Chronic illness – do you know how much is too much?

All of my life, I was a morning person. I didn’t pull “all-nighters” in college –I was probably the only one on campus getting out of bed at 6:00am.  But one result of living with chronic illness all these years is that I need a lot of sleep.  Yet, when I couldn’t drag myself out of bed last Sunday morning until 10:00am, I knew it was going to be a very tough day. My sinus headache was penetrating, my legs dragged like logs, and I felt “flu like” from the MS Avonex medication.  My husband and I had planned to get a lot done on the new house but all I wanted to do was sit in a chair, drink tea and read the newspaper.  Or better still, crawl my way back under the covers.
There were many times in the past that I would have been quite grumpy while trying to decide what to do — worrying that I’d make myself worse but regretting not doing it.   Most of the time, I chose not to do the activity because I dreaded feeling even worse and being more incapacitated.   Making the decision was never pretty.
But back to yesterday.   I’ve been doing pretty well for a while.   I thought I’d push it this time. It wasn’t a big choice – just something that flashed through my consciousness. And, it was ok that I did.  I did feel lousy all day but I didn’t feel worse as the day went on which would probably not have been true in the past.
And that’s the difference, in a nutshell. I can push myself and not think that I’ll feel that much worse for it and I couldn’t behave that way for the past 25 years. This is a very different mindset!

A client with multiple chronic illnesses was talking about just this issue today. She’s spent her lifetime “pushing” herself and doesn’t want to stop now. I can understand that.  But, on the other hand, she worries that when she pushes herself, she’ll make herself sicker. I can understand that, too.  And, to top it off, she labels herself “lazy” if she doesn’t push herself.  Hmm, that’s not helpful.  How can she make any decisions with all this swirling around in her mind?

We have to get to a different place about this. It’s too much a part of our lives to ignore that we have our good days and our bad and they’re unpredictable.   We haven’t got a shot at dealing with this issue until we stop labeling ourselves.  Labels (you know them: I’m weak, lazy, a loser) inevitably make us feel badly  (we rarely label ourselves something positive) and then we take an action based on the negative.  Wrong reason for action. We have to pay attention to our bodies and not ignore what’s there. The truth is that for most (although certainly not all!) of us with chronic conditions, it is not life threatening when we get worse.
So, can we think: I’m feeling worse and I will most likely feel better again. Hope… and resilience.
Rosalind