Fatigue

I feel like I am a set of nicad batteries. Each night I go to bed to plug in and recharge. In the morning, I wake up, my batteries fully charged ready to power me through the day. But, just like those old nicads, with each recharge, the amount of energy my set packs each morning is decreasing. And, just like the cordless gadgets that run off those batteries, I'm running shorter with each recharge.

My nicads are pretty worn now. I'm not sure what my charge level is, but by my SWAG method (Scientific Wild Ass Guess), I'd estimate I pack a maximum charge of around 30%. I am still doing okay but energy management is something I have to consciously think about each day. With each drop in charge, I have to make another cut in what I do to conserve energy. Gone long ago, were the high energy activities around the house such as moving compost, rototilling and cleaning the garage. Now, it's the simpler tasks like shopping at Costco, going for a leisurely walk or a night out after work.

At work, my managers and coworkers have been fantastic, I am really blessed to be supported by such a wonderful group of people. They do everything possible to accommodate my muscle weakness so I can continue to work. Unfortunately, despite all their help, work is becoming more difficult. It's not the muscle weakness, my colleagues have seen to that. It's the fatigue. I often worked 60 hour workweeks, sometimes 70 hours - something we do willingly to provide for the family - but now 40 hours is a struggle. By the end of the workweek I'm totally spent and it takes one to two days of complete rest to recover.

Losing energy is one of the hidden facets of Al that one rarely sees. It is not visible as the weakness but I am finding out that it is just as, perhaps more, disabling as the muscle weakness. Dr C. forewarned me about this long ago and now it is becoming a reality. Much of what restricts me is the lack of enough energy not the muscle weakness. It is a one-two punch that is proving to be a difficult obstacle to overcome.

This one is a tough one to swallow and I guess if I dwelt on it, I could get depressed. Subconsciously, I understand this and although the world that I can physically interact with is continually contracting around me, I still choose to focus on what I can do. As I stated before, much of my journey, and life in general, is a matter of perspective. We can focus on our wants and cry, or savor our gifts and give thanks. Life is good. Yes, it is still very good. Please remember this, give thanks; it is such a precious gift.

Another Visit With Dr C.

We had another visit with Dr C and Linda the social worker today. An appointment at the medical office this time - drat! I was beginning to look forward to those lunch meetings, instead. Anyways, we sat and chatted, the four of us, for what seemed like an hour. Of course they touched upon all the pertinent questions of how we were doing and what was changing physically for me. But, I had a nice time with plenty of laughs and joking around, all that was missing was a cafe table, drinks and a waiter. It is so ironic that we go to these palliative care appointments and I have such a good time.

I do have a bit of good news to share but I do have to temper it afterwards; at the conclusion of our meeting, Dr C shared that I was doing very well and the progression has been slower than he expected. Wonderful news, the first bit of positive news regarding the disease since the diagnosis 10 months ago. Much as we enjoyed hearing this, however, Kathy and I are cautious. As I mentioned previously, I present well: I smile, stand straight, speak clearly and move about normally. I fool most and I wonder if I may have tricked Dr C a bit. Because, inside I feel the decline and it has been steady, more than my exterior reveals.

That said, it is good news because it is a reminder of how well I am doing. Back in spring I was expecting to be in a wheelchair by now. I was wondering then if I was going to make it to the Baja mission. Making it to the opening of the hospital this Dec 1 was also doubtful back then. So, all in all, although I am much weaker now there is much to celebrate; I am doing much better than I ever dared to imagine.

Thank you all for your prayers - God hears you; I am humbled by your love, thoughts and support. I am ever so grateful.