Tired of Fatigue

I am tired. I usually have a good attitude, am pretty healthy, and thankful for that, but most of the time I am just tired. I am tired of having MS, tired of staying in most of the time, tired of taking medicine, tired of transferring from chair to bed and back again on a board, tired of sitting down. I am tired of being tired.

Once I read about a man who had MS. His wife and caregiver was healthy, a yoga teacher, and she was the writer. She said her husband stayed in bed most of the time, getting up in his wheelchair only every other day. When he was up, it was for only about three hours. Three out of forty-eight hours did not sound like much.

Now I have to admit, that is all I know. She did not say he was asleep most of the time, or he sat up in bed and had visitors or read or listened to music. She did not say if he preferred staying in bed or longed to be up. I jumped to that conclusion, thought he wanted to be up and about, but sadly, was unable to make that happen. I do not know how he felt, but I was looking at his life through my experience. I thought he was tired.  This was a couple of years ago. My experience has expanded a bit.

My tiredness has increased. At first my body was tired, heavy, slow --not all the time, but often enough and long enough. Few days, if any, escaped the feeling as time went by. Fatigue. I am not unique among MSers, nor am I even unusual. MS has so many different symptoms, and few are shared by as many MSers (80%) as fatigue. 

Now sleepiness has crept into the equation. My eyelids are so heavy they droop. For years, the pre-MS years, I couldn’t sleep. I would sometimes go weeks without a good night’s sleep. My doctor and I tried several things, usually drugs, but nothing worked,  Nowl the MS puts me to sleep. Irony, I guess.

I spend more time in bed than out of bed. The entire time is not sleeping. After an initial nap, I pull out my little laptop and write awhile before going back to sleep in the early morning. That is when I get my night's sleep. I need the tee-shirt that says "I don't do mornings" because I really don't. Breakfast time at my house is early afternoon.

I am embarrassed I get up so late, but I do, so I may as well just accept it. My day is very short. I say I have a small window of activity, but actually I have two activity periods during the day. One is in bed after a short nap when I write and watch taped TV shows. It is comfortable writing in bed. My adjustable bed holds my back up while my feet are also raised. I don’t have to worry about balance problems or reaching, and my little laptop is so small it fits just right. I don't feel so physically tired when laying down.

I actually enjoy my time in bed sometimes. In the morning I want to get up, even if I am warm and cozy. As I start trying to prop myself up to transfer to my chair for the day, I am tired again. Not sleepy, but tired. If I read the story today of the MSer who is up only three hours, I would decide he has bed activities like I do. Maybe it's not so sad after all.