Not another day in paradise

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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.
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  1. Linda From Australia's Avatar
    Well good on you for blogging your thoughts. Hopefully you feel a bit better for writing it, because no-one close to you really wants to hear the same old story of feeling sick and tired. You are right, your son probably does know that you are laughing just to please him. I suppose your doctors are concerned about your mental health and that is why it was suggested to see someone to help you cope. But with the mountain for medical bills, it is hard to work out what appointments are a priority. I don't have any answers for you, but you have my ears. I am glad you had a nice Christmas, hopefully next year will be an easier Christmas for you
  2. predcheeks's Avatar
    thank you for sharing that! it made me feel much less alone in the morning agony of trying to get up but feeling completely exhausted! i just got a new coffee maker for christmas to keep in my hopefully the caffiene will help a little before facing the family! one day at a time..things will seem better again before you know it!
  3. serand4's Avatar
    I think I will call my pcp first thing tomorrow and see if I can get on Lexapro right away. This fatigue has got to be due to depression. If it's not, than I'm truly sicker than I think. I am definitely confused as to my diagnosis but I'm slowly taking that one day at a time. We'll figure it all out. In the meantime, I've got to find a way to get more energy so I can take care of the numerous bills and disability claims that need to be handled right away. If the antidepressents don't work, well, it will be time to try something else. Like one doctor said, it's just a process of elimination.

    Thank you for your support! I really do appreciate it. I'm just at a low point and we all know how hard it is to crawl out of those sometimes.
  4. Linda From Australia's Avatar
    Let us know how you went.
  5. SandyR's Avatar
    it's not easy admitting these feelings when they come along and God Bless you for being so open and honest about how you do feel. Your love for your son pours through your words and out of my computer screen. Good for you for not only recognizing how you feel but verbalizing it and seeking support for it as well. It's a tough road we are traveling on and please know - you are not alone. I'm praying for you.
  6. predcheeks's Avatar
    i think almost anyone with an autoimmune disease has been there..hopefully you'll get your meds figured out soon. i have no idea what kind of meds you are on but when i started feeling really depressed like that..the dr put me on a vitamen d supplement. it has been working really well. can't hurt to ask if you aren't already on it. praying for you.