Sunday, December 28, 2008

The crushing fatigue continues. Sometimes it crushes my spirit as well. I lift myself back up literally and figuratively over and over again. I'm discouraged as it seems nothing I'm doing or have done is doing much good. I keep trying to tell myself I'm in a crash. It's just that it keeps going.

Christmas day was not one my favorite days. Daphne had so many pets to take care of and had to be away much of the day and into the evening. Around 5 I decided I couldn't take being alone in the apartment anymore so I got in my car and drove to the local cemetery. It's actually somewhat of a tourist spot and quite peaceful. It's only about a 1/2 mile away. I drove through the cemetery and had brought along my book. There were people milling about but the cemetery was getting ready to close.

I needed new thick socks so I drove another 3/4 mile to Long's which happened to be open until 6. I was feeling a little woozy but didn't want to go back to the apt. I made it to Long's. I picked out some socks, stood in line and congratulated myself on making it through a bout of wooziness while in Long's. As I left the store I suddenly felt disoriented forgetting where I had parked the car. I looked around and felt a bit panicky at not being able to find the car. Everyone has this sort of experience I know but it's a bit different when I have so little energy and had been battling wooziness. I saw my car over in the next aisle. I thought to myself almost cheerily-there it is! It's the one with the lights left on! Then I thought with a thunk in my stomach-oh no, it's the one with the lights left on. I didn't' think it'd be a problem since the battery was fairly new and I wasn't in the store very long. I was wrong. The car wouldn't start. I swear it's the same sound the cells in my body must make at trying to create energy. I panicked. There was no way I could walk home. I didn't know where Daphne was. There was no one I could call and Long's was going to close soon. To make matters worse I was dressed in HUGE sweat type pants-warm but huge. My hair was also huge.. And, I was wearing size 10 slippers (my feet are a size 8). People were in a hurry and quickly looked away as I approached them for help (they probably thought I was going to ask them for money).

As person after person looked away and hurried off I started feeling a sense of desperation. A van pulled up and a man and a woman got out, both clearly on crack and looking a bit scary. The woman had no teeth and kept staring at me. I realized what an easy target I was. Even though I'm quite street wise due to the work I used to do, I felt suddenly vulnerable. There's no way I could have defended myself should something happen. I felt incredibly alone and vulnerable and found myself bursting into tears. It just all suddenly felt so incredibly unfair. Can't something got right I found myself silently shouting at God who remains silent?

I turned toward my car with it's hood propped up in the hopes that someone would see I needed help. From behind my I heard a man's voice say "excuse me, ma'am-do you need some help?" I turned toward him tears streaming down my face. "yes-I do" I said in a trembling voice. "My battery seems to have died." He smiled. "No problem-I'm a mechanic and I have jumper cables in my car." He looked at me closer and must have seen the tears because he said "don't worry-it's going to be okay. I'll go get the jumper cables." As he jogged back towards his car a sob escaped me. I couldn't hold it in anymore. He hooked up the jumper cables which solved the problem. Then he was on his way. I put my head on the steering wheel and just sobbed. I hate being dependent on people. I hate being scared of people. I hate this illness. I hate what it's done to me. But I was very grateful for this man who happened to be in town visiting family.

Tomorrow I see my new doctor. I had to fill out some paperwork. I found it overwhelming thinking of trying to explain everything to the new doctor. I copied all my labwork, filled out the forms, prepared my questions (since I can't count on my memory), and copied the ssdi report that my csf doctor wrote. Then I made a list of all my medications and supplements. I find myself hoping that the doctor will be able to help somehow but even the csf doctor that I've been seeing hasn't been able to help.

I have nothing inspirational to write. I have no hope in my heart. Sometimes it's just like this. The only hope that I have is that tomorrow will be different.

I do have another symptom though. It seems that I now have tinnitus. It started after we moved here. It's been with me 24/7. Today I'm tired of it. There's things I can do like use my ipod but it's starting to drive me crazy at night when it's quiet except for the locusts buzzing in my head.


Renee said...

I am sending gentle hugs and warm thoughts your way today. I understand completely...

Paula said...

As long as we have hope,
we have direction,
the energy to move,
and the map to move by.
We have a hundred alternatives,
a thousand paths and infinity of dreams.
Hopeful, we are halfway to where we want to go;
Hopeless, we are lost forever. - a Hong Kong Proverb

Terri, keep faith that hope in your heart will return. Take these days as they are and remember that tomorrow is new, it is new, it is new. Your body has so much healing to do and it needs to retreat inward in order to do that.. honor this time..

Pris said...

Sometimes we just have to cry to let the feelings out. I remember driving to my chiropractor in a blinding haze. He was only a few miles away and I'd been there many times and knew the way by heart. This particular day I was going down a back road and suddenly had no idea where I was going or where I'd been. Nothing looked familiar. I panicked and thought about pulling over, then decided I'd never figure anything out. I just kept going and suddenly a big pink apt building looked familiar and it all came flooding back..'I'm going to Terry's. I'm coming from my house'. I parked in his lot and put my head on the steering wheel and sobbed.

I have a tom tom GPS now since I know I can get lost within 2 miles of my house. My driving range on a very good day is maybe 10 minutes. It's so reassuring to hear the tom tom say, 'In 500 yards, turn left...turn left, then get in the right lane'. 'Tom's' my new best friend:-)