Is life worth living with this?

[roma]

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.

i have short and long term disability, but i think for now i can still work and even if i wanted to stop working i wouldn't be able to, i have too many bills and rent to pay and my contract does not end till May so i will have to though it out till May at least and then move somewhere cheaper so i can maybe start working less hours, but really if i stop working i would see no more reason for me to be here, like i said before i have no friends no famili around here really my only distraction is going to work, i think i would get much worse if i was home all the time..anyways thanks a lot for your help.

 

[markmc20001]

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.

Great to hear you have an appt already. Diet and managing stress are kind of like the CFS 101 class. Then learning how to drop unnecessary obligations and baggage. Just drop all the dead weight and forget about trying to impress anybody. Turtle wins the race.

Vitamins is like the advanced class.

Your are lucky to just get this becuase now there are docs that can actually help a little and dignosis you. 20 years ago forget it.

Things will get better, one day at a time and tomorrow will be a better day.

 

[Sushi]

Hey Roma,

The protein issue!

Just be careful about mercury in fish. Mercury is our enemy! You might need to experiment with different protein sources. Organic chicken goes down pretty well for many of us--and then there are high quality protein powders to use in smoothies. Rice and whey seem to be the best for many, though the whey can cause difficulties for some as it can raise your glutathione levels--good in itself--except it can bring too much detox. And some just don't tolerate whey.

If you do go for a protein powder, you are better off ordering a really good one online. Health food store brands are usually not pure enough.

Ah, the adventure of cooking and feeding ourselves!

Sushi

 

[roma]

Hey Roma,

The protein issue!

Just be careful about mercury in fish. Mercury is our enemy! You might need to experiment with different protein sources. Organic chicken goes down pretty well for many of us--and then there are high quality protein powders to use in smoothies. Rice and whey seem to be the best for many, though the whey can cause difficulties for some as it can raise your glutathione levels--good in itself--except it can bring too much detox. And some just don't tolerate whey.

If you do go for a protein powder, you are better off ordering a really good one online. Health food store brands are usually not pure enough.

Ah, the adventure of cooking and feeding ourselves!

Sushi

yeah i had already thought about the mercury thing specially since i recently watched the documentary "the cove" so im thinking i might go with some chicken to get protein that i need it seems to me though that i might be fine eating meats but the problem is that i can't do greasy foods anymore they make me puke, maybe if i try meats cooked in a different way like a stew or something i dunno but i have to figure something out..thanks for all your help.

 

[Valb626]

roma,

I'm sure glad to see you posting! We broil everything (chicken, fish, and a little pork now and then). It's quick and most of the fat drains off. If you are going to put meat into a stew, it's good to brown it in a frypan first, which will get some of the fat out of it before it goes into the stew.

You'll figure out the cooking/eating part as you experiment with what you can handle. And probably what you can handle will change, so it's hard to foretell what's going to go down easily on any given day. I do the shopping for our dinners just about every day, becuz of that.

 

[roma]

roma,

I'm sure glad to see you posting! We broil everything (chicken, fish, and a little pork now and then). It's quick and most of the fat drains off. If you are going to put meat into a stew, it's good to brown it in a frypan first, which will get some of the fat out of it before it goes into the stew.

You'll figure out the cooking/eating part as you experiment with what you can handle. And probably what you can handle will change, so it's hard to foretell what's going to go down easily on any given day. I do the shopping for our dinners just about every day, becuz of that.

yeah it seems like i will have to start asking my mom for some recipes she also shops and cooks everything fresh and from scratch every single day, no cans,no frozen,nothing bagged, everything she uses she buys at the local market every single day...i will also have to start to manage my time better to cook healthy meals.thanks for your help.

 

[Crappy]

roma

Thanks for posting this issue; I think it contains a subject too often ignored. You started something I have an interest in. We may both be sorry :Retro smile:

I didn't want to commandeer your thread so I started one on a subject closer to "right to die" issues.

http://forums.aboutmecfs.org/showthread.php?9132-Is-life-worth-living-with-this&p=144720#post144720

 

[valentinelynx]

August59. Thanks, exactly my thoughts. Wanted to read it but couldn't.

 

[Recovery Soon]

yeah i had already thought about the mercury thing specially since i recently watched the documentary "the cove" so im thinking i might go with some chicken to get protein that i need it seems to me though that i might be fine eating meats but the problem is that i can't do greasy foods anymore they make me puke, maybe if i try meats cooked in a different way like a stew or something i dunno but i have to figure something out..thanks for all your help.

I echo the wisdom of others.

two pieces of advice:
1) Watch out for expensive and far out theories/therapies, which don't make sense in your gut. When I first came down 4.5 years ago, I spent literally tens of thousands of dollars in desperation. Any google search will pull up hundreds of quacks claiming to cure to CFS and they're ALL Bogus. I personally had all the mercury pulled from teeth, which did nothing. You're very vulnerable. Before embarking on any new therapies check for a consensus view here. You'll usually get great advice.

2) I highly encourage engaging taking up MEDITATION. It's absolutely free, and while it certainly will not cure your condition, it will change your relationship to suffering, which means you'll be much more accepting, and even at Peace in the midst of pain and uncertainty. And while I can appreciate you're not wanting to accept it, and just cure it, the reality is not likely to happen in the short run (though, with the emerging science, a couple years off might be possible). Viewed from a certain lens, CFS can can be a catalyst for advanced spiritual growth. And even if spirituality is not your thing, meditation will make your experience much more bearable than it currently is.

Also- I advise the Gupta Amygdala Training program with one caveat- although he heavily implies it is a cure- it is not (though a small few have said they were cured from it). It is however, a very effective mind/body approach for dealing with CFS, that will ease the constant flooding of "What if" thoughts that you are currently experiencing, which are exacerbating your symptoms.

Hang in there. One day there will be a cure. I'm not convinced any permanent damage is being done. I personally believe CFS is just massive inflammation, and we will return to complete normal one day. Even those who have suffered for decades.

Best of luck.

 

[Tia]

Hey Roma,

Your situation sounds similar to mine: I to am alone, no family or relatives, live alone and don't have many friends. I can almost feel your fear of being bedridden with this for a long time, i have the same. It would be our worst nightmare come true, no?

Don't know what gender you are but I'm female and have had this since birth. You are MORE than welcome if you want to talk via messenger with me, maybe I can soothe somewhat?

I couldn't agree more about working for as long as you can since it really helps the loneliness and getting out and get that social connection with others. I used to work part time and the loss of that job (same as yours, I came in late everyday and was too slow) made me get really anxious again, i felt WAY better while I had the job, I am now on fulltime disability. So work fr as LONG as you can, this little something that gets you out among people as you say could very well be your lifeline and if u lose this job, PLEASE apply for a new with fewer hours because it IS betetr for our psyche to be amongst others.

In the meantime: LOADS of cyberhugs for you, DEAR dear friend in this. And oh: keep in mind, ALWAYS keep in mind that they're working on treatment for xmrv now. WE SHALL OVERCOME.:victory:

 

[roma]

I personally believe CFS is just massive inflammation, and we will return to complete normal one day. Even those who have suffered for decades.

Best of luck.[/QUOTE]
Nohing would make me happier then going back to normal, i have come to realize that we don't really need much to be happy in life, everything that used to be important before i got this, is now irrelevant nothing really matters right now, except for my health, my coworkers keep asking me what i want for xmas i tell them that the only thing i need to be happy is to be healthy nothing else matters, i now understand why everytime i call my dad and i ask him how he's doing, he tells he's fine he always says as long as i have my health i don't really need anything else, i get it now, he's had diabetes for around 30 years but for the last 10 years he's been really stable so he's happy about that i never used to pay attention to those intelligent words but i do now, most people are really shallow and superficial and worry about having material things and really the most important things in life are those things that you can't buy, like health, family,friends,love,even your favorite food plays an important role in your life, lately i think about things i used to be able to eat all the time and my mouth gets all watery just to think about those things and it's really frustating that i can't even eat my favorite foods anymore because some of them make me puke... i really hope a cure comes soon or at least good treatment that would allow us to have a close to normal life i can adjust to changes as long as they help me feel fine and healthy, i have been doing some research and it seems that Emory University in Atlanta is already working on making XMRV and MLV's specific drugs they have been doing their own independent studies with macaques and they have already inlcuded XMRV in their infectious disease list also the university of Missouri is working as well on drugs that could inhibit XMRV from reproducing itself. Hope Hope Hope..

 

[andreamarie]

You have mentioned many symptoms. You and I assume they're related, but when I applied for disablility I never mentioned CFS even though I had a firm diagnosis. I listed all my illness's seperately. I don't know what your job is but H.R. may try to make accomodations for you. I worked too long; I'm convinced if I had stopped earlier I wouldn't be sick for so long.

Suicidal ideation is common with ALL chronic diseases. I had it much more with interstitial cystitis than any other illness I've had. When I feel it coming on I remember my brother who died at thirty and my cousin (who was like a brother) who died at forty two. They'd exchange life for my disability in a second. Please try to write in paragraphs; we want to help you but it's hard to read.

 

[roma]

You have mentioned many symptoms. You and I assume they're related, but when I applied for disablility I never mentioned CFS even though I had a firm diagnosis. I listed all my illness's seperately. I don't know what your job is but H.R. may try to make accomodations for you. I worked too long; I'm convinced if I had stopped earlier I wouldn't be sick for so long.

Suicidal ideation is common with ALL chronic diseases. I had it much more with interstitial cystitis than any other illness I've had. When I feel it coming on I remember my brother who died at thirty and my cousin (who was like a brother) who died at forty two. They'd exchange life for my disability in a second. Please try to write in paragraphs; we want to help you but it's hard to read.

from now on i will write in paragraphs to make it easier to read.. i haven't been sick for long only about 8 months and none of these problems i had before in my life i didn't even knew they existed like brain demyelination i never even imagined something like that could happen to a human being i know all my symptoms are related every single one.

i can still work, a lot slower than i used to but i can still do it, some days i feel "fine" as in not too much inflammation in the brain but some other days like today the inflammation is so much that a few ibuprofen pills barely take the edge off. i was also taking lots and lots of vitamins and supplements, most of them are what people in this forum take but i stopped because in the last 3 months i have been to the ER twice because of kidney stones and i have noticed the change, the things that i was taking were defenitely helping a lot so now im waiting for my doctors appointment so they can give my a proper schedule and hopefully vitamin shots instead of pills.

As far as the disability situation i really don't know how it would play out for me because i barely started working full time a few years ago, i was living overseas and came back to the states in 2006 and didn't actually started working full time until 2007, i don't really know how the disability thing works but since i have only been paying taxes since 2007 don't know if i would even qualify for disability benefits.

 

[WillBeatCFS]

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.

Easy work around: copy the post, paste into Word (or other similar program), add spacing. Voila. Brainfog compliant text!