike in front of tv or while doing a puzzle *
-Walk laps around back yard*
-Walk to 1st bench near lake*
-Walk to 2nd bench*
-Walk around lake* (have done this 3 times since May 27th)
-Pilates DVD: Abs* Arms/Shoulders* Buns/Thighs (currently every day)
-Recumbent Exercise bike* (I started at 5 minutes and currently up to 20 minutes! 4-5 times a week)
-Walk to friend's house

STDG:  Drive Regularly
-Drive once around the block*
-Drive around neighborhood*
-Drive to a neighborhood park*
-Drive on 45mph road for a few seconds*
-Drive on 45mph road for a few minutes* (As of June 23rd,longest distance driven: 7.0miles!)
-Drive to store in the next village over* Completed June 23rd
-Drive to store in neighborhood and shop* Completed June 23rd
-Drive to distance store and shop
-Drive to Whole Foods and do whole shopping list alone

STDG: Cook Every Meal*
-Gather easy & healthy recipes for crock pot*
-Gather non-crock pot healthy recipes*
-Stop relying on take out for every meal & eat healthy foods*
-Increase veggie and water intake* (Found I love peppers in this order: red, yellow, orange, green.)
-Cook one meal a week* 
 -Move up to increasing # meals cooked per week* (With exception of some weekend meals, I currently cook every meal every day from scratch!) 

STDG: Laundry*
-Sort laundry more often.*
-Do laundry once. *
-Do laundry every two weeks.* (Currently, do whenever needed.)
-Do linens every three weeks.* (Currently, do whenever needed.)

STDG: Get Out with George on Weekends
-A store.* June 13th
-A restaurant.*June 8th
-A local park.* June 15th
-Botanic Gardens* June 2nd
-Field Museum
-Museum of Science & Industry
-Brookfield Zoo* May 13th
-Do any of the last 5 only partly with wheelchair.
-Do all of the last 5 without a wheelchair.

STDG: Oranization
-I won't list all the things I want/need to organize. But so far, I have done the DVDs, nightstands, medicine storage area, three food cabinets, the freezer and the fridge. Currently I am in the middle of organizing a closet I threw everything into for when our cleaning ladies came the first time in April.

STDG: See a Local Friend about Once a Week
-Text Regularly*
-Call once a week
-Have over about once a week (Been successful three times.)
-Go to her house.
-Go out and do something fun together.

I must note, that thankfully, my body has also cooperated. My CDH and Migraines are significantly down in frequency and intensity. I have changed some things to my protocol that probably made this happen. I could not have done this with pure determination. I could not have done this just because I wanted it to. It just so happens that my body was improving and allowed me to push it a little farther every day.

There were days when I pushed too far, and then the next day I spent "paying for it" on the couch or in bed. It was so frustrating wondering where my limitations were and how far I could push without "over-doing" it, which is so easy for those of us with chronic illness to do. I learned early on that RESTING was just as important as doing.

At first, I felt like I was not making any progress, but George would remind me what I used to be doing...how I used to be in bed or on the couch. How I couldn't even walk up and down the stairs without a struggle and support. Keeping a log of what I do on a daily basis has helped me see how far I have come.

I am really thrilled each day.  I have been wanting to share this with you all how much improvement I have made and how well I am doing. I hadn't yet because the computer takes me away too long from taking care of myself. But, now I am so glad I took the time. I know so many people have been praying for and supporting me and I just wanted to say thank you for cheering me on.

June 24, 2012 update: On Long Term Dream Goal, waiting to hear back on date for Zoe and I to take our annual test to begin moving forward in becoming an animal assisted therapy team.


  1. How exciting, Kelly! I'm thrilled for you.

  2. Amazing to read this improvement- keep up the great work : )

  3. great blog post! Very inspirational! I'm happy for you.

  4. Wonderful blog post! Very inspirational. I'm happy for you. :)

    1. Thanks for your comment! I appreciate it!

  5. This is so good to hear, and inspiring!!

    My migraines have gotten worse, actually the pain is better but the MAV is much worse. However, if I exert myself my head starts to throb, often with sharp spiking pain. The blinding headaches each day when I wake up have lessened, now they are just there, I can handle it.
    The disequilibrium has been getting to me lately...but I think it will settle down again...hopefully.

    I'm getting a Cochlear Implant soon so I will be able to hear! I think that will help my fatigue a lot, I work so hard just trying to hear.

    But back to you, I'm so very thrilled that you are feeling so much better, and hope so much that it continues. I've missed you, I understand about the computer taking away from self care time, but I'm selfish and want to hear more about you.

    You truly are inspiring, and your goal setting is a great way to show how to build stamina, one small step at a time.
    I'm going to take your lead and make some small goals, and think about a long term goal. Right now living day to day, and trying hard to enjoy every day I feel up to it, is a goal in itself.

    hugs to you my friend

  6. I don't know if you continue to blog but, I want to thank you! I am in a similar situation and I didn't think ANYONE could understand!
    You have inspired me, I will start today with small goals daily( even if it's just up and down my stairs once today)
    Thank you😉