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I'm tired of being tired......

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Chronic Fatigue Syndrome
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Posted 11/9/2006 2:33 AM (GMT 0)
Maybe I just need to vent.

Maybe I just need someone to take the weight off my shoulders. My husband is trying. He's going to college so that he can get a better job so that I won't have to work full time or so that I can work a silly job to keep me occupied. BUT I CAN"T WAIT THAT LONG!!

I'm so tired all the time. I can't wake up in the mornings. I dream all night and wake up in a sweat (different post somewhere on here) and feel like I have been hit by a truck.

Most mornings I can't keep my eyes open and don't feel like it's safe for me to drive. Then I get to work and can't stay awake or my headaches kick it and I sit there and suffer and try not to nod off.

I am so worn out. We can't afford for me not to work right now. We only have normal bills, no huge debt, but we wouldn't be able to survive on my husbands salary alone. And I hate the one day, I am going to have to depend on him to pay the bills. I want my independence back. I like working, I like contributing. I can't even make dinner. I'm so tired of the guilt.

I just can't work full time anymore. Yet I don't have a choice and I am so tired of pushing myself. It's wearing me out even more.

Having health problems is causing me to have HUGE insecurities that I didn't used to have.

I worry that I am going to lose my job, that I have had for 5 months and I like my job. I am good at it. It gives me a sense of accomplishment because it's my only accomplishment.

I worry that my husband is going to get tired of me and leave me. Even though he is so wonderful to me and he takes care of me, never complains, but I continually need his assurance that he's not going to leave me. We've been married for 6 months and he's the best thing that ever happened to me. And I would hate to loose him because my body isn't work correctly. We don't even really know what is causing my health problems.

I am tired of living in fear. I am tired of being scared that my doctor is going to drop me. I am tired of taking meds. I am tired of being tired. I hate all the unnecessary worrying that I do.

I am to the point in which I feel I just can't work anymore. But the world isn't stopping just because I am worn out and physically hurting. Something has to give.

My husband is looking hard for a better job. We are talking about alternative ways for me to bring in income in the meantime, but in the meantime I have to work. I might talk to my manager about maybe working part time. I wish I could work from home. I am going to see if it's an option.

I went to the doctor yesterday to talk about my new symptoms, the night sweats, the fatigue, the stomach pains, I overheat really easily and am just miserable all the time.

I just want to crawl into bed and pull the covers over my head and hide forever.

They took 7 viles of blood from me and are testing me for everything, Lyme disease, testing my liver, blood count, all sorts of rare, scary things. I get my results back in 10 days am will go in to follow up. Maybe I can finally get an answer to my condition that is getting worse. Maybe I will get lucky and there will be a treatment.

I just want to live a "normal" life, I want to be a good wife, a good employee, family member, friend, etc. I just want to feel normal and pain free, fatigue free.

*Thanks for reading....I'm hanging in there...

Posted 11/9/2006 3:26 AM (GMT 0)
  It sure feels good to vent,doesn't it. no one deserves to feel the way we do, especially someone who has a new husband and a life. i hope that you realize how lucky you are to have someone who loves and cares for you. it can make all the difference in the world. even with your insecurities, the love and companionship you receive give you moral support. i would do anything to have someone to understand and care about the way i feel. i'm so desperate tonight i have to ramble on; i hope you don't mind. the ringing in my ears is driving me nuts it's so loud. i'm in pain from head to feet, and yes i mean both feet; i can barely stand and walk. my back is refusing to give me a break, i can't sit comfortably, stand or even lay down. i tried to go to bed, but the pain's too much. my neck's throbing and i feel like a turtle who's trying to pull my neck into my shoulders. my energy level is about the level of most dead people. i just can't handle this much longer, i gotta get some restfull sleep. this 3-4 hrs a night is killing me. i've got problems getting an ensure down with my supplements much less have an appetite to prepare a meal and eat it. if i didn't have an alcohol intolerance i'd get drunk so i could sleep without pain. the only reason i'm still here is my dogs; they've never hurt me so i can't do that to them. i'm on the verge of tears the pain's so bad. i just want to feel normal one day so i can remember what it's like. is that too much to ask for. i didn't ask for this illness(none of us did) it was hereditary. i can feel the depression clouds building up, but i'm helpless to stop them. to be 53, alone and in this condition is heartbreaking. i'm at the end of my rope and i don't know what to do. i'd do anything to have someone to hold me and ease some of my pain. do you realize what you have now. do you see how lucky you are. i know it's hard for you to see, but you do have something to be thankfull for. i'm not complaining, this is my life. i have to try to accept it. but i'm having a really hard time right now. there's a part of me that just wants to take every pain pill in the house to try to get some relief. i can't let myself go there. if you believe in God, thank him for what you have, and ask Him to give me the strength to keep going. thanks for listening to this old fool. i really don't want to give up.

,

Posted 11/9/2006 3:18 PM (GMT 0)
Jwalter, I'm sorry to hear about all that you are going through. I truly hope that when you get your lab results back that the doc has some answers for you and you can start on some type of treatment which will hopefully help you function better. I can truly relate to the feelings of insecurity. My hubby and I have been married 13 years but I was healthy and fit and active when we got married. Now due to the severity of my illnesses along with the meds I take, I have gained a significant amount of weight and can barely tollerate any exercise. I don't feel like I'm the same person my husband married. Luckily we are very good friends and we talk a lot and he assures me that he still loves me, although I have no idea how he finds me attractive right now. I had to quit my job a few months ago and although it has helped my health it is tough financially and we are still trying to adjust. Hang in there and vent anytime you want to. We are here for you. Please let us know what you find out about your labs. TDLonely, my heart continues to go out to you and I will say a prayer for you. I'm so sorry that you are suffering so much and that you feel so alone. I'm glad to see you posting here and I hope it helps.
Posted 11/9/2006 5:32 PM (GMT 0)
TDLonly1, I am so sorry that you are in the position that you are in. I don't know what your situtation is, but don't give up. Things happen for a reason and sometimes it's hard to see what that reason is.
I thank God everyday for my little life. But I can't help but want more out of life. Maybe that's selfish.
I have two cats. I rescued their mom from a crack house. She was pregnant. She had 6 kittens and died the next day. It broke my heart leaving the vet without her. I left my kittens at the vet for 2 days so I could figure out what I was going to do. My doctor released me from work for 6 weeks and I went and got my kittens. The vet said not to expect all of them to make it. But they did. My mom has two, my nurse has two, and I have two.
It's amazing how intune they are. They known when I am in pain or sad. They offer unconditional love and great comfort. Depression comes and goes, but I don't ever want to die because no one would love these critters as much as I do.
I can't wait for my test results to come back. It's frustrating when they come back showing nothing. I mean, I don't want anything to be wrong with me, yet I hate living in the dark having all these crappy symptoms and not know why. I figure if they could put a name to it, maybe they could find a solution.
Posted 11/9/2006 5:42 PM (GMT 0)
Jwalter,

   Can you tell us when this all started?

 

Posted 11/9/2006 7:26 PM (GMT 0)
It started when I was 23 or 24. I was in college, and taking a kickboxing class, which I loved! During one of my kickboxing classes, I got a sharp pain in my stomach, that took years to get rid of.

My OBGYN doctor couldn't find anything wrong with me and sent me to a stomach specialist. (Can't remember what they are called.) I actually saw two different stomach specialists. They ran all sorts of tests of me and only concluded that I have a slow draining stomach. I went to these specialists for 2 years.

A friend of mine was having stomach pain similar to mine and told me about Endometriosis. I talked to my OBGYN and she refused to look into it. She said that the only way to see if I had it was to cut me open and she wasn't going to do it.

So I went to my friends doctor, had the surgery, had Endometriosis! and the stomach pains went away after the surgery. But the headaches didn't go away. Along with pain, I started having fatigue problems. I did the sleep studies and they showed that I don't fully cycle. I go from stage 1 to 4, meaning I dream all night and don't get any rest. So I wake up feeling like crap and I'm always drowsy and tired.
My muscles in my face, neck and back ache. And I am always stretching out my elbows. They feel achy. I have weird aches and pains.

So "normal" is chronic fatigue, headache, migraine and depression. I can usually keep these problems under control.

The past couple months, I have been waking up dripping wet in sweat. I feel nauseus, and like I have the flu. I dream all night, sometimes good dreams, sometimes not. And the fatigue is getting worse. I have little spirts of energy and then I just drop. I am going through pajamas like crazy. Even if I just take a quick nap, I wake up sweating and soaked.

(I looked up the symptoms of Lyme Disease and I have almost all the symptoms. So I am interested to see if I have that.)

I have looked into everything, TMJ appliances, ENT's, therapy, pain management, acupunture, diet changes, lactose/gluten tests, 2 scopes each end twice, CT's, MRI's, CT for deviated septum, allergies, post traumatic stress, narcolepsy, neurologists, etc.

I think the new stuff is my hormones or maybe thyroid. I am too young for menopause. My "monthly friend" has always been irregular. I try not to have one and take my birth control back to back. But last time it came and lasted 3 weeks. When I get my monthly friend, my pain gets unbearable and the migraines are terrible. Thank God for Maxalt!

I have been the same weight since high school. Last year I gained 30 pounds!! I have lost some of it, but am still 25 pounds more than I usually weigh.

I can't believe how fast I put on the weight and it's really hard to loose since I am too tired or in too much pain to exercise. I try to take walks at home, I park at the end of the parking lot at work so I have to walk farther, I take the stairs and such.

Oh, I also feel really hot. Like a fever or the feeling when you break a fever. It's bizarre.

That's what's going on. It's a mystery!
Posted 11/9/2006 7:54 PM (GMT 0)
Wow, that is a lot.

What I would tell you though, is even if your Lyme test does come back negative, look into getting a LLMD (Lyme specialist).  You might want to check out the lyme forum for more info on that. 

Posted 11/9/2006 9:00 PM (GMT 0)
Jwalter, go ahead and vent.. it's necessary when going through this. I get frustrated myself reading your history because it sounds so much like what most of us have gone through.. the circle of doctors each handing us off back and forth and then sometimes running into doctors refusing to look into something.

I've often wished myself that I had cancer so I could say "Ah! That's what it is.. now I can tell people and they'll understand, and now I know what I'm fighting." This fatigue and other associated symptoms are so frustrating in every way.

All I can say is keep fighting and don't give up. Use this place as your resource to vent and ask for help and support when needed. We're all in the same battle together to get back as much possible of our previous self.
Posted 11/9/2006 9:02 PM (GMT 0)

sparker said...
Jwalter, go ahead and vent.. it's necessary when going through this. I get frustrated myself reading your history because it sounds so much like what most of us have gone through.. the circle of doctors each handing us off back and forth and then sometimes running into doctors refusing to look into something.

I've often wished myself that I had cancer so I could say "Ah! That's what it is.. now I can tell people and they'll understand, and now I know what I'm fighting." This fatigue and other associated symptoms are so frustrating in every way.

All I can say is keep fighting and don't give up. Use this place as your resource to vent and ask for help and support when needed. We're all in the same battle together to get back as much possible of our previous self.

Well said! yeah
Posted 11/9/2006 9:19 PM (GMT 0)
Thanks for your support.
It's nice to have somewhere to turn to.
My worst fear is that I will lose my husband. I don't think he will give up on me and I know that he loves me and enjoys taking care of me. He's my angel. But I have had past boyfriends that just couldn't deal with it. My husband is different though and I am lucky to have him. I just don't want to lose him. Or my job. I talked to my manager because I have missed alot of work this week and stayed home today and she seems to be understanding. I guess I just have to stop worrying and whatever happens happens. My husband and my job keep me going and give me hope. I am going to look into different employment options. Maybe there is something that I can do from home. Or maybe I can work part time at work until I figure out what these new symptoms are.
Thanks to everyone that has replied to me. It's nice knowing that I'm not alone.
Posted 11/9/2006 10:05 PM (GMT 0)
Well, I certainly understand your worries, but don't let them overwhelm you and sap the little energy you have. I'll share my personal experience, which you can use hopefully. I was the same way (except with my fiance). I started getting sick a year into our engagement and plans for the ceremony.

At first, I just thought I was tired and just needed some down time, so avoided "active" activities. But over time, I realized it was something more pervasive. I began to worry that my fiance wouldn't understand and that she was getting tired of "carrying the load" for us being together both financially, emotionally and mentally.

I then started worrying more and apologizing more and feeling worse that I wasn't the person I was when she met me. I was reading her mind that she was getting tired of me, and that she wanted me to get better and all this..... in the long run I spent a fair majority of my time worrying, apologizing, thanking her and then finally pushing her away. I was so sure she was leaving that I pushed her away - and eventually she did.

BUT.... had I been listening to her and what my friends were saying, she would have stuck with me through it all. I spent so much time reading her mind that I didn't spend the time to talk to her.

I think in hindsight, had I diverted all the energies I spent in worrying into things like finding doctors, reading about illnesses, eating well, sleeping well and just communicating with my fiance, things may have turned out differently.

So... not knowing your and your husband, all I can say is trust that your marriage is based on love and not just a vow. Ignore what past boyfriends did, that's why they're past. Be open with communication and allow him to understand you're fighting for your health. Maybe printing posts from others of us here who are struggling so he knows there are others having identical vague problems. Then keep fighting to find the source of the problem.

Wow.. I really rambled here didn't I. I apologize.
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