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    Old 09-05-2007, 09:06 AM   #1
    JoInUtah
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    Has your fatigue caused you to lose friends?

    My friends and I would spend a lot of time together but now I never see them. It happened slowly over the past year but I know it is because every time they call to invite me to do something, I am too tired. Now they just don't invite me.

    I don't think they understand how utterly exhausting this is. I'm not just tired after a day's work, I am beat! They have said, 'we can *just* do dinner and a movie.' Sure, we park at the mall, walk for a mile, eat, walk around for an hour before the movie and then walk back to the car. I was barely able to make it and I spent the next day in bed.

    And don't even get me started on my husband. He doesn't understand either.

    How have you maintained friendships? I feel like the fatigue is ruining my life.
    Jo

     
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    Old 09-05-2007, 09:55 AM   #2
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    Re: Has your fatigue caused you to lose friends?

    i know what you mean and it is super hard! People really do not get it. For us (my husband and I) we found activities that we love though. He plays the guitar and i am a cellist. Music is so fun so he is teaching me to play bass then we goof around together. Also we have a theater in our basement so friends and family can come over and watch movies with us on days i am too fatigued to go anywhere! it is perfect. movies and pizza. I think the trick is being creative. Staying positive and being creative. Last night we have a fabulous time watching 300 right in the comfort of our own home!!! The last thing on my mind was wow i am tired!!!

     
    Old 09-05-2007, 10:23 AM   #3
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    Re: Has your fatigue caused you to lose friends?

    Samigirl,
    I think you are right, I need to be creative. I've been a little sad that I can't do the things I 'normally' do but instead I just need to create alternate activities.

    I'll also need to let go of my perfectionist tendencies or maybe hire a maid. My house has become a little cluttered in the last couple of months and I can't imagine inviting people over in its present state of disarray. Maybe I'll bribe my teenagers.

    I noticed you are in Utah too. Nice to 'meet' you!
    Jo

     
    Old 09-06-2007, 05:37 AM   #4
    moommin
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    Re: Has your fatigue caused you to lose friends?

    Quote:
    Originally Posted by JoInUtah View Post
    My friends and I would spend a lot of time together but now I never see them. It happened slowly over the past year but I know it is because every time they call to invite me to do something, I am too tired. Now they just don't invite me.

    I don't think they understand how utterly exhausting this is. I'm not just tired after a day's work, I am beat! They have said, 'we can *just* do dinner and a movie.' Sure, we park at the mall, walk for a mile, eat, walk around for an hour before the movie and then walk back to the car. I was barely able to make it and I spent the next day in bed.

    And don't even get me started on my husband. He doesn't understand either.

    How have you maintained friendships? I feel like the fatigue is ruining my life.
    Jo

     
    Old 09-06-2007, 06:00 AM   #5
    moommin
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    Re: Has your fatigue caused you to lose friends?

    hi first post for a long time,taking iron for ten months for iron deficiency i feel a lot better now but still have my days with fatigue,but i know what you mean about friends,at work a friend said that i was a hypercoundriac,that hurt alot,it came to the point where i wouldnt say anything and just tried to make it through the day,i also have anxiaty apart from going to work,i find it difficult to go out alot of friends dont bother with me any more,i think they think im strange,and its hard for them to understand,well at least my iron stores are going up,you never know i might get the confidence i used to have and be me again shirley

     
    Old 09-06-2007, 07:02 AM   #6
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    Re: Has your fatigue caused you to lose friends?

    I was lucky my good friends were very understanding. The hardest part was saying things like I would love to go but I can't drive so if you could give me a ride I will do the best I can. Now when I got tired it took a very short amount of time and it was obvious that the on off switch confused them. Looking back they told me that they felt for me but didn't completely understand what I was going thru and did think I was a bit crazy. But when then noticed my personality coming back to normal that was the time true realization of just how hard this fight is came to them.

    I think for me it wasn't the friends that were the hardest part is was myself! I just hated having to ask for help, support and got tired of being tired. Once I found out the problem - accepted it - then realized I was in for the long haul I realized I best darn well enjoy the ride because it could always be worse (things became so much easier and life took on a new meaning).

    Now the GOOD NEWS - I am now on the other side of this illness and I learned from it how to take things in stride quite a bit slower than before but the wonderment of life is overwhelming. When you finally do start to get your life and energy back it's a wonderful feeling. I used to hate to exercise regularly but now it's been 6 months straight and I'm still not over the amazement of WOW I can actually do that, look I can make a muscle and what a wonderful feeling just to feel everything again. I thank God everyday even though it was a hard journey I learned so much. I have even greater passion for those suffering even despite my lack of understanding of it.

    I pray for all of you to have a speedy recovery and lots of love for the rest of your days.

     
    Old 09-06-2007, 09:31 AM   #7
    JoInUtah
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    Re: Has your fatigue caused you to lose friends?

    moommin,
    What your co-worker said was mean. I am so sorry. I sometimes wonder if people think things about me but just don't say them. I hope you regain your confidence as your energy improves!

    IamUnique,
    Your positive outlook is inspiring. I have let this really get me down, almost to the point of depression. I've just been waiting to feel better before I start 'living' again. I'm going to try to change my point of view and live each day...in some way, even if it is small. Thank you so much for your insight!

    Jo

     
    Old 09-06-2007, 11:26 AM   #8
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    Re: Has your fatigue caused you to lose friends?

    moommin, I agree that was a harsh thing for her to say. But don't forget they have their own problems to deal with. And right now you need to focus on yourself. I had a woman point blank tell me I needed to get off the drugs because obviously I was killing myself and I needed to take responsibility for my life and wasting it the way I was. I listened to what she said and this overwhelming feeling came over me. I knew that I have never done drugs and I knew that she would never believe me nor would she truly understand or care. I realized that it was only how I determined to look at my own situation that mattered. Others opinions where just (their opinions) and they had nothing really to do with me at all. I hope you feel better soon.

    JoInUtah, It's easy to get down and caught in the trap of what we can't do anymore. But your right when we realize that before the illness we took so much for granted. Now we learn how precious life is and that each day is a gift that we should live HERE and NOW.

    My ear is always here to listen, my shoulder to lean or cry on and my love and support freely given.

     
    Old 09-07-2007, 01:17 AM   #9
    moommin
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    Re: Has your fatigue caused you to lose friends?

    Quote:
    Originally Posted by IamUnique View Post
    moommin, I agree that was a harsh thing for her to say. But don't forget they have their own problems to deal with. And right now you need to focus on yourself. I had a woman point blank tell me I needed to get off the drugs because obviously I was killing myself and I needed to take responsibility for my life and wasting it the way I was. I listened to what she said and this overwhelming feeling came over me. I knew that I have never done drugs and I knew that she would never believe me nor would she truly understand or care. I realized that it was only how I determined to look at my own situation that mattered. Others opinions where just (their opinions) and they had nothing really to do with me at all. I hope you feel better soon.

    JoInUtah, It's easy to get down and caught in the trap of what we can't do anymore. But your right when we realize that before the illness we took so much for granted. Now we learn how precious life is and that each day is a gift that we should live HERE and NOW.

    My ear is always here to listen, my shoulder to lean or cry on and my love and support freely given.

     
    Old 09-07-2007, 01:19 AM   #10
    moommin
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    Re: Has your fatigue caused you to lose friends?

    iamunique how long did it take for you to feel better. shirley

     
    Old 09-07-2007, 08:04 AM   #11
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    Re: Has your fatigue caused you to lose friends?

    Shirley -
    I fought with the unknown problem for over 20 years and treated illnesses that I never really had in the first place. Looking back in 2003 my unknown condition Pernicious Anemia became stronger and I slowly depleted my liver supply of B12. It wasnít till 2005 that the real problems could be seen. With that said however, they were easily dismissed. I am an always on the go personality and required about 6 hours or less of sleep. In 2005 I couldnít budge my butt of the couch to save my life and was in bed before 8pm. Feb 2006 there was no denying I had a real problem. It took 6 months to figure it out what I truly had. I started the replacement therapy of B12 injections the last week of July 2006 and have been taking them every 2 weeks since.

    As far as feeling better Ė it was an on and off again process. It took about 4-6 weeks before the feeling of death disappeared then around 3 months the tremors I had subsided and the 14+ hours of sleep was now down to about 10 but still resting on the couch a lot. At six months I would say I was about 65% myself again and will be honest I was scared that it was the best it was going to get. For the next couple months I really couldnít see any huge differences. Then around 10 months a huge surge in energy came around and the visual problems got a bit better. Now donít get me wrong I wasnít running a marathon - YET. But I was surviving the day and now down to about 8 hours of sleep and slightly active to boot. At this point I decided to start walking on the tred mill. It was record breaking I survived all of 5 min before I had to stop. When I was taxing my system I could tell because I lost control and feeling in the right leg. It took me almost 3 months of daily effort to work up to 45 min of walking a day. This was the point where I picked one thing at a time that I wanted to retrain the brain to re-learn or adjust to. I had serious balance issues and a quick movement was a real problem physically and visually. I took up racquetball and chasing that darn little blue ball that never went where I wanted it to really helped. Today I walk at night in the dark so that I learn to depend on my body to tell me where I am without as much visual aid. Next is Yoga

    Today I still have some issues with the right leg and my feet, balance is off a bit when I am to physical or tired. But I have learned that I can find ways to compensate for these issues that remain. And just yesterday I realized that was the first time I wasnít chomping at the bit for my B12 shot prior to my designated day. I am not giving up on being better than I am today and I hope that you will not either. It has been a hard journey but one that I have chosen to learn allot from.

    Wishing you well.

     
    Old 09-13-2007, 12:26 AM   #12
    moommin
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    Re: Has your fatigue caused you to lose friends?

    Quote:
    Originally Posted by IamUnique View Post
    Shirley -
    I fought with the unknown problem for over 20 years and treated illnesses that I never really had in the first place. Looking back in 2003 my unknown condition Pernicious Anemia became stronger and I slowly depleted my liver supply of B12. It wasnít till 2005 that the real problems could be seen. With that said however, they were easily dismissed. I am an always on the go personality and required about 6 hours or less of sleep. In 2005 I couldnít budge my butt of the couch to save my life and was in bed before 8pm. Feb 2006 there was no denying I had a real problem. It took 6 months to figure it out what I truly had. I started the replacement therapy of B12 injections the last week of July 2006 and have been taking them every 2 weeks since.

    As far as feeling better Ė it was an on and off again process. It took about 4-6 weeks before the feeling of death disappeared then around 3 months the tremors I had subsided and the 14+ hours of sleep was now down to about 10 but still resting on the couch a lot. At six months I would say I was about 65% myself again and will be honest I was scared that it was the best it was going to get. For the next couple months I really couldnít see any huge differences. Then around 10 months a huge surge in energy came around and the visual problems got a bit better. Now donít get me wrong I wasnít running a marathon - YET. But I was surviving the day and now down to about 8 hours of sleep and slightly active to boot. At this point I decided to start walking on the tred mill. It was record breaking I survived all of 5 min before I had to stop. When I was taxing my system I could tell because I lost control and feeling in the right leg. It took me almost 3 months of daily effort to work up to 45 min of walking a day. This was the point where I picked one thing at a time that I wanted to retrain the brain to re-learn or adjust to. I had serious balance issues and a quick movement was a real problem physically and visually. I took up racquetball and chasing that darn little blue ball that never went where I wanted it to really helped. Today I walk at night in the dark so that I learn to depend on my body to tell me where I am without as much visual aid. Next is Yoga

    Today I still have some issues with the right leg and my feet, balance is off a bit when I am to physical or tired. But I have learned that I can find ways to compensate for these issues that remain. And just yesterday I realized that was the first time I wasnít chomping at the bit for my B12 shot prior to my designated day. I am not giving up on being better than I am today and I hope that you will not either. It has been a hard journey but one that I have chosen to learn allot from.

    Wishing you well.

     
    Old 09-13-2007, 12:52 AM   #13
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    Re: Has your fatigue caused you to lose friends?

    hi ianunique,20 years is a long time to be ill,i dont know how you came through it;i have felt ill for four years, dotors put it down to anxiaty,mine stated with head pressure and visual problems,constantly tired,and so on,three years later did full blood count,said ferriten was low,said due to heavey periods (fibroids) thats why ferriten is taking so long to go up,but i am still left with eye problems and head pressure i think the pressure is comming from my ear becouse that is where it starts,doc said it sounds like a nurve thing and put me on ammitripoline i think thats how you spell it, im going to ask him to look in my ear to see f this is the poblem i dont know what else to do, shirley

     
    Old 09-13-2007, 12:26 PM   #14
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    Re: Has your fatigue caused you to lose friends?

    Apparently my system until 2003 was able to bounce back and forth between anemia and not. I knew that when I felt bad I ate more steak and felt better. But in 2003 this process didnít seem to work anymore and I slid quickly down hill.

    I was treated several times for a strange pain in the back of my head (just where the neck meets the skull) the doctors said it was an old neck injury and I would have to live with it. Funny thing when my B12 #ís went up this pain went away. Now itís a bit of an indicator when I need B12.

    My neurologist doctor told me that the optical nerve is usually the first so show signs of damage and takes the longest to heal. Then my orthopedic specialist told me that there is a main nerve that comes up the back of your neck crosses over the ear and splits from there to the eyes and various other places. I didnít feel pressure but the side of my head was numb quite often, I had pain in the back of my right eye like someone was trying to push it out from the inside with a needle and my hearing was thru the roof (I had to wear ear plugs constantly). My hearing was so over pronounced I could plainly tell you the conversation someone was whispering 15+ feet away. And like you I was treated for anxiety more than once and each time I talked with the Doctors during my illness they all suggested I needed to seek counseling and that they really didnít think anything was wrong with me.

    Like you I was on a medication (for migraines) for about 5 months it slowed the electrical signals and receptors in the brain. This really helped because without it my head always hurt and felt like mentally I drank a case of mountain dew mixed with alcohol because even with my brain at warp speed I wasnít able to think straight at all. Eventually when my system was getting better the drugs did the opposite and made my whole body tremble.

    Have you gotten your ferriten, iron and B12 levels to a normal range yet? And what was the outcome of your celiac test. Curious on the celiac because I have it as well and can tell quite a difference in my mood and body every time I eat gluten.

    I look at this whole process like the best scientific experiment I have ever done (kind of like doing the science fair for school).

    Hang in there Ė keep your head high and always remember to live, love and laugh no matter where you are and what you are doing. We only get this trip once.

     
    Old 09-14-2007, 07:50 AM   #15
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    Re: Has your fatigue caused you to lose friends?

    i ammuniqe, hi last time i had my ferriten checked it was 32,doc said i could come off the iron,i had to remind him why i was on the iron due to heavey blood loss ,and wonted to stay on them till i get the fibroids sorted,so he dropped them down to one a day.my celiac test came back ok,i dont think the doc has tested b12,i ,was lucky they tested ferriten, would heavey bleeding make my b12 low? shirley

     
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