Wednesday, September 8, 2010

Internal doubts, external confirmation

Having been sick with ME-CFS for 23 years, I've had my share of ups and downs.  I've tried a gazillion treatments (well, maybe not quite that many!) and have benefited from many of them.   Most of the treatments with benefits have given their gift of improvements fairly early on, in the first month or two.  Then things seemed to plateau and, even though I'd press ahead hoping for more benefits, I'd eventually stop treatment and try something else.

A few have been devastating, such as raw juice fasting, and others have set me back 3-6 months, a mere blip in the life of a PWC with patience.  Some of those setbacks were not obvious at first:  I only realized them after several months of dogged persistence.

Consequently, I am always analyzing and judging.  Is what I'm doing making a difference?  Am I getting better or am I getting worse?

It's a difficult question to answer because variable symptoms and changing symptoms characterize this illness. One morning I may have wonderful energy and a clear mind.  I will think, At last!  I am finally getting to a point where I can do x, y, or z.  Then in the afternoon I may start to feel sick -- with a cold, or a sore throat -- and I will start thinking, I overdid it again. When will I ever learn?

The assumptions behind my thinking are:   I can control my symptoms by rest; therefore I cause my symptoms by over-exertion.   This is a reassuring illusion I have created to deal with the unpredictable nature of this illness in a world that I grew up thinking was fairly predictable.  It is also lousy logic, although because of PEM (post-exertional malaise), we get lots of experiences to confirm this faulty belief.

I got through childhood and early adulthood thinking not only that the sun would rise in the morning, but that I'd be the same person tomorrow that I was today, that I'd do certain things I had planned to do, and even if my to do list was too long for tomorrow, I'd get to most of the things on it by the day after tomorrow.  That predictability could be illusory (and that some Eastern philosophies claimed it was) went way beyond my consideration, except for the most obvious situations involving risk taking that could lead to bodily harm or death.Even in such situations, however, there was a certain predictability, because I could predict that walking in a certain neighborhood alone at night was more likely to lead to bodily harm than walking in the daytime and in other neighborhoods.

One of the hardest things in ME-CFS is living with uncertainty.  Like the kinds of traumatic stress that lead to chronic PTSD, the uncertainty caused by this illness, combined with the tremendous losses it creates, leads to its own kind of stress disorder.  I, and most of my friends, have lost our intellect, our physical strength, our stamina, our clearheadedness and executive functions (decision-making, prioritizing), and those of us with more severe cases have lost our independence and financial security.  The losses further complicate the physical symptoms by creating a roller coaster of emotions.  

My emotional roller coaster generally looks like this:  disappointment -> anger -> fear -> more disappointment -> despair -> relief -> hope.  

The roller coaster of recovery has been much the same, but without despair.

Consequently, it was reassuring to get positive reinforcement from my mother and my sister, when I saw them at the end of August.

My mother tore the cartilage in her knee in early August and, when she set a surgery date on Aug 18 for the following Monday, I picked up my life and drove to help out.  Normally, my mother does a lot of taking care of me when I visit, since I'm usually tired from the 7 hour drive, and since she still likes to do mothering things like making dinner.  This time, however, I was not just on my own:  I was taking care of her.

I quickly became exhausted.  In fact, the first night I arrived, I became too exhausted to finish the dinner dishes, and could not restore myself to balance with lots of yoga and lying around.  But it was a great learning experience, for it made me aware of this important fact:  I have not had this kind of over-exertion/stress reaction for 3 whole months.  And I have been doing more and more and more.

The following days, while dealing with a recurrent cold, I continued to do what I had to do.  I was always tired, and probably lay down twice as often as I do at home.  But in doing so I discovered another amazing thing:  I am actually feeling rejuvenated after resting, which is quite a new experience for me (or rather a much-missed one from my pre-CFS days.)

My sister came in for 2 days, helped a little with dishes and errands, but also increased the energy required for conversation, and the overall level of busy activity in the house.  By day 4, just as I was complaining to my mother about how often I needed to rest, I got the most wonderful feedback.  She and my sister had been talking about how different my energy seemed to be, that I seemed more vibrant, that my walk was stronger, that I seemed capable of getting things done more efficiently.  Wow!

Mom's comment made my week, and now that I'm back in Ohio, I remember her assessment as I cope with yet another new phase of my healing journey, one I'll talk about in my next post..... whenever.