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When Trying to Act 'Normal' With Chronic Illness Leads to 'Running on Empty'

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We all have moments in life when we hit a brick wall physically and perhaps mentally. It happens to the healthy and chronically ill alike.

I remember in my “healthier” life, I’d get to the end of my working week and I’d be exhausted. It was a normal exhaustion. The kind where you just needed a long, hot shower, good food, an early night curled up in bed with a relaxing book or watching a brain-numbing movie. By the next morning, the world would seem a much better place.

Bouncing back was always a given. There was never a question in my mind that I would not improve with a little rest and recreation. The next day, some fresh air, a long walk or a good shopping expedition, which were all doable back then, despite feeling tired, were wonderful recovery therapy options.

That Was Then, This Is Now.

Fast forward to a life with chronic disease, and “running on empty” takes on a whole new meaning.

Overdoing things can be as simple as missing a morning or afternoon rest period. To do so can create the kind of exhaustion I would have felt after working a 50-hour week.

So imagine what happens when someone with chronic illness, of any kind, attempts to pretend they are “normal” for a period of time.

I’ve just spent the past three months doing just that. Pushing through barriers of pain I can’t find words to describe.

Repeat spinal surgery only three months after the first attempt failed, trying to recover from both, downsizing our home, selling and buying a new home, plus moving, all have caused an avalanche effect. I’ve hit a brick wall like never before.

A long, hot shower and an early night, or perhaps a few, just isn’t going to cut it. Believe me I’ve tried.

My body is screaming. Nothing is functioning like it should be. Each morning when I awake from a night of broken sleep, I feel worse than the day before. Nothing seems restorative.

Why am I surprised?

I really shouldn’t be surprised about reaching the end of my resources.

In an ideal “chronic illness” world I really shouldn’t have been attempting any of the things I have done in recent times.

Sometimes you just don’t have a choice though. To move forward with the next stage of our lives and be better equipped to manage my health long-term, I had to find a way to push through, muddle through, mentally find depths of determination I don’t think I could ever find again.

As many know, I did everything humanly possible to mitigate fall out. If I hadn’t done this, I most definitely would have reached the point of no return much sooner.

So what’s supposed to happen now?

The answer is simple… I need to stop!

Stop everything. Do not pass any “Go” signs or I will be going immediately to ER and paying $200 for the privilege.

Seriously though, while the Monopoly analogy is fitting, I can’t afford to take any unnecessary gambles with my health.

Stopping means only going out for medical appointments. Taking each day as it comes. No agendas, no plans.

Stopping means watching TV guilt-free, writing when my brain doesn’t ache and not worrying if I can’t write.

Stopping means breathing, and just sitting quietly to have time to think and pray. Time to really listen to my thoughts, to my body and the signals it’s giving me.

Stopping means saying “No” to things I would like to say “Yes” to.

Stopping means not trying to color my hair even though it’s in a disgusting state, full of grey and I’d be kidding myself to say I’m happy with it. Being strong enough to know I just can’t do it at the moment is much more important.

Stopping means changing pillow slips rather than a full sheet change.

Stopping means meeting with my care manager to put extra services in place for me to better support my health needs in the home.

Stopping means taking time to really settle into our new home and gain that sense of peace, which comes from knowing you are safe and secure.

So what’s a gal to do?

I need to return to my “normal” chronic illness state, instead of  my current “critical” chronic illness state.

I need to let my new home hug and nurture me, and I intend to be doing exactly that for however long it takes.

I’m a “recovery in progress.”

For those of us living with debilitating chronic disease, life will throw unavoidable challenges from time to time.

Recognizing lengthy recovery time is needed afterwards is so important. We can’t rush a “Running on Empty” comeback. It’s just not possible.

With the help of my husband and my medical team, I will get back on track, but the most important person to help me through is me. I have to be committed to the recovery process. I have to give myself permission to stop.

No one else can do that for me.

If you are in a similar position, I hope you will take courage and strength from my resolve to stop. I hope you will do all you can to get yourself back on track. None of us are any good to anyone when we are “Running on Empty.”

So for a little while, I’m hanging out the “Recovery in Progress” sign. Forgive me if I go missing in action every now and again.

I need space and time, and I need it now.

I basically need a holiday at home.

Sounds rather nice when it’s put like that, doesn’t it? Don’t mind if I do.

Originally published: June 17, 2019
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