chronic illness

When Your Get-Up-and-Go Gets Up and Leaves

Horses racing

My life was once like this

In my life before the autoimmune disease, I was balls-to-the-walls, so to speak, all the time. I pushed myself hard to get things done. I didn’t know, as I do now, that who I am is more important than what I do. But that’s a story for a different day. The first thing I noticed, besides pervasive pain, was that I had no stamina. None. I was exhausted all the time. It didn’t matter how much I slept; I was always tired. I found a few long-term strategies to reduce my exhaustion, but while I was figuring out my treatment and how to cope with the disease, I had to make it through the day.

I learned to pace myself. It meant being realistic and

horses racing

I was racing coming and going

understanding that the game had changed. I had to limit how much I did at once, and expect myself to go slower. If it was very physical – and the definition for that changed to mean mere walking or bending, — I had to do a little, rest, maybe do a little more, and then rest. And often, that was it. I had to change the way I planned everything. And I learned the hard way that if I thought like the old me, things could get rough. Once, I had to call my family to rescue me at the grocery store. I had a cart full of groceries, but I was too exhausted and in too much pain to make it through the check-out and to the car. I needed to be realistic and plan. My joints couldn’t take much activity without getting more inflamed, and so walking or standing was difficult. The longer I was out, the slower I got.

horses walking the track

Slowing it down to a walk

I had to learn that I just hadn’t had a bad day. Rather than tell myself the next time would be better, I had to acknowledge that this was my current life. It sucked, but denying the truth set me up to fail. I could walk somewhere, but getting back might be hard. If you walk to the back of the store, you need to be able to get back to the front and then to the car. Now that I’m well, that seems like a no-brainer, but it was difficult at the time because I was so unsure of my limits and my body. I never knew when I’d get a blinding headache – which wasn’t quite every day – or my knees would get so bad I couldn’t walk.

I was a working mom with small children; I had things to do. I just had to live life in small portions. Luckily, I liked internet shopping and I had to learn to delegate. It was many years before I returned to the mall – it involved too much walking. I had to learn patience and how to ask for help, so the few good hours I had a day counted for the most important things.

horses walking track

I’m at a slow walk now

8 replies »

  1. I like your description about learning to live life in small portions. I can totally Identify with that. I smile wryly that the universe had to floor me before I learnt patience, acceptance and to appreciate the small things in life. Slow is good now. I’m very conscious of choosing slow now if I’ve been especially busy.
    Sending you love and blessings.

    Liked by 1 person

  2. I’m not sure how this comment for so long, but I felt like it was something I needed to share… I grew up hearing that God never gives us more than we can handle, but I hate that saying now. It suggests that God gives us burdens, and I can’t believe Love would ever do that. Even saying He “allows” us to go through trials makes my heart hurt. He doesn’t let things happen to us so that we will “draw closer” to Him. Can you imagine a father that would let his kids tumble down the stairs just so the kid would come running to his arms? I can’t think of God that way.

    The fact is that life has stairs. The earth is fallen. Our bodies are imperfect. And God is there. He suffers when we hurt. He mourns for our losses. He longs to make it better. He comforts us when we cry. He loves us without condition.

    Trials have caused me to doubt God’s love for me, but I learned that He walks through the darkness right beside me. He is not watching over me, waiting to see if I will stand the test in a crisis. He’s carrying me, whispering the answers.

    Like

    • Part of my path to getting well was engaging in my spiritual life differently than I had before. Being sick was not a test. It was not punishment. It began an awakening to myself and life.

      Liked by 1 person

      • I’m so encouraged to hear you say that! I see a lot of spiritual conflict when people face hard times. The struggle often adds pain to an already painful situation. Thank you for sharing your thoughts and your advice.

        Liked by 1 person

  3. I can’t even imagine how scary that was (especially at first), how difficult that must have been to deal with and how many adjustments you must have made. Thank God you’ve come through it and are so much better now.

    Liked by 1 person

    • Yes, it was scary. And I feel so relieved that I got through it, when so many others don’t. That’s why I wanted to share my tips. But also, this is probably why I am blogging; I had to stop my vigorous volunteer schedule when I got sick. I never returned to that same level of physical vitality, but I feel healthier each year. So I find less rigorous and more fulfilling things to do. Thanks for stopping by. I hope you and Daisy are feeling good!

      Liked by 2 people

Leave a Reply

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

WordPress.com Logo

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

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s