Not another day in paradise
by, 12-28-2010 at 10:25 PM (651 Views)
It's another day of utterly pure, profound fatigue. The phone rings around 10:30am and I can barely move to get up and get it. When I do, the caller has already hung up. I can feel the tiredness hang around my shoulders like a rock-solid cape. I do what I always do, I grab a soda and pray that the caffiene in the soda will perk me up but it doesn't. Nothing does. My mom calls soon after and honestly, I'm not in the mood to pretend like I feel well. I want to go back to bed so I start the chain of lies. I tell my son that my mom isn't feeling well so I can't take him over there. He takes that well and goes downstairs to play on his Playstation. I head off to bed and sleep for another four hours. Fortunately I have enough energy to drive him over to one of his favorite take out restaurants so he gets something he wanted today.
I look at the house that I had in pretty good condition last week and I thank God that I got the presents wrapped and the tree up and was able to actually enjoy Christmas with the family. I guess I'm paying the price of that energy this week. I just can't believe how to-the-bone tired I am this week and I pray and pray that at least some energy surfaces in the next day or two.
It's been a hard month,no doubt. Whether I have Lupus or not is just a dot on the radar of concerns. People don't feel the way I feel when there's nothing wrong. And the cognative disfunction just continues to progress like the lead car in NASCAR. Today I needed to check my voice mail. I didn't have a clue as to what my phone number was. I'm so grateful for this huge calendar I bought a few months ago that helps me keep track of all my doctors' appts. I need to make a few more but honestly, I'm really tired of that aspect of this, too. We live our lives at the doctor's office and usually leave with more questions than answers. My latest psych doc asked why I don't see a therapist. I explained that I have over $15,000 in medical bills right now with little hope of getting them paid. These are the doctors that are working on finding out why I feel the way I do and frankly, I think they're more important than exploring my coping skills. And, of course, I'm three months behind on my house payments and my unbelievably expensive health insurance just went up. I'm hoping that my medicaid comes through soon. I have full cooperation from all my doctors but time is never on my side. It's as if our government wants all of us sick people sitting on the sidewalk panhandling for food. It's not so unrealistic.
Again, I would never commit suicide. It would devastate my son and parents but I can totally understand why people in this position do. I have less than no energy and even fewer answers as to why I don't. I'm usually a very perky, silly person who loves to laugh but laughter takes too much energy right now. My poor son probably doesn't even recognize his own mother. He'll try to make me laugh and in return, I'll try to laugh with him but it's fake and contrived and he knows it. My mom keeps our phone conversations short because I have so little to say. Who wants to talk about illness all the time. And trust me, I dont' even look like myself anymore. Yes, I know I'm puffy (thank you to all the doctors who point it out) and my eyes are sunken with pink circles from the blood in my my sinuses. I wear long sleeves because of the bruises that appear out of no where. And the good ol' malar rashes -- they've become far more regular and I have no idea why. After all, I'm not supposed to have Lupus! I need to make the appts for the GYN to rule out cancer and I will. I'm just so tired! I want about three days to just curl up in bed and sleep some of this despair off. Of course, that might land me in the hospital in the psych ward. Hey, if they'd let me sleep, I might just support that decision.
Sorry for being such a downer. I'm just too tired and too uninformed. I feel like a failing mother because I just can't get the energy to do anything fun with my son and he's a really cool kid. I'd say it would do me good to have him and his friend come hang out but the thought of pulling together meals and listening to a lot of talk is almost like torture right now.
Take care and I will continue to blog in hopes that dumping all of this down on the computer gets it out of my head. I just feel like I'm in a dangerous place with the fatigue and the pain and by typing it all in a blog I can in some way control the affect it has on me. Have a good week folks. I'll keep you posted.