Thursday, June 30, 2011

Mission 2011: Flexibility

Great Flexibility !Image by khalid almasoud via Flickr
I'm not sure why, but in my mind the words "routine" and "flexibility" seem to be at odds.

I mean, if you have a routine and you are doing the same things on a daily, weekly or monthly basis, where exactly does flexibility fit into the picture? Wouldn't it make more sense to abandon a set routine if your life requires a high degree of flexibility?

After all, it's hard for me to get anything done consistently day to day when my energy level can vary greatly minute to minute, hour to hour, day to day.

What really brought this point home to me this week was my follow-up appointment Tuesday with my hepatologist.

When he asked me how I was doing, I mentioned that I was feeling more fatigued and having more problems managing my diabetes. I almost said, "I'll make you a bet it's because my Hepatitis C viral load has gone up again." Sure enough, when he shared with me the results of my blood work drawn a few weeks earlier, I've learned that my viral load had gone from 11 million to 24 million in a little over 12 months.

I was floored.

After I got over my shock, which took a few hours, I realize this was the explanation for why it has been so much more difficult for me to get things done over the past several months. It also explains why I have been more prone to fatigue flareups when I try to live outside my energy envelope. I then really connected with the fact that my experience of chronic illness is an ever changing state of being which requires a large amount of flexibility on my part to change and adapt to my highly variable health status.

It makes me wonder if focusing on a routine is really relevant for me.

After sitting with this thought for a few days, I recognize that limiting how much I organize my day using routine is perhaps the best approach. The routines I talked about last week, which involve my bed time and awakening time, do work and I will continue to focus on utilizing and refining them. They truly do help me get my day off to a good start and help me transition into sleep, an area that has been profoundly affected by my chronic illnesses.

But I need to have the flexibility to arrange the rest of my day based on my pain and fatigue levels. To put this into the frame of a routine, I guess I would say that, in general, I have on average two to four hours during the day in which I can engage in activities that require my energy, attention and physical abilities. The rest of my day needs to be spent reclined on the couch engaged in passive pursuits and resting.

As I read this back to myself, I see that I'm building my case for trying to treat my Hepatitis C infection once again. And I did talk to my doctor on Tuesday about the new antiviral drugs that were recently approved to treat Hepatitis C. At my appointment, we decided to put off the decision to start treatment until I see him again in January 2012. Hopefully, by that time, he will have gained more experience prescribing these new medications, which will allow him to make a better recommendation to me about which course of treatment might work better. This gives me six months to get my head into the right place to prepare to do battle again.

I want to end this post by acknowledging that many of you may be in the exact same position I am with the illnesses you live with on a daily basis. I remember asking the staff of the chronic pain and fibromyalgia rehab program I attended back in 2005 what the prognosis for fibromyalgia was. I had to push because the staff was a little reluctant to share that information with me. What I learned is that at any given time, one third of people with fibromyalgia are getting better, one third are staying the same and one third are getting worse. While I'm sure the staff wanted me to focus on doing everything I could to get better, my reality has been staying the same or getting worse.

Understanding and accepting the reality of how my illnesses work really puts things into perspective for me. It helps me not feel so bad when, despite all my self-care efforts, I can see no measurable improvement in my symptoms. After all, it's hard to obtain improvement when your illness is getting worse.

A lack of progress does not mean I should abandon my self-care practices. It just means that, at the moment, more rest, pacing and patience are needed.

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1 comment

deb aka murphthesurf said...

Good advice on accepting where we are when we are in our disease(s) progress. It is a balancing act that I am still trying to manage after 13 years. Being flexible is the key...flexible enough to realize that I need to rest. I truly hope you find some help with your hep C.