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Old 05-28-2008, 05:02 AM   #1
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Join Date: May 2008
Location: Brisbane, Qld, Australia
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jackiegirl77 HB User
Smile Sick of people not understanding my illness

Hi all.

I've just joined this site out of desperation.

Tonight, I had one of my many fights with my partner of 8 months about crap really, but we had a real doozy when he suggested that I "switch my fatigue on and off". He truly does not seem to believe me when I tell him that I have good days and bad days. He also does not understand my moods either. He also tried to suggest that he thought that I could get on top of my illness properly if I just, "looked after myself" or ate better, or not drank etc. etc. He does not get that sometimes I just want to live like everyone else in the world.

I am so sick to death of trying to explain this damn debilitating illness to people. I have become very hard (as opposed to my once sensitive nature) as a result of people trying to suggest that I brought this illness on myself. My boyfriend is one of many, many people that have said this, and quite frankly I am at the point where I have had enough of his judgements and the judgements of others, and I just want to tell everyone to go away and leave me the hell alone. I'd rather be alone for the rest of my bloody life that have this constant battle, but I'm also torn because I want to have a fulfilling relationship like normal people too.

Can someone please help!!! If there is anyone that has gone through this stuff like me (i.e. constant tiredness, irritability, days of relatively high levels of energy & then total slump days), then please, please can you reply to my post. Can you please explain that like me, you are not darn well faking, and you've just got to do what your body wants to do. Also, that like me, to be able to overcome the depression of being quite restricted in what you can do due to your constant tiredness, you break out every once in a while (i.e. have a few too many drinks) and to heck with the darn consequences if you have a moment of normalcy [please note: this is only an every now and again occurrence, not all the time].

I'm hoping that maybe, if people reply to this thread, I could maybe make a last ditched attempt at recovering whatever is left of this relationship that has broken down so early due to this damn stupid illness.

Plllleaaasseeeeeeee reply!!!!!

Thanks all.

 
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Old 05-30-2008, 07:12 PM   #2
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Join Date: Apr 2008
Location: Williamstown, WV
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apk41473 HB User
Re: Sick of people not understanding my illness

Dear Jackiegirl77,
Trust me I feel your pain. I have had these issues for almost 5 years. Many people have the same symptoms but can be many different things. I have been tested for everything.
But know this YOUR NOT ALONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!1

 
Old 05-30-2008, 07:22 PM   #3
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Join Date: Apr 2008
Location: Williamstown, WV
Posts: 6
apk41473 HB User
Re: Sick of people not understanding my illness

Dear Jackiegirl77,
Trust me I feel your pain. I have had these issues for almost 5 years. Many people have the same symptoms but can be many different things. I have been tested for everything.
But know this YOUR NOT ALONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!
Have you had any testing done. If not, you should start, this is one more step to finding out your problems. I, after many years, have been diagnosed with Chronic Fatigue Syndrome. I am constantly dizzy 24/7, can hardly drive and I have a son. I also have an anxiety disorder. And I also have severe allergies and I get shots every week. And my doc told me recently I am very low in potassium....Could this be the problem??? Don't know.

I know how frustrating this is and believe me you need only love and support. And any negativity you should keep away.
My suggestions would be to get any testing done with your doc....Full blood test, hormones, cortisol levels and sugar levels. Have an MRI and CT. Go to a ENT and have your ears checked out. If you've done all of this then you may be in the same boat I am...I believe now this is mainly due to stress and anxiety....Right now, I'm on a low dose of valium and I am working on helping myself...The docs haven't helped. But you may have a problem that can be helped medically..

Just know again there are so many of us and your not alone. Be vigalant with your docs and good luck with everything.

Take Care
APK

 
Old 05-30-2008, 10:09 PM   #4
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Join Date: Apr 2008
Location: Erie PA
Posts: 12
shalyn1677 HB User
Re: Sick of people not understanding my illness

Dear Jackiegirl77 - I'm afraid I cannot offer you any help, but I can offer you a sympathetic ear. I too have no one I can turn to. I try to tell someone I am tired - they say to get some exercise. They don't understand when I say tired - I mean, dragging, batteries dead, eyes almost shut, ready to fall over, dead tired. No matter how I say it - they don't understand. And, though I hate to say it - most of them chose not to.

In fact, my own mother said to me the other day that since there is no actual "test" to prove it exists - then it doesn't exist. Nice, huh?

 
Old 05-31-2008, 09:35 PM   #5
Junior Member
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Join Date: May 2008
Location: iowa
Posts: 20
figmo HB User
Re: Sick of people not understanding my illness

I like a lot of others can understand what you are going through, I have fibro and several other problems but they are not important, I actually get so tired that I can sit and be talking with someone and fall asleep, I almost always fall asleep when I am in the bathroom, I have been known to be sitting here typing a reply and fall asleep, it is a horrible feeling and I just get by one day at a time, they don't seem to have anything to give you to make it better, or if they do, my doctors have failed to tell me about it, at times I have insomnia but they have pills for that.
Keep your chin up and remember there are a lot of us out here in the same boat, I hope you can get some relief soon.
God Bless.

 
Old 06-03-2008, 01:25 PM   #6
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Join Date: Jun 2008
Location: Denver, Colorado, USA
Posts: 2
stayingpoz HB User
Re: Sick of people not understanding my illness

Jackie - Boy, do I understand. I was just talking to a friend this morning, crying, saying that it felt SO lonely to have chronic fatigue. No one ever really understands. They may try their hardest at times to be supportive, but I know they don't really] get it. You know? My dad even thinks this is all "in my head" - and he is super supportive about everything else I do. So, I guess I want you to know that you are not alone.

I think one of the smartest and best things you can do is look around at these forums when you feel alone and confused. I have felt like a giant loser at times - I mean, I am dealing with the symptom is being tired here. Shouldn't I be able to get over that?

I was diagnosed just over 3 years ago. I have tried countless things. One, is I have done a TON of research about it. I have never been one to sit around and "let things happen" to me. So, the books and countless articles say there is no cure, and once you have it, you are stuck with it forever. I don't believe it. I refuse to. I am 25 and I want to have kids - but I DO NOT want to pass this on to them. So I am trying my hardest to get through this.

You will have good days and bad as you have noticed. The reason to eat healthy, and sleep when you need to and as long as you need to, drink less, quit smoking - yada yada - is because your immune system will stay stronger that way, and your body can handle stress better. Our bodies were not designed to handle enormous amounts of stress and anxiety (feeling alone adds to that). So, when we stress out, our bodies pump adreneline into our blood stream to get us through it. Well, when we pump enough adreneline (and our bodies are not equipped to generate a lot of adreneline), then our adrenal glands (which produce adreneline) get depleted. Once they get depleted or overworked, then our immune system starts to fail. Once that happens, we get sick more often and exhausted. This exhaustion is like having mono - it can last for a couple of weeks, or a couple of months. You want to account for "lag" time. Meaning, once you feel super tired, you may stop drinking and start eating better. BUT, it takes time for your body to get used to this new change in your habits. Once the good-eating and exercise becomes a habit, your body is happy again, and you aren't tired.

Crazy, huh? So, I love enjoying life as much as the next person. I like going out, and I like eating chocolate sometimes. Just try to have it in moderation so you don't hit a wall. I know it sucks. I KNOW!

For now, hang in there. It is important to talk it out, and write it out anyway - even if people don't fully understand. DON'T shut down!

You can get through this. Everyone on these message boards can. And I am not trying to be a cheerleader here, but I have needed to hear that countless times myself. It's ok to believe it.


 
Old 06-03-2008, 07:04 PM   #7
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Join Date: Jan 2008
Location: Gig Harbor WA USA
Posts: 3
ktross51 HB User
Re: Sick of people not understanding my illness

I totally understand how you feel. I had hepatitis c for almost 30 years. I was diagnoised with epstein-barr syndrom in 1990 and chronic fatigue. Now I am on Social Security Disability because of the chronic fatigue and EBV. I do have a good day once in a while,but for the most part I am VERY fatigued.
People don't understand because they aren't walking in your shoes. I have been married for almost 31 years, our relationship is ending. I would much rather spend the rest of my life living apart from a very cruel miserable, unsupportive man. Stress triggers this illness. I do have to take meds to sleep at night. I also have other health problems. Just know, you are not alone. If you are being emotionally abused now, you need to seperate yourself from that. Life is too short and precious. Sleep when you need to, try and eat right, exercise when you can, walks are great, even if it's a short one.
Do you have any close friends that are supportive? I TOTALLY understand what you are going through and how you feel
I don't know what the future holds, but I know Who holds the future

 
Old 06-14-2008, 11:31 PM   #8
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Join Date: Feb 2008
Location: Milwaukee, WI USA
Posts: 62
David 12321 HB User
Re: Sick of people not understanding my illness

people not understanding and judging you is something that is going to happen and that you are just going to have to get used to, as harsh as it sounds, unless you want to be constantly frustrated, stressed and depressed because others are judging you. %$#@ them. if you are sick you are sick and if they can't understand it...let them go. don't react to what they say in a way they can see of they are going to feel justified in what they've said because you have reacted. don't even shake your head. listen in one ear and let it fall into the pile of *&^% it is out the other ear and go on with your life in a way that makes you feel better, not them. you are the one who is sick, not them. you are the one who needs to talk, not them. they are the ones who should listen and if they don't listen, they are never going to understand because they haven't listened. let it go and be happy.

 
Old 06-14-2008, 11:33 PM   #9
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Join Date: Feb 2008
Location: Milwaukee, WI USA
Posts: 62
David 12321 HB User
Re: Sick of people not understanding my illness

Quote:
Originally Posted by stayingpoz View Post
Jackie - Boy, do I understand. I was just talking to a friend this morning, crying, saying that it felt SO lonely to have chronic fatigue. No one ever really understands. They may try their hardest at times to be supportive, but I know they don't really] get it. You know? My dad even thinks this is all "in my head" - and he is super supportive about everything else I do. So, I guess I want you to know that you are not alone.

I think one of the smartest and best things you can do is look around at these forums when you feel alone and confused. I have felt like a giant loser at times - I mean, I am dealing with the symptom is being tired here. Shouldn't I be able to get over that?

I was diagnosed just over 3 years ago. I have tried countless things. One, is I have done a TON of research about it. I have never been one to sit around and "let things happen" to me. So, the books and countless articles say there is no cure, and once you have it, you are stuck with it forever. I don't believe it. I refuse to. I am 25 and I want to have kids - but I DO NOT want to pass this on to them. So I am trying my hardest to get through this.

You will have good days and bad as you have noticed. The reason to eat healthy, and sleep when you need to and as long as you need to, drink less, quit smoking - yada yada - is because your immune system will stay stronger that way, and your body can handle stress better. Our bodies were not designed to handle enormous amounts of stress and anxiety (feeling alone adds to that). So, when we stress out, our bodies pump adreneline into our blood stream to get us through it. Well, when we pump enough adreneline (and our bodies are not equipped to generate a lot of adreneline), then our adrenal glands (which produce adreneline) get depleted. Once they get depleted or overworked, then our immune system starts to fail. Once that happens, we get sick more often and exhausted. This exhaustion is like having mono - it can last for a couple of weeks, or a couple of months. You want to account for "lag" time. Meaning, once you feel super tired, you may stop drinking and start eating better. BUT, it takes time for your body to get used to this new change in your habits. Once the good-eating and exercise becomes a habit, your body is happy again, and you aren't tired.

Crazy, huh? So, I love enjoying life as much as the next person. I like going out, and I like eating chocolate sometimes. Just try to have it in moderation so you don't hit a wall. I know it sucks. I KNOW!

For now, hang in there. It is important to talk it out, and write it out anyway - even if people don't fully understand. DON'T shut down!

You can get through this. Everyone on these message boards can. And I am not trying to be a cheerleader here, but I have needed to hear that countless times myself. It's ok to believe it.

as far as i know, there is no known case where a parent has passed on cfs to an offspring. it's a rational fear but i don't think it's a realized fear. i've never heard of it being passed on to a child.

 
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