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Old 02-13-2007, 12:52 PM   #1
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Alone and desperate

Hello, I am new to this board and feel that I may find some support here with some of my fellow "kin".

In late May of 2002 I experienced my first kiss at 17. Little did I know, I was catching a disease which would haunt me, so far, through the age of 21. I felt fine until September of 2002. I was watching a tv special about the Civil War. I still remember the moment as clear as day. I used to be able to get six hours of sleep, and feel fine the next morning. As usual, I was up late. Suddenly, I felt very fatigued.

The fatigue was not gradual, as the need for sleep becomes by the end of the day. This fatifgue felt...foreign too. I wasn't tired... I was exhausted. I went to bed without finishing the special, and awoke the next day to still feel tired. No problem, i'l just sleep when I got home from school, right? Wrong. I felt horrible even after sleeping from 3-8.

Throughout the first two weeks it was so bad that I could not get throught a whole day without sleep. I remember crying once out of disbelief: it was a saturday morning, I had gotten 12 hours of sleep. I still felt tired. Only 3 hours after being awake, I found myself so tired that I could not keep my eyes open while attempting to watch a DVD I had borrowed from a friend. I slept all that afternoon.

I had no idea what was going on. Out of a 7 period day, I usually made it to the 2nd or 3rd before going to the nurse and napping for a little bit, trying to fight it through, and then having to go home.

When I saw the doctors, they had no idea what the problem was. My mom came to the conclusion that I was just physically and mentally stressing myself out. That was not true. At the time I was in decent shape, but I had never felt like THIS when I got to that standard which I was at. I had gone through daily stress since I was a child due to living in an abusive household. I had never felt like THIS due to mental stress.

What was there to do? The doctors found nothing after all. I demanded to see another doctor, and he was able to find the problem after two more tests: I had Epstein Barr Virus which was giving me Chronic Fatigue Syndrome. He explained that I would have gotten it that May but that it would not have kicked in until that September. When he explained that it was a branch of Chronic Mono, I knew what was up.

So, the cure? The treatment? Nothing. Either it would fade away, or I would live with it for the rest of my life. Wonderful. Oh, by the way, the chances of it killing me were low ! Was this a JOKE!? My doctor is telling me that I may die from this someday, and that I can't cure or treat myself! Wow, 17, not even an adult yet, I'm told I have a debilitating disease. That's something I can live with.

The upside was that it tends to run like cycles, so I was told, so sometimes I wouldn't feel AS sick as do a lot of the time.

Despite this, I continuted Track until February. To be honest, I always felt awful, so keeping in shape sounded great to me. Doing physical activities didn't make me feel worse, as I was already at rock-bottom.

The only good news was that I could get through a whole day now without a nap, but I still felt awful and needed abut 9 hours of sleep just to function.

My pride and joy, my great memory, was slaughtered by this evil disease. I used to be able to read something and then memorize all of the names, minor info, and even locations and dates, very often, along with the regular info. I could not do this anymore, and can not to this day. This was a nightmare for me in my English class. I don't know how I passed and got a wavering D to turn into a high C. Maybe it was because my projects came out well, my small homework assignments, and because I volunteered in class. Either way,
I struggled. I could NOT memorize or remember anything for Vocab, big tests, or grammar. I would retain the info, being able to recognize it if I saw the defination on a true or false or multiple choice problem, but I could NEVER fill in the blank and just recall the info.

One of my teachers was now a member of the club of Disbelief, other members including my parents and all but one of my doctors. My teacher even told me that she STILL expected my standards to by the same as others, and I would get no modifications or assistance. This class was required to graduate. Somehow, I made it. Thank goodness.

In my first year of college I managed due to hard work, multiple choice-like questions or questions on broad themes, and due to luck- to be able to recieve a 3.94 GPA. It would have been a 4.0, considering that I put all my free-time into my work, but... I could never remember things off the top of my head (and this affected my math class which I got a "B" in.)

Around that time, the summer when I graduated from high school, my dad forced me into a job at United Parcel Service. The ****'s there were awful and what followed was one nightmare of a year. I obviously could not pick up a box, read it, scan it, and put it in a perfect "wall" as fast as anyone else. My bosses weren't concerned. Throughout that year I was harrased, made fun of, and almost hit by bosses of mine. I resent them to this day. As you all know, CFS also effects speed, and they were ALWAYS houdning me about how "slow" I was. Well, God strike me down If I am lying, I was always working to the BEST of my ability. Whatever energy or strength I had. I had stopped doing Track that February before because it was suggested to me to stop doing strenous exerecises. Although doing and not doing exercise made no difference with me, this job was definately not needed.

I spent that whole summer when I wasn't at work trying to sleep. That magical summer where everyone socializes before everyone parts ways for college was nothing to me but a desperate stretch of time to get better. Just get better so I could be healthy and do well in college. It was all in vain.

My horrible father ignored my fatigue, and after 2 years of not helping me out, finally decided to teach me how to drive. Everyday during those 3 months was the same. I would react slow, forgot instructions in a manner of minutes, and would never be able to drive without hitting a curb, or reacting slow, or just plain being "sloppy". This brought on daily verbal bashing, and atleast a once a week physical attack. All because I had a disease that I could not control. BTW, yes I did eventually get my license, after two failed attempts, I got it that following Februrary.

After that horrible summer, and a succesful school year, came the next school year. MOSTLY due to severe ADHD, unleashed from a mental break-down I got due to my mom being an abused alcoholic, and the ensuing family mandatory meetings for AA, I could not longer do my school work. It was literally, impossible to read something and focus. ADHD now made what CFS had made very, very, hard, a very, very, impossible thing. CFS had always made sure a quick one hour read became a long and grueling five hour read, now ADHD helped make it impossible, whether in a quiet study hall or in the quiet of my room at night.

To save my grades, I took time off. I took two courses that summer, B+ in one and an A in the other.

I moved to Dartmouth that following year. I began the fall with five classes, and while I seemed to be doing good in those classes, my two chronic buddies made it so difficult for me that I could either choose to do bad in a ll 5 classes, or drop the 2 difficult ones, so I ended doing great- but I had only done 3 classes.

That Spring was the worst. I signed up for 6, and my situation was so bad that I had to drop down to 1. My parents won't acknowledge that I did great in it or that I did the best I could- they just focus on the fact that I took one class.

Which brought me to this year. I am proud to say that this fall I took 5 classes, completed them, and accept for one C+ (all memorization) I got all A's. My GPA is a safe, 4.0 (when I transfer back to Dartmouth), and my teachers all see potential in me, one of them calling me "one of the school's brightest."



*hold on everyone, I need to make a second post because the characters have exceeded the limit*

 
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Old 02-13-2007, 12:54 PM   #2
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Re: Alone and desperate

BUT... CFS is as bad as ever. I felt particularly horrible today. And it is so bad now, in conjunction with CFS that I simply can not do anymore of anything at the moment.

As of now I have 51 college credits, and will have that at the end of the year. Four years in college, and I only have 51 out of 120! I feel so alone, most of my friends will graduate this year and move on to careers or grad school- they have no stupid disease hurting them. Maybe it's wrong, but I sometimes wish that one of my more party-slacker-prone friends were to get this, as opposed to myself, who works hard, but am showing poor results for it.

My plan is to use the rest of this school year, and all of next year, so that I can get my ADHD and CFS under control. I literally can not sit down and read something at this point, without losing attentionm it doesn't matter if it interests me or not. I know I am doing the right thing for the long term, saving my grade while taking a difficult path, BUT I wonder how many employers will agree with me. I plan to go to Law School after I get my BA, but why should the employer hire me, a (will be when the time comes) 28 year old, over a fresher 25 year old who did not have time off? After all, my disease is "made-up" and that makes me no different than kids who took time off to travel to Europe or sit home and play video games all day! No not at all!

And this worries me. Will I, assuming that I do recover, face this impedment for the rest of my life? My grades may save me, but what if they don't?

I plan on exercising and getting back into shape for the first time in four years. I plan on trying to de-toxify my body and to avoid sugar, salt, wheat, and other things which are said to build up toxins. This is the only alleged way to treat and "cure" the body of this disease, by flushing it out.

Or so I have been told.

Either way, medication and therapy will be needed too. And I refuse to bomb out of school and flunk classes when all I needed was a little bit of time.

No stress, and constant support are needed too. But what can I say? My dad is a bipolar who is unemployed and does nothing all day but try to start violent fights if he is not in bed. My mother is a "grape" or "space-shot" after years of alcohol- she is also unemployed, and watches tv all day.

NONE on my friends understand my illness. Half think I'm lying to try to gain federal subsidary benefits, and the other half simply don't know how to help.

My father is the biggest problem in my life right now. I'm searching for a high-paying enough job where I can buy an apartment, and have a peaceful place to live for the next year. It got so heated that I had to leave on Sunday, and have stayed at a friend's house for the last 2 days.

I can't escape my family by joining the military, as CFS disqualifies me, and I wouldn't have a bat-in-hell's chance of being able to perform the daily standards that they expect.

So now I find myself out of school at the moment, unemployed, and not sure where I will be sleeping tonight. I feel like a loser, but then I have to remind myself that it's not true- I have a great GPA and am only thinking ahead, my job was out of my control (my boss at Blockbuster gave me time off to study for my finals, as CFS makes it take up my full day, and I had to study day-in and day-out for a week. I was given the impression that my position would stay open, but it turned out that it was filled. Talk about a royal screwing) and I don't know where I will be sleeping only because I have a violent father who I can no longer live with. So... I know it's not my fault, but why do I keep feeling like a loser?

I don't know what to do anymore. I have my long-term plan set out. But what about the here and now? How long will it take to find a goofd job? How many friends will let me temporarily stay with them until I may have to stop at home? My parents don't acknowledge my sickness, and will flip when they found out that I dropped my spring courses...

What did I do to bring this on to myself? I work so hard at school and work, and I'm always there for my friends, and I was even someone with a lot of Faith before my situation the last few years kept on getting so bad that I have begun to doubt that if God is real, he would allow me to suffer like this for no reason.

So, here I am typing this out, not quite sure who I will drop in on tonight. In a few days I can maybe drop in and get my mom to maybe set me up with some relatives, and I can go from there.

But...

1. Nobody understands what I am going through

2. I honestly feel abandoned with my new-found doubt in a higher Deity

3. I am afraid that the business world will use age and "gaps in time during school" against me, as nobody recognizes CFS as a real disease.

4. I'm afraid of how go get through the next weeks, where to live, how to find a decent job.

5. I'm afraid of the unspeakable. Maybe I will never get better. If so, I could never memorize the laws needed to be at attorney, and maybe I'll have to shift gears and become a history teacher, at least I'll have notes I can look over.

--------------------------------------------------------------------------
However, I didn't come here just to tell my story and share my worries. I also came to ask questions from you all. I already feel a connection with everyone on this forum, we suffer from a crippling disease that nobody exept for ourselves can understand, and one which many doubt exists at all!

1. What is your story?

2. Have you recovered?

3. If not, have you been able to treat some of your symptoms?

4. How do you get by each day?

5. Do you have hope?

6. What foods/drinks should I eat? What should I avoid?

7. What kind of exercise is my friend, and what kind is considered strenous?

I also had two medical questions

1. My eyes hurt every day. A lot. Is this a seperate symptom, or is this part of feeling tired all the time? I wouldn't know, I haven't felt a "normal feeling of being tired" for four years now....

2. My waist hurt for about a week after I first came down with this sickness. It has been fine since. Was this one of the muscle cramp symptoms, or was it someting else? If it was, it seems to have left a long time ago...

3. I tend to get gradually setting headaches. Everyday. They are not the same that you feel with a bug or a flu, it's almost like it's on the outer fringes of the brain. I do know that I get them everyday because I start to, well... live. Everyday activities I try to concentrate on, and then I get headaches, sometimes they are pounding headaches. I don't know if the headache is a result from my ADD or if it is a seperate symptom of CFS. Or both?

Last edited by AK2; 02-13-2007 at 01:27 PM. Reason: Needed to add a question

 
Old 02-14-2007, 03:36 PM   #3
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Talking Re: Alone and desperate

{{{{{ AK2 }}}}}}}

Hi! I am so sorry you are going thru all of this and that it has brought you to us. We will as you will find , be supportive, understanding and give you some info on how we survive.

I am a 52 yr old woman who also has fibromyalgia.. and a host of other things.. just went thru chem and radiation.

I was 36 and went like a freight train... I hardly ever slept and could work circles around any of the guys I worked with ( I worked in Manufacturing Co. and was attempting to be their first ""woman"" in management). Which I did succeed at .. but not with out a LOT of STRESS. and there lies the main brunt of my CFS. Stress made the cfs worse and the fibro worse and my memory which I was so proud of disappeared like yours. I had scarlet/rheumatic fever when I was 6.. Then at 17 i got mono... by the time I got to my 30's it was wonder I could do anything. But I kept pushing.. had to just like you! By the rime I turned 40... I was beginning to miss more work than I was actually there. My dr would put me on medical leave the instant he saw me.. I was having to see him every 4 months.. and in between I would become exhausted.. My main problem is that I also have PTSD and I DO NOT SLEEP!!!! after 4 or 5 days I will become almost comatose.. and maybe get 6-7hrs.. then it starts all over again. this little history is so you know other of us have been thru what you are going thru..

The only way I have ended up dealing with it .. is to remove as much stress from my life as i can.. ( yeah like we can do that) The company I was working for and did work for -- approx 22 yrs.. sold and all of a sudden i didnt have a job.. talk about stress... i worked a couple of temp jobs and then went back in to HR.. was there about 2 1/2 yrs and they sold and I was out of a job again. Finally I went to work as a 911 dispatcher.. I loved it.. I worked third shift ( I was up all night anyway) and did pretty well until the cfs reared its ugly head and then I was a mess.. I could barely string two coherent words together let alone assist in an emergency. Ok so i finally gave up... I quit the job and decided I would just have to take care of me. ( I am married and have one son 27) I filed for SSDI and got it for my depression and anxiety from dealing with all the wierd symptoms and stuff.

I thought it would be a lot better. BAM right after christmas it hit me like I had never had it hit. I was hurting all over ( probably the fibro, too ) I couldnt keep my eyes open .. but i could not get enough sleep.. My temperature was staying at a steady 99F even after taking tylernol or ibuprophin. So I hate to say it .. all you can do is to take it one day ( or i manage a few hours) at a time.... Find a GOOD dr, maybe a rheumatologist or an Internist, Make a schedule of what must be done and what would be nice to have done and go from there.. I take a multivitamin, muscle relaxers, pain meds. try to do stretching exercises to help keep some tone.. I am sure there are others here who will have some things they do that helps.. I really when it gets bad just have to go to bed and wait it out!

But if you ever need to vent you can come here and we will help all we can.. sometimes that helps just in its self

 
Old 02-14-2007, 05:51 PM   #4
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Re: Alone and desperate

Thanks, I really, truly, appreciate your support.

The good news that I have to share with you all is that I found a place to stay last night, and for tonight, a friend of my family.

Tomorrow I am going to be staying with my uncle a few towns away, and will then (I live in Massachusetts) two weeks from now leave his house to go to Alaska to stay with a different uncle and his family, he said he will help find work for me, which is JUST what I need if I want to save money and get an apartment.

In this relaxing, normal, family, I hope to within a month be on a fruit/veggie diet, do a two week toxin-cleansing program, then resume with fruit and veggies. By avoiding caffeine, salt, sugar, wheat, and dairy, I have been told by a few people who have flsuhed the virus out, I can finally rid myself of this.

I'm very happy that my life could begin to turn around as of yesterday, and I thank you all for your support, and am glad that I was able to bring good news.

I'll keep in touch in the next few weeks, and I'll help you guys out too if you need a shoulder to cry on.

Take care!

 
Old 02-20-2007, 12:17 PM   #5
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Re: Alone and desperate

Quote:
Originally Posted by AK2 View Post
Thanks, I really, truly, appreciate your support.

The good news that I have to share with you all is that I found a place to stay last night, and for tonight, a friend of my family.

Tomorrow I am going to be staying with my uncle a few towns away, and will then (I live in Massachusetts) two weeks from now leave his house to go to Alaska to stay with a different uncle and his family, he said he will help find work for me, which is JUST what I need if I want to save money and get an apartment.




Take care!
Hi - I've had CFS for 10yrs and son has for 4yrs.

So glad you've got a place to stay.

I'd say the most important thing is to stay wth quiet relatives or get a place of your own - the stress at home is bound to make you worse.

Don't overdo exercise - just gentle walking - you don't wnat to bring on a relapse.

Try to pace your activities (should find lots of tips on Google).

Don't worry about getting a job after you qualify and gaps in education etc - just focus on small easy to attain goals and let the future take care of itself for now.

Try as healthy a diet as possible - you could leave out wheat, milk, sugar - one at a time - but it only works for some.

Just be kind to yourself - you know your ill - try another Dr if possible - you'd feel better if you had a firm diagnosis.

 
Old 02-21-2007, 09:37 AM   #6
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Re: Alone and desperate

Hi there! First off you are not alone. All of us here have very similar stories. Mine is long but I will tell you I am a 41 yr old stay at home mom. Always did Tae Bo to stay in shape. I was very active. When I got sick it was really hard. Almost screwed up my marraige for awhile. Thank God he understands now. The most important thing for you is to stay somewhere where you feel safe. This disease is hard enough. You need a peaceful environment to heal.
I have had this for 1 1/2 yrs/ And it is hard getting others to believe, I know. I spent four months being so angry that people didn't understand or believe. Then I realized it doesn't matter what other people think. Get a good doctor I have a team of specialists who help me. And they all believe. I am on pain meds and something to help me sleep.
You have to keep your faith! You have to take it one day at a time. You have done the best you could do. Yes, you would have kept going to school but you KNOW it is better to get well first. Give yourself that respect. You are NOT a loser!!!!
Understand that God wants what is best for you. Instead of feeling sorry you have this try and figure out what God wants you to do. I could be angry and feeling like why me. But then I am so happy it is not cancer! I thank God each day for today. It took a long time to get here.
The acceptance will come. You will have good days and extremely bad days. I am at a place now and you can try and get there to where you take your pain and flu feelings and still thank God for that day. I rest when I can. Pace myself.
I do have hope that this will go away. By I almost think it is dangerous to think it will go away. It is better to wish that I can deal with it better.
The eye problems I get are sore eyes. I keep rewetting gel i n the fridge to keep it cool. And put it in when I need it. My waist has not hurt me. But almost everything else.
I only do stretches now. I used to work out hard. So this is a part of my old self that I mourn. But hey, aren't we troopers to stretch and do what we can when we're so sick?
I get headaches too. Sometimes they last for 4 days. Right now I haven't had one for a few days.
Please don't feel so alone. You can't let it beat you. Take each day one at a time. It moves within us. We never know what will hurt next. Get a good doc. It took me three gp's and an endocrinologist to really get diagnosed. ANd so many other appointments. Try and be happy every day. Make a point of it.
You may look back one day and find you were happy over the small things you may have never noticed if you had been well.
Good luck with everything.
Deena

 
Old 02-22-2007, 04:00 PM   #7
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Re: Alone and desperate

Being chronically fatigued is no fun. I finally went on disability because of it. I had changes in my Epstein Barr titers 10 years ago. Recently checked and shows that I had a past infection and not a current one. I am still very tired (exhausted) and feel flu-like most of the time. It sems like I have ups and downs with the fatigue and now I am on hte downside. I have been on antidepressants which help some with the depression associated with the disease. Find a support group and check out the book "From Fatigued To fantastic". It has some very good suggestions. Keep in touch and I wish you the best.

I understand what you are going throu gh-

Diane

Last edited by u2star; 02-22-2007 at 04:01 PM.

 
Old 03-08-2007, 01:07 PM   #8
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Re: Alone and desperate

As you can tell, many of us understand your situation! You may want to have a Dr. run a complete Thyroid panel as well - so many of your symptoms could also be realted to low thyroid. I have both and with medication, life is good again - I definitely have my tired, loss of memory days, but they are better. Good luck and God Bless!

 
Old 03-15-2007, 01:51 PM   #9
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Re: Alone and desperate

Hi, AK2 -- Boy, can I empathize with you! I'm out of school many years now, but like you, I also considered a high GPA more important than how many years it would take to graduate. Don't worry about your friends graduating now, and getting jobs and stuff -- they don't have your illness. You have to be as kind and forgiving to yourself as YOU would be if it happened to someone else.

I hope you got a leave-of-absence, so that you don't have to go through the application process all over again. It also helps you to know you're still registered with the school; that way you know you're still a student!

I can't even imagine the many challenges you face in your personal life. It's bad enough that you have such a life-altering illness, but to have parents who are of no use and support to you, and who, in fact, hurt you and stress you out, and detract from your goals, well, you might as well be trying to swim through life dragging a two-ton anvil while being hit over the head continuously with a sledgehammer. So I congratulate you for having 51 credits after these years, and a high GPA to boot! That's a fine performance in my book.

As someone else said, don't worry about having to explain gaps, or your age, to future employers. Unless you plan to apply for one of the few high-stress wall street jobs as an attorney -- something I'd discourage you from anyway -- there will always be a job for you. I know several attorneys personally for whom law school was a second career direction. So not everyone arrives as a fresh-faced twenty-five year old. Whether or not law school will be more difficult because of the memory loss is another question. My son made it, but he has an excellent memory. But don't you think that you have to memorize every law on the books, either. Part of a law school education is teaching you how to research those laws! Nobody knows them all. If you are maintaining this great GPA, I'd say law school would be no more difficult for you than college is, now. The Bar exam is a toughie, but with preparatory courses it becomes doable. You'll do fine with those.

As for god -- well, I ceased to be a believer too, but it wasn't because I thought he had abandoned me because I'm sick. I ceased to believe because I learned so much more about the history of religion -- the beginnings, the divergent paths, why some things are 'canon,' and some writings accepted into the bible while others left out (and all decided by men); how many cultural traditions were simply adapted when a new religion came along.... it is all such a direct path of evolution of ideas, beliefs, rites and rituals, that it demonstrates to me, at least, that it is all man-made, anyway. However, do not let my saying this dissuade you from any beliefs you may have, particularly if you find you need them now.

Your eye problem might be Sjoegren's Syndrome. I had this for years before I was diagnosed, and it never dawned on me that it might be part of a systemic problem I was having. Oh, BTW, I have lupus, with a major symptom being profound fatigue, and also Sjoegren's. Perhaps you also do. My eyes frequently burn, and/or feel like there's sand in them. Hurts a lot. Artificial tears is the only thing that ameliorates it. And when it's really bad, I have an ointment that does the same moisturizing, but because of its viscosity it remains in the eyes longer, but of course I can only put it in my eyes at night.

I sure hope you get a well-paying job, an apartment that allows you to get out of your parents' place (are you going to try to buy one and get roommates, or rent one on your own?), and then back to school to continue your education. You are taking the right approach -- education above all! They can never take that away from you! And it will make you independent of your parents. Do not worry about the time it takes -- take your time! Try to get a WRITTEN diagnosis from a doctor. Don't let doctors who don't "believe" in CFS deter you; just find another one, or go to the one who does. Be kind to yourself; dump anyone who doesn't love you enough to believe that you are ill; keep only the people who understand and care in your life. Watch out with the exercise! I was an exerholic myself, and a dancer and athlete, but I now know that LISTENING TO MY BODY is more important than anything. Your body knows best -- when you are to weak to do something, you obviously shouldn't do it! Don't believe anyone who suggests you should push yourself through it. That will give you physical stress with is immediately detrimental to your health. It's good to have a healthy diet, but be careful about people offering you fad diets that will cure all. Be cynical, and don't trust anyone but your own research. And always look at credible sources, only. Anyone with a good rap can sound persuasive. Personally, I don't believe in this idea that you can flush out the toxins in your body. I especially don't think that a diet will make you better. I also think it's dangerous to believe that... if you do, then you've made the mental commitment that it will happen, and then you don't want to be wrong or let yourself down, and you might start acting as though you really ARE better. But in reality you'll probably just be pushing yourself, and just making yourself sicker. So, by all means, try any healthy diet, but continue to listen to your body with great attention, and with honesty and truth. Don't allow HOPE to take the place of FACT.

But always continue to hope, too!

All my best to you, in all your endeavors -- I do so hope you will feel better!

Gigi

 
Old 03-16-2007, 04:00 AM   #10
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cmatt HB User
Re: Alone and desperate

hello i never heard of cfs until i read your story what is so wierd if you would'nt have stated your disease i would have thought yo were suffering from narcolespsy i just found out 6 months ago i had narcolespy and for years i was so tired no matter how much sleep as you explained and trouble remembering things i'm now beiung treated with medicine for adhd which helps me satay awake during the day my sleep center doctor said said to take 2 45 minute naps a day to keep from feeling so tired and not to sleep more than 8 hours in a night cuase more sleep makes you more tired and the headaches i experience alot from bieing so fatigued and trying to function and it's li,ke a headache from tring to just focus normally i also have periodic limb movement disorder which is a repeditave consricting of the muscles in my legs that occur every 40 seconds in my sleep for years i was in pain with my legs and no doctor could find anything wrong with me until i went to a sleep center now i'm on medication for parkinson's disease to slow down the limb movements and will problbly deveolop the disease i may not have the same problem as you but when you were explaining your family and experiences in life i felt like i was reading a piece of my own biography the only tips i have on your symtoms is remember sugar slows down the body and will actually cause tiredness check out a sleep center to see if this disease which obvilousy has created a sleep disorder ther are many safe medications to take that will help you from being so sleepy and also help your memory one is called providil ask your doctor about it i will keep you in my prayers
Quote:
Originally Posted by AK2 View Post
BUT... CFS is as bad as ever. I felt particularly horrible today. And it is so bad now, in conjunction with CFS that I simply can not do anymore of anything at the moment.

As of now I have 51 college credits, and will have that at the end of the year. Four years in college, and I only have 51 out of 120! I feel so alone, most of my friends will graduate this year and move on to careers or grad school- they have no stupid disease hurting them. Maybe it's wrong, but I sometimes wish that one of my more party-slacker-prone friends were to get this, as opposed to myself, who works hard, but am showing poor results for it.

My plan is to use the rest of this school year, and all of next year, so that I can get my ADHD and CFS under control. I literally can not sit down and read something at this point, without losing attentionm it doesn't matter if it interests me or not. I know I am doing the right thing for the long term, saving my grade while taking a difficult path, BUT I wonder how many employers will agree with me. I plan to go to Law School after I get my BA, but why should the employer hire me, a (will be when the time comes) 28 year old, over a fresher 25 year old who did not have time off? After all, my disease is "made-up" and that makes me no different than kids who took time off to travel to Europe or sit home and play video games all day! No not at all!

And this worries me. Will I, assuming that I do recover, face this impedment for the rest of my life? My grades may save me, but what if they don't?

I plan on exercising and getting back into shape for the first time in four years. I plan on trying to de-toxify my body and to avoid sugar, salt, wheat, and other things which are said to build up toxins. This is the only alleged way to treat and "cure" the body of this disease, by flushing it out.

Or so I have been told.

Either way, medication and therapy will be needed too. And I refuse to bomb out of school and flunk classes when all I needed was a little bit of time.

No stress, and constant support are needed too. But what can I say? My dad is a bipolar who is unemployed and does nothing all day but try to start violent fights if he is not in bed. My mother is a "grape" or "space-shot" after years of alcohol- she is also unemployed, and watches tv all day.

NONE on my friends understand my illness. Half think I'm lying to try to gain federal subsidary benefits, and the other half simply don't know how to help.

My father is the biggest problem in my life right now. I'm searching for a high-paying enough job where I can buy an apartment, and have a peaceful place to live for the next year. It got so heated that I had to leave on Sunday, and have stayed at a friend's house for the last 2 days.

I can't escape my family by joining the military, as CFS disqualifies me, and I wouldn't have a bat-in-hell's chance of being able to perform the daily standards that they expect.

So now I find myself out of school at the moment, unemployed, and not sure where I will be sleeping tonight. I feel like a loser, but then I have to remind myself that it's not true- I have a great GPA and am only thinking ahead, my job was out of my control (my boss at Blockbuster gave me time off to study for my finals, as CFS makes it take up my full day, and I had to study day-in and day-out for a week. I was given the impression that my position would stay open, but it turned out that it was filled. Talk about a royal screwing) and I don't know where I will be sleeping only because I have a violent father who I can no longer live with. So... I know it's not my fault, but why do I keep feeling like a loser?

I don't know what to do anymore. I have my long-term plan set out. But what about the here and now? How long will it take to find a goofd job? How many friends will let me temporarily stay with them until I may have to stop at home? My parents don't acknowledge my sickness, and will flip when they found out that I dropped my spring courses...

What did I do to bring this on to myself? I work so hard at school and work, and I'm always there for my friends, and I was even someone with a lot of Faith before my situation the last few years kept on getting so bad that I have begun to doubt that if God is real, he would allow me to suffer like this for no reason.

So, here I am typing this out, not quite sure who I will drop in on tonight. In a few days I can maybe drop in and get my mom to maybe set me up with some relatives, and I can go from there.

But...

1. Nobody understands what I am going through

2. I honestly feel abandoned with my new-found doubt in a higher Deity

3. I am afraid that the business world will use age and "gaps in time during school" against me, as nobody recognizes CFS as a real disease.

4. I'm afraid of how go get through the next weeks, where to live, how to find a decent job.

5. I'm afraid of the unspeakable. Maybe I will never get better. If so, I could never memorize the laws needed to be at attorney, and maybe I'll have to shift gears and become a history teacher, at least I'll have notes I can look over.

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However, I didn't come here just to tell my story and share my worries. I also came to ask questions from you all. I already feel a connection with everyone on this forum, we suffer from a crippling disease that nobody exept for ourselves can understand, and one which many doubt exists at all!

1. What is your story?

2. Have you recovered?

3. If not, have you been able to treat some of your symptoms?

4. How do you get by each day?

5. Do you have hope?

6. What foods/drinks should I eat? What should I avoid?

7. What kind of exercise is my friend, and what kind is considered strenous?

I also had two medical questions

1. My eyes hurt every day. A lot. Is this a seperate symptom, or is this part of feeling tired all the time? I wouldn't know, I haven't felt a "normal feeling of being tired" for four years now....

2. My waist hurt for about a week after I first came down with this sickness. It has been fine since. Was this one of the muscle cramp symptoms, or was it someting else? If it was, it seems to have left a long time ago...

3. I tend to get gradually setting headaches. Everyday. They are not the same that you feel with a bug or a flu, it's almost like it's on the outer fringes of the brain. I do know that I get them everyday because I start to, well... live. Everyday activities I try to concentrate on, and then I get headaches, sometimes they are pounding headaches. I don't know if the headache is a result from my ADD or if it is a seperate symptom of CFS. Or both?

 
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