Monday, September 29, 2008
Tired
My body is still very run down. I've been sleeping 16-18 hours per day, and not really able to do very much during my awake time. Even simple daily activities such as getting to the bathroom or changing my clothes leave me weak and winded.
Friday, September 26, 2008
The day after
My day started at 5am. By about 8:30am I was ready to go back to bed.....tired, achy and very weak. I rested for a while but couldn't sleep....finally got up around noon. Since then I've been looking through old photos and browsing the web for a USB driver for my dad's camcorder. I'm very worn out and mentally dopey (what I like to call "stupid-tired") but too uncomfortable to sleep just yet. Every joint in my hands and arms ache.....my leg muscle are restless and jumpy. I might take some extra Valerian root tonight to help me relax.
Thursday, September 25, 2008
A bad day
I made a mistake yesterday, and overestimated the amount of activity my body could endure. I had taken the bus to a nearby appointment. On my way home I decided to walk across the street to the grocery store for some rice milk before walking the 2 1/2 blocks back to the house. I should have gone straight home after stepping off that bus..... I was already exhausted and out of my mind.......
I wandered through the store in a daze...my steps short and uneven. I was looking for something, I just couldn't remember what. I finally stumbled upon 'it' while wandering down the cereal aisle.....rice milk! that's what I had come here for. I pulled a half gallon off the shelf and cradled it in both arms as I shuffled my way to the register. As I reached the end of the aisle, my exhausted and delirious mind decided I should buy some turkey too, so off I staggered - like a zombie - to the deli section. The trip back to the register is a blank. I have no idea how I got there. Perhaps the chill from the hunk of frozen turkey, which by then was burning the fingers off my left hand had kept me lucid enough to find my way back. I paid for my things and headed out the front doors....I needed to rest so I sat on some crates next to the door that had been left as part of a display. I was so tired...my whole body ached. I pulled my cell phone from my purse and dialed my friend Steve....as it rang I began to cry. I sobbed into his ear as he listened and calmly reassured me that everything would be alright. After a few moments I tried to stand again to see if I could make it home.....still on the phone I inched my way across the parking lot. About half way to the street, every cell in my body suddenly screamed in unison: "SIT!!" Like a well trained dog I immediately parked my butt on the asphalt and wept - defeated - into the receiver. I just could not walk one more step. I felt utterly helpless.....I bawled to Steve "I can't do this...." His voice of reason broke through the fog in my brain...."Can you call someone for a ride?" I hadn't thought of that...I hadn't thought of anything really, my brain was such a murky, confused mess. I hung up, blew my nose, and tried my best to sound calm and collected as I dialed my dad's cell. Luckily he was just a few blocks away and came by several minutes later to pick me up. I slowly hoisted myself into the truck and fought hard to hold back tears on the ride home. Once there, I slid out of the passenger door onto my feet and stumbled to the porch, but that first step was so hard....I gripped the wrought iron post to help my weakened legs make it up the 6 inch step. As I got up there and set both feet on the concrete I could no longer keep my composure...I dissolved into a puddle of tears. My dad was right there and wrapped his arms around me....deep sobs racked my body as my tears drenched his shoulder and blubbered "I hate this disease....I just want my life back!" He helped me to bed where I stayed for several hours, crying on and off. I called Steve back to let him know I was home safe and talked with him for a bit between sobs. After our conversation ended, I kept dialing friends and stayed on the phone til my battery was almost dead...I didn't want to be 'alone'. Sometime that afternoon, exhausted from crying and talking, I fell dead asleep.
I am still very weak today and moving is still difficult. I have pain in every joint from the waist down. The good news is that I'm not crying anymore and am still holding onto hope of having a semi-normal life one day. That's all for now. Ciao!
I wandered through the store in a daze...my steps short and uneven. I was looking for something, I just couldn't remember what. I finally stumbled upon 'it' while wandering down the cereal aisle.....rice milk! that's what I had come here for. I pulled a half gallon off the shelf and cradled it in both arms as I shuffled my way to the register. As I reached the end of the aisle, my exhausted and delirious mind decided I should buy some turkey too, so off I staggered - like a zombie - to the deli section. The trip back to the register is a blank. I have no idea how I got there. Perhaps the chill from the hunk of frozen turkey, which by then was burning the fingers off my left hand had kept me lucid enough to find my way back. I paid for my things and headed out the front doors....I needed to rest so I sat on some crates next to the door that had been left as part of a display. I was so tired...my whole body ached. I pulled my cell phone from my purse and dialed my friend Steve....as it rang I began to cry. I sobbed into his ear as he listened and calmly reassured me that everything would be alright. After a few moments I tried to stand again to see if I could make it home.....still on the phone I inched my way across the parking lot. About half way to the street, every cell in my body suddenly screamed in unison: "SIT!!" Like a well trained dog I immediately parked my butt on the asphalt and wept - defeated - into the receiver. I just could not walk one more step. I felt utterly helpless.....I bawled to Steve "I can't do this...." His voice of reason broke through the fog in my brain...."Can you call someone for a ride?" I hadn't thought of that...I hadn't thought of anything really, my brain was such a murky, confused mess. I hung up, blew my nose, and tried my best to sound calm and collected as I dialed my dad's cell. Luckily he was just a few blocks away and came by several minutes later to pick me up. I slowly hoisted myself into the truck and fought hard to hold back tears on the ride home. Once there, I slid out of the passenger door onto my feet and stumbled to the porch, but that first step was so hard....I gripped the wrought iron post to help my weakened legs make it up the 6 inch step. As I got up there and set both feet on the concrete I could no longer keep my composure...I dissolved into a puddle of tears. My dad was right there and wrapped his arms around me....deep sobs racked my body as my tears drenched his shoulder and blubbered "I hate this disease....I just want my life back!" He helped me to bed where I stayed for several hours, crying on and off. I called Steve back to let him know I was home safe and talked with him for a bit between sobs. After our conversation ended, I kept dialing friends and stayed on the phone til my battery was almost dead...I didn't want to be 'alone'. Sometime that afternoon, exhausted from crying and talking, I fell dead asleep.
I am still very weak today and moving is still difficult. I have pain in every joint from the waist down. The good news is that I'm not crying anymore and am still holding onto hope of having a semi-normal life one day. That's all for now. Ciao!
Wednesday, September 24, 2008
One step forward, two steps back
The semi-human feeling I had yesterday morning didn't last long....maybe 2-3 hours before I returned to a state of woozy, weak cotton-headed misery. I spent the afternoon resting and conked out at 6pm. I'll be glad when this is over. Right now I'm trying very hard to be patient with my body and just do what I can each day and not worry about the rest. One day I'll finish painting the walls, building my table and sewing my curtains, but right now I have a more important task at hand...taking care of me.
Tuesday, September 23, 2008
A little better
Good news today. I slept for 14 hours and actually woke up in the 'morning'...hehe. 8am! yay!
I'm walking a little better and don't feel so woozy....I started feeling slightly better yesterday after I had some liver. So I had some again for breakfast this morning and I'm feeling semi-human. My brain also seems to be waking up a bit.....not so much cotton in there ;-) I'm going to start on some long overdue paperwork and may write some more later. Ciao!
I'm walking a little better and don't feel so woozy....I started feeling slightly better yesterday after I had some liver. So I had some again for breakfast this morning and I'm feeling semi-human. My brain also seems to be waking up a bit.....not so much cotton in there ;-) I'm going to start on some long overdue paperwork and may write some more later. Ciao!
Sunday, September 21, 2008
Hangin' in
I've been feeling steadily worse since writing my last post. My time is spent taking meds and lying in bed sleeping on and off. Tonight I got up to use the bathroom and was shaky and out of breath when I got back to bed. Again, I expected this, so I'm just riding it out......hopefully this is the worst of it and I'll start feeling better soon. I doubt I'll return to posting daily for a while yet, but will try to post as often as my health allows.
Wednesday, September 17, 2008
Worse
I am worse today than I have been in a long time. Very weak and easily exhausted. I spent the entire day in bed asleep....woke for 'breakfast' at around 5pm, then went back to bed, as the activity of nuking some scrambled eggs and eating them wore me out. After two more hours in bed, I got up.... I just couldn't stay there any longer without going nuts. I still feel pretty rotten and am having trouble keeping my balance - I weave and bump into walls etc - but my mind needs input/activity. Even if it's something as simple as sitting here writing this blog...I have to DO something.
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