The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

How do you all stay alive without enough finances or help/care from others?

Discussion in 'Finances, Work, and Disability' started by enginewitty, Mar 20, 2016.

  1. enginewitty

    enginewitty

    Messages:
    51
    Likes:
    64
    Simple question.
    How do you all stay alive without an income or help from others?

    I'm in this situation now and don't see any options other than starve or suicide. Not interested in either. seeking other options.

    Andy
     
    ebethc, Dainty, Misfit Toy and 14 others like this.
  2. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,564
    Sth Australia
    Jail is another option other then starve and suicide.

    I've chosen jail to try to get a much needed rest at times cause my life is so hellish as I cant do a lot of very basic stuff which is usually viewed as essential. Jail isnt a picnic in the park but in many ways can be better then being at home if you cant cook, struggle to get drinks etc etc. If you are so sick that you are bed bound or home bound, its not like we get to do much anyway so its only a slight step away from that to be in a jail cell (many a time when Im bed bound have I seen my bedroom as like a jail cell anyway.. a very lonely one at that, it's far less lonely for me in jail with the bonus of not having to do housecleaning or worry about trying to pay debts).

    I know its crazy but there is very little in the way of options for us, I guess another one would be to do something to put one into hospital to be looked after there. (that's a worst option for me then jail as it would have to be something quite dramatic to keep one in hospital for a while to get a rest and try to recover from this dreadful illness.

    At one point I was wondering how I could break both legs to be able to get a rest in hospital cause I was just that sick and exhausted and so not coping at home (i still dont cope at home, my house is terrible, Im living in squalour).. if I could of brought myself to do it in a way which wouldnt have injured the rest of me, I would of done so.

    the sicker and more care we are needing, the more desperate our measures to get what we need may become... for many of us it is suicide (I've tried that too as an escape from things and ended up in the ICU.. I was in hospital recovering for a week as the suicide attempt lead to double pneumonia.. Interestingly compared to having ME, having double pneumonia wasnt too bad).

    Im surprised Im still alive due to all the issues ME has given me and the lack of help I get puts my life at risk a lot eg last year I lost balance and nearly fell into a hot oven and back when I could still drive, I was forced to drive under threats by social security centrelink of having my payments cut off which resulted in two car accidents as I was far too tired and unwell to be driving. My life ends up at risk at lot due to this illness (I leave my cooking pans on all night quite often)

    as far as income goes, You need to get yourself onto a disability pension even if it nearly puts you into the grave to do so. i had to go throu 3 appeals to do that and my case ended up being heard in another state as so many where I are were so biased towards the illness of ME/CFS.

    anyway, a disability pension is the best option if you are able to take care of yourself enough that your life wont be in danger due to not receiving enough help.
     
    Last edited: Mar 20, 2016
    panckage, Karena, merylg and 5 others like this.
  3. Jennifer J

    Jennifer J Senior Member

    Messages:
    780
    Likes:
    3,948
    Southern California
    (I just wrote what's below, and reread your post and it said without help from others. I'm not sure if it's because you don't have the help of others or your not comfortable taking the help from others. Some of what I wrote does include finding help from others. It's hard but survival sometimes necessitates it. I know. I've always been extremely independent. Worked as a child to pay for things. I cried when I had to apply for food stamps . It was so humbling. Accepting help from others was hard and still isn't easy the times it comes my way, yet I'm so grateful for it.)

    I lost some of what I wrote so I hope this isn't too disjointed as I try to rewrite those parts.

    Andy, I'm so sorry. This illness is so hard to begin with and then to not have enough money to eat or afford a place to live on top of it. Here's a little of what I went through if it may be of help with some suggestions and ideas for you below.

    Being in a new city, sick, deathly allergic to cats (which everyone I knew had), and a family who didn't believe I was sick and thought helping me would be enabling me, I went through several years not sure how long I was going to be able to stay housed. I remember looking at abandoned houses and buildings when I was on the bus and making a note of them, that it might be a possibility of a place to live. I wouldn't be able to stay in homeless shelters due to the extent of my health and abilities, if they even had room for the night, and most of them you had to be out in the morning . Sometimes if I had enough energy, I would go to homeless dinners.

    I'm not sure where you live or how much health you have. I'm not sure what programs they have to help with housing, cost of things, food or disability where you are or if you can get some where they have more. If you say what country you live in, state and the city if you are comfortable, people here might be able to point you to resources and ideas in your area.

    I had charge cards initially while I fought 7 years for my disability. I kept making minimum payments and kept taking money out of them and increasing my credit line so I could live. I lived like a pauper to stretch it as long as I could. I was thinking I'd be able to go back to work at some point and pay them off, or my disability back pay would cover it. After that, mainly "the kindness of strangers" (thankfully) helped me minimally to keep me housed (in a room in a building with shared bathrooms ) until my disability came through. (I'm still there now.) Amazingly most of the people that have helped as they could were barely surviving themselves.

    I know a lady with ME/CFS that lives in a trailer with her boyfriend on the streets. Some people with vehicles were living in Walmart parking lots or out in the desert. Ideas I've thought about . Some cities have programs where you can live with older people. What would be expected of you and cost could be worked out. Maybe someone only needs someone there for safety reasons and in exchange you can not pay rent.

    Someone also recommended back then for me to go to support groups if I could, when I could. Even groups like the various Anonymous groups (AA, Coda...), because people there would most likely understand the predicament I'm in, have empathy, and possibly could help me out.

    Are there social workers where you live? They could help with some resources. I know they might not be able to do much. At the least I would hope they could help you get food and on any housing waiting lists, help applying for disability, and possibly some monthly money until you can get disability. We can fall through the cracks with ME/CFS, having other things going on can get you more help some times. Hopefully, there's help for you where you are at.

    If you can get some kind of minimal money, maybe you can share a room or a studio with someone until your disability comes through. I'm not sure how your health is and if that would work for you to hold you over.

    I hate that you are going through this. I wish I had a yard and ideally a house and money so I could help you and others. I hope some of this and the suggestions and experiences of others here may help you, and that you'll find good housing and be able to get help with food. My thoughts are with you. I wish I could do more.

    One more thought just came to me, I'm not sure if you are in the U.S. Someone on our forum posted a while back that he had some land if anyone wanted to stay there. I think it was in the New England area.
     
    Last edited: Mar 20, 2016
  4. 5150

    5150 Senior Member

    Messages:
    316
    Likes:
    218
    You must get accepted for a form of disability that provides monthly aid. If you are too sick to work as most are, you have no other choice (imo). What level of functioning are you? If you can't work and there are no caring, rich relatives (99% of patients), you have to get that aid. Perhaps a lawyer will take your case based on your awards? and his% of it.

    All the best to you.
     
    *GG* and Jennifer J like this.
  5. alex3619

    alex3619 Senior Member

    Messages:
    12,264
    Likes:
    33,678
    Logan, Queensland, Australia
    Where you are in the world, at least which country, alters the specifics of the advice given.

    You are living the concern of all of us. Even those on state pensions are one legal bill away from losing them. Private pensions/insurance are one administrative decision from being revoked. Only those who are sufficiently wealthy to retire have any certainty.

    I hope you find the advice you need here.
     
    nenej2015 and Jennifer J like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,943
    Likes:
    22,141
    USA
    Agreed and if you provide that info, we can help you better. If you are in the US, I can give you the name of an excellent disability attorney that you can consult with over the phone (for free) re: your case. They only get paid if you win SSDI and get nothing if you lose.

    Outside of the US, there are many on PR in other countries who can advise you. Best wishes moving forward.
     
  7. Rvanson

    Rvanson Senior Member

    Messages:
    101
    Likes:
    127
    USA
    I have applied for SSDI, since my CFS/ME came back and hit me hard in 2014. I got sick with it in 1996, about 5 hours
    after eating at a restaurant with my ex-GF and friends. I have been denied twice already by SSDI and have to wait 15 months to see an ALJ for the final determination. I have an attorney, so they will be there when I go to the court anyhow.

    I really dont think I will be "rewarded" it since I was able to work after a year of being very ill with it. I am also a man, so that goes against me as well, along with my work history. I am older now, and I was never able to fully recover enough energy to
    do anything but work, (I used to race motorcycles and ski) and laid low on weekends to enable me to work for the next week.

    Barring that happening, I will take my early retirement SS money at a 25 percent loss and live frugally as I have done for many years now. "Normals will never understand we with CFS/ME
    go through, until or unless a real prove non-psychological, physical test can be found to explain it to them, IMO. To them, we are lazy bums who dont want to work/or it's "all in our heads".:(
     
    Last edited: Mar 21, 2016
  8. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,086
    Likes:
    43,909
    Like the 2 day Cardiopulmonary Exercise Test (CPET)?
     
    beaker, waiting, PennyIA and 2 others like this.
  9. Rvanson

    Rvanson Senior Member

    Messages:
    101
    Likes:
    127
    USA
    I dont think that will be enough for the non-believers. Not in the US anyhow. They want to point to a virus, prion, or bacterial test before they believe in CFS/ME. You have to understand that in the USA, everything medical is profit
    driven, even with "Obamacare". Its not at all like European countries where your healthcare is usually paid through your
    taxes, and is available to everyone, working or not. The premiums here are astronomical, as well as the deductibles.
     
    nenej2015 and jimells like this.
  10. alex3619

    alex3619 Senior Member

    Messages:
    12,264
    Likes:
    33,678
    Logan, Queensland, Australia
    Its in the US that the two day CPET is proving invaluable. Its winning court cases, quietly, according to what I hear.

    The confusion is this. We cannot use the two day CPET to prove someone has CFS or ME. What we can do, without dispute, is demonstrate severe disability. Its a slam-dunk. There will be a small percentage of cases who do not show as disabled in this test, which will imply a probable misdiagnosis.

    Its like the difference between proving CFS and proving the diagnostic features of CFS. From 1940 we have had the tilt table test, which can show orthostatic intolerance. From 1946 we have had the quantitative EEG, which can show severe brain dysfunction. From 1949 we had CPET, which can show massive declines in physiological energy capacity. Now the evidence needed to know to use those did not really appear, at least with CPET, till 1956, on publication of papers related to the Royal Free Hospital outbreak. We are still, even now, trying to validate these things with respect to CFS and ME, with extremely limited budgets. However these are old tests, and well understood. The TTT entered the research on CFS in 1995, the 2 day CPET in 2007, and the qEEG is currently in very early stages of research and publications.

    I would also like to add a sleep study to that list, but I do not know when those started, or started with older forms of modern technology.

    In addition there are a host of other tests that need to be done to rule out other diagnoses. Some are expensive. If you lack funds you might not be able to do them, which is a big issue for many of us. We are expected to have run the appropriate diagnostics and yet we often do not have the resources to do so.
     
  11. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,086
    Likes:
    43,909
    The single day CPET is quite sufficient to prove very poor cardiac or pulmonary function already. It's the gold standard in proving such disability, and has been for quite a while.

    Mild ME/CFS cases might have a score overlapping with the scores which result from deconditioning. But lower scores cannot be attributed to deconditioning. And the 2nd CPET 24 hours after the first one will show a significant reduction even for milder ME cases.

    If doctors or judges exist who debate the accuracy or applicability of a CPET, I haven't heard of them. People do win cases with the CPET, or the two-day version when necessary. Some might debate whether or not ME is specifically diagnosed via the 2-day CPET, but that is not the issue at hand - merely proof of disability.
     
    enginewitty, picante, jimells and 4 others like this.
  12. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    2,302
    Likes:
    2,220
    US
    A lot of patients have to go live with their family (or never move out). Some are supported by their spouse/boyfriend/girlfriend or family. (Sometimes they have to stay in an unhappy relationship just to have a place to live.)

    Some borrow a lot from family or friends.

    A lot of patients do some part-time work, but many make under $100 a week.

    Some get on SSI or SSDI or disability through work.

    Some patients get Section 8 housing, but most people can't because the waiting lists are too long. Some live in shelters or couchsurf. Some have a good friend that gives them a discount on rent, or free rent. Some patients live in their cars, a shed/trailer, or the woods. Or their monthly housing costs might low if they were able to buy a mobile home or a cheap older house (usually in a bad area).

    They might be able to work instead of pay rent, if they find the right situation. Most patients can't do this because of not having the energy. Also, many situations are only temporary or part-time.

    Some patients take a housemate or more than one. In the right living situation, they might even live rent-free (usually needs at least 3 housemates).

    Some do crowdfunding while waiting for disability or diagnosis/treatment.

    I've met patients who busked (both of them were musicians).

    A lot of patients don't get ill until they are over 35. By then they might already have some things like a house or nicer car. A lot of patients have to sell their house, car, and other things to get by. (Usually while waiting for disability, or while they try treatments, to get healthy enough to work more.) Also if they have built up good credit, they might be able to borrow a lot from banks.

    Some were already good financially before they got sick. (Passive income, inheritance, already own real estate, etc.)

    Not many patients do this, because you usually need a solid diagnosis, but some types of patients can get in paying clinical trials. Most trials don't pay enough to live on, or last very long, but some do.
     
  13. Rvanson

    Rvanson Senior Member

    Messages:
    101
    Likes:
    127
    USA
    Valentijn:

    I have not been aware of, or told of this CPET test before. I will study it and bring it up to both my SSDI attorney and my CFS/ME IRL support group. Apparently no one seems to know anything about it, as it's never been mentioned before.

    I have been long aware that my capacity for anaerobic exercise became much better after my CFS declined after the first year, but aerobic exercise does nothing but weaken me and sets off pain in my muscles, as well as the fatigue.

    Thanks you all for pointing me to this CPET test. If I am "rewarded" SSDI, it will add a small,but nonetheless significant additional amount of money to my Social Security income, beyond what I would have been allowed at early retirement. .
     
    enginewitty, Amaya2014 and picante like this.
  14. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    Being older actually helps when it comes to Social Security disability. I don't believe that sex is relevant. SSA actually recognizes that older workers' bodies get worn out from work and illness. Hard to believe but true. I was still working part time when I first applied, but unable to work at all by the time I was scheduled for the Administrative Law Judge hearing. What is most important for us is written statements from physicians that our impairments stop us from working any full time job found anywhere in the US economy. Without a supportive physician or two, we are sunk.

    In the end I fought for six years to win my claim. It took me four or five years just to find a supportive physician. So I guess if there had been an ALJ hearing after just two or three years my claim would've been denied and I would've had to start all over again after finally finding a helpful doctor.
     
  15. *GG*

    *GG* Senior Member

    Messages:
    6,089
    Likes:
    4,671
    Concord, NH
    Here is a link and article:

    http://forums.phoenixrising.me/inde...e-test-for-assessing-diagnosing-me-cfs.31059/

    http://phoenixrising.me/archives/11921

    GG
     
    enginewitty and Rvanson like this.
  16. Rvanson

    Rvanson Senior Member

    Messages:
    101
    Likes:
    127
    USA
    From all I have heard, read and know over the years, men in general are discriminated against when it comes to
    SSDI for disabilities that are not readily identifiable. I am not a person who is politically correct and I dont pull any
    punches, so when it comes to obtaining SSDI, women have it vastly superior to men. No, if's and's or but's about it.

    Yes, there was a time when men had a much better chance of obtaining SSDI, and a few of them are in my support
    group, but with the slew of new applications, due in part to the massive unemployment in the US, which is not spoken of much on the "news" (mainstream radio and TV) Social Security has clamped down HARD on new applications.

    The simple fact is that I should have applied for SSDI back in 1996 when I couldn't work at all, but I didn't. It's not in my
    nature not to work, so when I could, I did. After the ME/CFS came back and bit me in the arse in 2014, after aging out another 17 years and pushing myself past the limits I should have set for myself, I relapsed and its not getting better.

    My current HMO doctors, who dont believe in men with CFS/ME have been less then helpful, so that won't help my case any. I can just see the ALJ telling me that since I was able to work FT for 17 years, I can still work FT now.
     
    enginewitty and Marco like this.
  17. MikeV

    MikeV

    Messages:
    18
    Likes:
    34
    Napa, California
    I am 48, live in California USA, and had a long consult with a CFS experienced disability attorney last October about SSI. He said, "Yes, people with Chronic Fatigue Syndrome are getting benefits."
    HOWEVER, He told me not to expect anything before I was 50. As far as SSI is concerned, 50 is a benchmark year; your chances improve significantly after this. Other points he stressed:
    1. barring a miracle, you WILL get denied the first one or two times and must appeal
    2. you MUST have ongoing historical medical documentation
    3. you must have a sympathetic doctor on-board who will give you a concrete diagnosis
    4. you should not have been working full time within the last 16 months
    5. signed testimonials (that you are impaired) from friends, coworkers, employers help your case significantly

    He did not mince words; if ongoing medical documentation is not taking place, it will be practically impossible to get benefits.
     
    enginewitty and Valentijn like this.
  18. Rvanson

    Rvanson Senior Member

    Messages:
    101
    Likes:
    127
    USA
    I know of several women who are on SSDI, but that was for Fibromyalgia, and they were all able to be approved by the second appeal well before being anything close to 50, which I was already turned down for by the SSDI administration.
    None of them is bed-bound at all, but then they didn't go back to work after recovering enough to do so, like I did. I was raised by a workaholic father at 14, and I would much rather be working full-time, but that's just not going to happen.

    As to finding doctors that believe in CFS, I have visited several over the course of my illness but not since 2010. I simply dont have the money to waste on more useless tests that accomplish nothing, and no "treatments" that don't help, beyond what I myself have found on my own. I never married; my parents are both dead; and I learned a long time ago that no one will hire a man like me, if I informed them that I had a chronic illness that might well come back in force as it has, so co-workers and employers are out of the equation. There will be no signed testimonials for me at all.

    It would appear that my age is the only thing I have going for me IRT obtaining benefits. I suppose I could bring my old motorcycle racing trophies to the ALJ hearing, but how would that prove that I can't even ride anymore? Those were all won before I contracted CFS/ME in 1996 and would prove useless. Like I implied, if I was a woman I would likely have little trouble being rewarded an SS Disability income. In America, men are not supposed to get sick and no woman will come near a man like me, which is one reason I am never married. We men are supposed to die of illnesses, not live.
     
    redrachel76 and TiredSam like this.
  19. *GG*

    *GG* Senior Member

    Messages:
    6,089
    Likes:
    4,671
    Concord, NH
    Just wanted to say to you @Rvanson I so relate to this post! I am working on disability now but am trying to get it via a State that I worked for. I did not pay into Social Security while working for the state, so if I have to resort to SS(D)I I will be in very bad shape, think I would get about $700 a month?

    My father was a workaholic as well, but mine are still alive so I am able to stay with them while this plays out. I never married either, no kids, so don't have stress from that.

    I had trouble understanding my illness, so it did not help me in the workplace, so doubt I would get many "referrals" from co-workers as well. Although i could be pleasantly surprised with that?

    GG
     
    Rvanson likes this.
  20. IntelligentImpulse

    IntelligentImpulse

    Messages:
    36
    Likes:
    21
    I'm really sorry to hear you're in that situation, @enginewitty. If anything, I'd look into social programs designed to help people in need and re-integrate them via help with job searches. I've had CFS for awhile but I fought it tooth and nail to make sure it didn't hinder my working hours before I retired.

    There's only so much one can do but sometimes forcing one's self to actually go out there and try to work like a normal person is the only option we have (or give in to it and whither and die/depend on the mercy of others).
     
    enginewitty and *GG* like this.

See more popular forum discussions.

Share This Page