A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Is life worth living with this?

Discussion in 'General ME/CFS News' started by roma, Dec 14, 2010.

  1. roma

    roma

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    Seriously i need to vent, for me it hasn't even been 8 months since i got something infectious back in May during sexual intercourse my condom broke and i didn't notice it till i was done, a few weeks after, i noticed there was something very wrong with me because i started to feel a bunch of different symptoms which i had never seen or felt in my life then suddenly somewhere around six weeks of being sick i had a "viral spike" and got really sick with all sorts of symptoms and complains including a really bad rash in my back(multiple eruptive dermatofibromas i still have a few of them) after this "viral spike" i was really sick for like two moths in a row and lost a lot of weight all the symptoms then started to quite down but not to go away, in the mean time i was freaking out thinking i had gotten HIV but the tests kept coming back negative and every time i went for a new test and told the doctors and counselors about my symptoms they would tell me to be strong because my symptoms mimic HIV a lot but were also surprised also to know that i had previously tested for HIV and it was negative anyways this went on for about 5 and a half months testing for HIV 1/2/0 and full panels of sdts at different clinics and hospitals in total i took like 10-12 HIV tests including PCRs Quantitative and Qualitative many many antibodies tests and kept coming back negative the reason i kept testing is because i was convinced i had gotten HIV but then i realized test would have been positive at some point if that was the case then i turned my attention to HTLV specially because HTLV seems to cause progressive brain demyelination to some people and i had recently gotten my brain MRI results back and it showed brain demyelination tested for HTLV 1/2 several times negative i was convincing myself that i was fine every time i had some test done i would feel good for about 30 minutes because i was relieved that my test was negative but the symptoms didn't go away, finally i started reading everything about XMRV and it hit me, i remember the girl i was with told me at some point that she would faint all the time and that she was really tired all the time and they were trying to figure out why, she actually doesn't work because she's in pain all the time, so i thought damn maybe i got this new virus, while i haven't tested for this virus yet a couple of doctors who i met recently told me that my symptoms mimic HIV and they both told me that is obvious that i got some sort of retrovirus, my current symptoms are brain demyelination, major IBS problems, extreme fatigue(feels more as if i had been beaten with clubs) major lower back pain, feel intoxicated, major cognitive problems, shaking all the time feel as if i was gonna have a seizure, spleen pain, white thrush, swollen tongue with teeth marks on side, and all sorts of weird feeling in my head including tingling in head, numbness on face, hot and cold sensations in head, feel as if i was hung over but i don't drink, and lately i have noticed tingling in feet toes and fingers and also i can't move my right arm to scratch my head(because of thinning of myelin sheat) after all this it really makes me wonder how some people have survived this long with this damn condition it hasn't even been a year for me but i feel worse and feel more disabled by the week over the past week the last though in my head before i go to sleep is "i wish i don't wake up tomorrow" i know it's depressing but i can't function anymore i can't work as i used to im the slowest guy now in everything i do , 9 months ago i was going to the gym and i could run 4 miles none stop now i can't even get from my car to my third floor condo with out feeling like my heart is gonna blow and also feeling like i can't breath, seriously how can anyone survive this? i finally found some good doctors who are willing to treat me but i have been feeling so bad this past week that it's making ask myself if it is really worth trying to get better or if it is easier just to call it quits in any case i was approved for a $250000 life insurance today (which i got thinking about my health problems) according to their labs im in excellent health so lucky for me, but in reality every day now is a huge struggle it makes me think of many ways to kill myself and make it look like an accident, i don't have the guts to do it i think but my health is so bad that sometimes it seems to me like it would be better to stop living and be done with it.....i know it sounds depressing and im sorry for feeling like this my my life went from being a perfect life to horrible hell in just a few months...i do feel better when i read good news about XMRV but my health is getting worse and worse by the day and the good news about XMRV only come around once or twice a month if we get lucky..
     
  2. Wonko

    Wonko Senior Member

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    The other side.
    life is life
    sometimes better, sometimes worse
    if you cant do anything about it you get used to it
    people can get used to anything given time
    its our biggest strength and our greatest weakness

    is life worth it? thats one of the big questions - I have no idea - it just is
    everyone, literally everyone, has to adapt and learn to live within changing limitations that they may not choose if they had the choice
    the limits may be different but the options are the same - adapt or go under

    at the moment your dealing with loss, dispair,fear and probably anger - this is completely normal and whilst these emotions dont go away they do stop being all consuming all the time - this is also normal - it just takes time - although finding another interest, that doesnt come up against your new limits too often, helps in some cases.

    it changes, everything changes, sometimes it's better, sometimes it's not, but your ability to deal with it will improve, your ability to cope will improve, your ability to shrug off the negative will improve - this may be difficult to accept right now but it's still true

    give it time and you'll adapt - it's what people do - we're good at it

    I hope that makes sense - I'm a little fragmented atm
     
  3. August59

    August59 Daughters High School Graduation

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    Hey Roma - I don't mean to sound petty about this, but I'm trying to read your post for the 6th time and I can't. If it is possible in the future try to break your post up into 3 or 4 sentence paragraphs.

    It just makes it much easier to follow since my eyes don't tend to stay still. Yes! It is worth living, but it is different and I believe there is hope. Hang in there till we get it figured out
     
  4. Enid

    Enid Senior Member

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    Hang in - they are getting there now.
     
  5. Rooney

    Rooney Senior Member

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    Hi Roma,

    Your quandry reminds me an Eddie Murphy movie where his character keeps verbalizing "Keep it together, keep it together, keep it together." to cope with what is happening to him.

    I hope you are slowing down every activity you possibly can. Pace yourself even with seeing physicians. Ask for help from your friends or family whom you think might be sympathetic. And never carry anything heavy up those stairs! Be selfish about taking care of your needs over others. Look obligations in a different light than in the past when you were well. These things are how I have coped.

    I was just thinking yesterday how on most days life tries to break me, but I don't break. Keeping it together is an accomplishment in itself.

    I'll be thinking of you and hoping for the best for you.

    Rooney
     
  6. Sherby

    Sherby Sherby

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    roma,
    I'm so sorry you're going through hell at this moment in your life. You're probably freaking out
    wondering what's wrong with you and not getting any answers from doctors.

    I presume most of our forum members know exactly what's going through your mind. We have or most of us have all been there.
    Can i suggest some thoughts that help get me through the hard times.
    When I'm feeling really down and depressed i remind myself that the mood will lift, maybe not today but tomorrow might be better.
    When I'm feeling really ill and exhausted again i tell myself that maybe tomorrow i might feel a lot better.
    May i suggest that if you can , remove yourself from any stressful noisy environments'.
    Don't fight this, mind over matter only works for a short time until eventually you crash making matters worse.
    If you have had CFS for the last year, you still have a very good chance of recovery or large improvement as long as you don't fight it.
    First find your base-line and go from there.
    We can all relate to your current situation. Phoenix rising members are always here, wishing you well.
     
  7. Merry

    Merry Senior Member

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    This is terrible. I'm sorry, roma. I hope you have told your doctor about all the symptoms. Some symptoms surely can be treated, such as the thrush.

    Advice others have given you already is good. Rest, rest. And rest more.

    Please know that many people are thinking of you and hoping that next week is better.

    Merry
     
  8. Francelle

    Francelle Senior Member

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    So much has happened to you Roma in such a short time and it is a 'shock' to your psyche. Not being able to do what you once took for granted is the hardest thing. It takes a lot of getting used to.

    I spent my first year researching and going around and round in circles wondering what was wrong but now I have reached some peace with how things are. As Wonko said, "your ability to cope (with these changes) will improve" in time.

    Keep coming here for support and keep being proactive in terms of seeking appropriate treatment.

    The dark moments of now will lift and next year we all could be in a very different place!
     
  9. Nielk

    Nielk

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    Roma,

    I'm so sorry you have to go through all this pain, anger, frustration...

    Not so long ago, I myself was asking the same question you are asking today.
    It's normal to fall into despair when you don't understand what's going on and don't see a way out.

    Many of us have gone through these feelings and we try to support each other to pull ourselves out of it.
    I know many people in this forum have helped me with soothing words.

    So I would like to try to pay it forward.
    There is a reason for each one of us for being here and each one of us is an intrinsic part, just by being here.
    Sometimes you can contribute more, sometimes less.
    Sometimes we have to go through terrible pain and at other times we experience immense joy.

    There will be a better day.
    We all need you.

    Nielk
     
  10. Sushi

    Sushi Senior Member Albuquerque

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    Hi Roma,

    As others have said, I really feel for you--and yes, most of us ask ourselves this same question all too regularly. :( The answer changes from day to day, but the reality is that this is our temporary reality, and we just hope and trust that it will change and we try live it as best we can right now.

    You're positioned better for recovery because you haven't been sick long and thus probably don't have as much cumulative damage. And, for the first time, there are possible treatments on the horizon.

    The tougher thing about having had everything do down so fast is that you remember so clearly what your life was like just a few months ago. For many of us it was like the lobster plonked in a pot of cool water, not realizing that there is a fire under the pot and the temperature was slowly rising. For me, it happened over many years so that I can now barely remember what it "felt" like to have energy and to be able to do whatever I wanted to.

    Hang in there! There is great company here and a bunch of fascinating people you would not have otherwise met. We are all going to make it--slowly--with the help of each other and the dedicated researchers who are with us.

    Best wishes,
    Sushi
     
  11. Chris

    Chris Senior Member

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    Hi, Roma; Sushi and the others have it right--listen to them! There are probably going to be periods when you improve somewhat, and life will become bearable again for a while--and with serious research under way finally, this is no time to quit--we will all have to be patient, but answers are coming slowly. The tide has turned, so hang on there!
    Best, Chris
     
  12. guest

    guest Guest

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    Great answer. I agree with every sentence.
     
  13. lucy

    lucy Senior Member

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    The hardest I think is the first half a year. Because at that moment your brain thinks that all diseases resolve sooner or later, and it is before the doctors classify your illness as chronic. In a non-health related forum I saw people who under the topic "what makes me sad" put they were sad they were sick for two weeks. That is what is normal.

    What is becomes normal for us from this forum is that such post looks incredible. You think: "what?! Only two weeks?" Such post also can make you sad, because you cannot have what all average healthy people have - the hope to be ok after a week or so.

    For me personally - I don't know if it is antidepressants or scepticism, I have no feelings anymore about such things. Before it went like that: every week from Monday until Friday my mental state gets worse and worse - friends go climbing and karate after work, I stay at home and sleep, and during weekend I would spend one day with a breakdown crying, my friends in the mountains.
    After some time it was enough, and I discovered that it is possible to go on living, although it is very different living than before. Some kind of transformation happens, because all the world has to be repositioned. The strangest thing is that if before the goal of spending free time was to have fun, now I did not want to have any any fun at all,as I would get tired. Having no pain was ok, but being not tired is much more important. So all the values change, but it takes time to transform like that.

    Even if you read articles which say that acceptance of the illness improves your well-being, it does not help, so I totally agree with the others, that time is needed to adapt.

    Moreover, this is contrary to what we are used to. All the stories feature a warrior as a role model, who does not accept and fight. So I had very big difficulties to change my mind. Now please don't laugh, but what helped me was startrek voyager series, where they had this super beautiful Borg woman who in her hardest moments would tell "I will adapt".

    I was asking myself sometimes if I would ever do a suicide if it continues like this. I decided, that I am not the suicidal type, until I have not tried other possible things in my life. There are many radical possibilities - like selling everything I have and going to live in the nature (provided you are able to move), kinda leave society. Or going to China to some monastery to learn proper meditation. Or to try Chinese traditional medicine. To try thai-chi. I think if you are able to sit on a plane or a buss and go somewhere, it is better to explore what else is there in life before giving up. There are many ways to live a life, not only being an efficient person who works 5 days per week, creates a family, has fun and so on. So it is better to die searching than giving up. I could also go to some warm country and be stoned until I die.

    I am also personally carefull about putting hopes on XRMV because it will take time untill they develop proper tests to be trusted, at that point I will get diagnosis, but that will not change anything in my life, and it will take several years to develop medicine and apply it for patients. I see a bunch of researchers, then pharmacists, then people in the administration of health systems that will have to do a lot of work, until it reaches us.

    This is of course not helping to get your spirits up. So I will put things what helped me.

    During hardest times one thing helped me a bit - doing "good" for others. Like helping a small bit for a small organization for children with cancer. Doing a nice thing for a colleague, who has no clue that you are in a state of fainting at any moment, running fever, skipping heart beats and so on. This was rarely possible and most of the times I secretly hoped that nice things will happen to me myself :) The idea behind is to get you feel that even so sick, you can be a good force in the universe.

    Another thing what helps me is to do some planning, like setting the goal of what would be nice to have done during the week. I am into arts, so usually it was related to arts. In anycase this planning is totally different than what healthy people do. The starting point is that you will do nothing at all and see about things when you are better. The starting point for healthy people is the list of things "what has to be done", although I see that in fact healthy people rarelly set goals, they just live their lives. So start from absolute minimum by adding what you want to have done and what will not destroy you. You need to relearn all the time what destroys you and what does not. Because the illness fluctuates, and you get better, you do something that is ok for you, and other day it is not ok.

    When you get better, you will have a lot of use of your planning, and for sure you will come to the point when you will see, that you are able to do more things than healthy people - at least I am now. Because, as said healthy people just live their lives, while you will know what you are able to do with your present capabilities at any moment.

    Another thing was stopping to think about the fact that I feel bad. It was in my head all the time. Then I read an article in "Psychology Today", that calling things good or bad is not such a good idea. Life is not black and white. Over the time I erased from my head phrases like "I feel bad", "I feel ill" and the like. They are of no use, they add more depression. When I am willing to consider my mental state or health state, it goes like this: "Ok, I got a bit unhappy because of this and this, and it is normal, it will pass or I need to cry a bit now", for the health state it could go "I have pain there and there, my fog is 20 percent". Nor good nor bad, bearable, I conclude.

    And then there are treats. There are many ways to treat yourself, but most of them are dangerous. Like for example sweets. I feel very dizzy after ingesting them. Or a bath is very tiring. But sometimes I anyway do those to feel better for a moment. I haven't discovered any healthy treats. Although computer games were ok to calm down anxiety and erase any thoughts from my head.

    From my experience, it takes about a year to stop thinking about where did I go wrong or blaiming someone, including yourself.

    So, I hope this will be of some help to you. So every night you can think - nice, one more day passed, because as we are all saying here, time helps. You should be worried though if the time stops :)
     
  14. Nielk

    Nielk

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    Lucy:

    Just finished reading your reply to Roma. What a thoughtful post full of great advice!
    It's giving me some thoughts as to how to get a handle on this.

    It's a novel idea to me not to label feelings as good or bad. I think if I'm able to do this, it would help me.
    You are right, we are in for the long haul and any "tools" we can use to make it easier on us should be used.

    Refining our goals in life is also very useful. I'm going to try that too.

    Thank you for your post.

    Nielk
     
  15. roma

    roma

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    Thanks a lot for your kind words and your support guys, it's really scary to see how my life has changed before my eyes so much in just a few months, but what's even more scary is having all these symptoms and not knowing exactly what they mean, all im thinking is what damage this thing is doing to my body and how worse it might get, every morning after i wake up i feel great almost as i didn't have anything, but a few minutes go by and my brain starts waking up and i start feeling sick again and it goes like that for the rest of the day, i know that i will have to adapt to this new life and time will help but sometimes i think about how much time do i really have before i get a lot worse, i seem to have progressive brain demyelination just last night i was feeling numbness in my left hand and my left foot also i couldn't move my right arm all the way up to my head to scratch this damn itching so it is really scary to think about those things, i know it helps when you clear all those negative thoughts out of your mind but im having a really hard time doing it and i have too many reasons, to begin with i live by myself i work a full time job and i was supposed to go back to school this fall but for financial reasons i couldn't, i have no family around me the closest family member i have lives 900 miles away from me, i don't have that many close friends and the ones i do have been drifting away lately because they have noticed the change in me, i work at a very fast paced job where i have to do a lot of physical work and i have already been giving a warning because i can't work fast enough and since i don't have an official diagnosis i can't bring any papers to work from my doctors, literally any way at look at this situation just looks horrible, it's just so hard to believe how much my life changed and how much i can't do anymore, just last year me and my ex drove 20 hours to go to Florida nonstop 20 hours with no sleep, just this year back in April i went to visit my parents and i took them sight seeing to many cities they had never been too, i was driving non stop for long periods of time, right now i can't even drive for a full hour without feeling like im gonna fall asleep, everything is so fresh all those memories are here present with me, sometimes i think im gonna wake up and realize all this has been nothing but a nightmare and the worse part is that it has been 4 almost 5 years since the discovery of this new pathogen and i can't believe we are still at the diagnostic stages, i can't believe there are people out there that are still denying that XMRV is real i just don't get it science and history do not lie, i think a five year old could put two and two together better than some of these brilliant minds running the CDC.
     
  16. caledonia

    caledonia

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    Hi Roma,
    Since you're still working, but starting to experience trouble with your job, you should check up on what kind of disability insurance you have. You may have short and long term disability through your work, state disability, and Social Security Disability. You can ask HR or check your paystub. If you see little deductions marked STD, LTD, and FICA, then you have short term, long term and SS disability coverage available.

    There are only 5 states that have state disability, I'm not sure if Illinois is one.

    If it comes down to it, don't quit your job and don't go to a part time schedule. Go out on disability if possible. Disability is based on a percentage of your income, so if you go part time, it will only be 30-60% of your part time salary, instead of your full time salary.
     
  17. Dreambirdie

    Dreambirdie work in progress

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    Thinking about what makes my life worth living... when I feel better I do any kind of art I can--drawing, painting, singing, making video. Being creative is such a relief and release. I don't do it for the sake of making something pretty and aesthetically pleasing, though at times it will come out that way. I do it more for the true expression of whatever I am feeling in that moment, no matter how painful, sad, angry, anxious or depressed I am. I find that being true to my feelings, through my art, is what helps me be with them, accept them, and ultimately move beyond them. It's a weird thing, how accepting what is, often changes what is. I have done it many times, and still don't quite believe it... and have to re-remember each time that I do do it. Engaging in creative work, particularly painting, is what usually gets me there.

    On days when I feel much too horrible to do any kind of art, I curl up in bed and disappear into my daydream fantasies, which I have gotten very good at over the years. This is more like internal creativity. I highly recommend it. It works for me.
     
  18. Sushi

    Sushi Senior Member Albuquerque

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    Also, Roma, there is a good doctor in Chicago who is experienced with ME/CFS and could give you a diagnosis. PM me if you would like to pursue this.

    Very best wishes,
    Sushi
     
  19. markmc20001

    markmc20001 Guest

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    Hang in there

    Hey Roma,

    Sorry to here you are having trouble. Be careful with your Hr department. Human Resources job is to protect the legal interest of the company and save the company money. They might not be so keen on explaining your disability benefits, especially if you are are slowing down at work. I think a disability claim can jack up their insurance rates and it can cost them a pie of money.

    I would find a good doctor ASAP, and maybe even try and get a leave of abense if you need a bit of time to get your diagonosis and head on straight. Don't start working part time, that can screw your potential benefits.

    Also, you may want to try eating good. Think about lots of veggies, chicken, and stuff without chemicals of from a box. It is tough to cook and prepare lunches, but well worth it. Watch out for milk products, wheat, alocohol, lots of caffine, and sugar. Wathc out for MSG, transfats, preservatives, and food coloriings. Any kind of foreign substance that can put a burden on yor immune system.

    Maybe take a look at Rich Van K's simplfied methyaltion protocol(inn the detox forum) for a safe vitamin treatment if you want to try some vitamins. Just take it slow and easy, but you haven;t been sick long and have a good chance at getting better if you can boost your immune system and remove stress while eating better.

    Good luck
     
  20. roma

    roma

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    thanks mark for the info im actually seeing a CFS doctor already but the thing is that he is so busy he is always booked like two months in advance, my first appointment with him was just to tell him all my info and evrything that was going on, and my next appointment will be in January and i think they already have a schedule for me to try vitamins and some some therapies, i was taking a bunch of vitamins but i had to stop because i really don't know what im doing, i thought vitamins were just vitamins but it turns out since i started taking them i have been to the hospital twice because of kidney stones so im just gonna wait for them to give me a proper schedule, as far as eating i have noticed that lately i can't tolerate much of read meats they make me puke for the last 4 days i have eaten nothing but fruit and veggies but i know i gotta get some protein as well, it seems like my body is asking me for fish for some reason i never used to eat fish and now lately is the only source of protein my body can really tolerate..i will have to learn how to cook as well i never ever cook im used to always eat out, but is gonna stop..thanks a lot for the info.
     

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