Sick and Tired

I am sick and tired of being sick and tired. I start almost every day feeling this way, feeling the hurt and struggle, feeling the frustration of getting up, the challenge of going to the bathroom, the difficulty in getting dressed. Then I go to make coffee and I feel it all over again. My day has just begun and I am finished.

My shoulders hurt from the struggle of lifting up and down. My hands hurt from the work of pushing and pulling. My neck hurts for no reason at all, it just hurts. By the time I get up, go to the toilet, get dressed and get coffee, I am ready to go back to bed again. My knees hurt from inactivity, from sitting in the chair all day and sleeping without motion in my legs all night. My feet hurt from swelling.

My energy level plummets after any activity. Even doing fun stuff is tiring. The effort of being positive, upbeat, enthusiastic and lively takes its toll. Someone recently said to me "Other than the wheelchair, you look great." Trust me, you can see the outside but you cannot feel the inside. None of use lives in another person's skin; we know only our own pains and struggles, not those of our compatriots.

The problem is that it may not be ALS that takes my life. In addition to the struggles with this nasty disease, I have the same struggles as everyone else. I might get hit by a car or I might have a heart attack. Cancer may strike me down or I might simply fall down and hit my head, assuming I could stand in the first place. Oh, and nobody will sell me life insurance.

I am sick and tired of being sick and tired but I am not sick and tired of living. That's part of what makes this such a shitty deal. I want to live. I want to have a life. I want to walk in the sun, ride beside the river bank, hike through a forest, stand on the foredeck holding the shrouds and feeling the wind. I can do none of these things in the ways of "normal" people. Yet, in addition to my lost abilities, I must also face the normal challenges of life and death.

Normal challenges would be wonderful. To simply pay the rent without having to budget for a timeline, to simply go shopping without having to worry about things on shelves that are too high for me to reach from a wheelchair, to simply have a shower standing up, to simply do laundry without the struggle of wheeling up and down the hallway, through doors while holding onto an overfull basket; normal challenges would be a gift. To live and die in a normal way, this is all I ask for yet it is not what I have been given.

It is simply oppressive some days, like dark clouds heavy with rain and the threat of storms, covering my horizon, blanking out the joy of a clear blue sky. The sense of inevitability, of certainty. Human brains are not made to work this way. Our brains are not made to contemplate the finality of life. If we all did that, none of us would accomplish, none of use would strive, none of us would aspire.

I want to live before I die. Some days it is more of a struggle than others. Some days I really am sick and tired of being sick and tired, like today.