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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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ME/CFS and the Poverty Diet

Discussion in 'Phoenix Rising Articles' started by Mark, Jul 25, 2013.

  1. Jody

    Jody Senior Member

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    I would like to be able to be vegetarian, used to be able to eat cheese and other dairy, and eggs. Could never go the vegan route but I'd like to be able to quit eating meat. However, I can't handle most dairy and a decade ago I suddenly developed a reaction to eggs. I can't handle nuts and legumes at all.
  2. Valentijn

    Valentijn Activity Level: 3

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    I used to cook with coconut oil, but since I've been sick I've been doing a ton of coconut cream based sauces. It works very well for asian flavors of course, but it also does nicely for more western dishes, such as going for a Stroganoff or creamy tomato dish. So maybe it's possible to get the benefits of coconut oil that way, without the upchuck factor :eek:
    Jody likes this.
  3. golden

    golden Senior Member

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    Food bank rules over there sound much better...


    These days, I get nightmares from the word 'Help ' - We want to 'Help ' you ... lol

    I have only sobering thoughts on 'do gooders ' too. Bit grumpy about the subject.

    I think do gooders are mostly in it to give their ego a massive boost, to be superior or to get into heaven or something .
    But not much thought has gone into the wisdom of giving.

    We have people handing out free flip flops to drunken people out on the town r the weekends for example.

    There are countless Charities now who have done considerable damage all over the world.
    There was even a documentary on this from disillusioned charity workers.


    When is Helping actually Harming?


    I bet some people are thinking...

    beggars cant be choosers

    you are ungrateful

    you should be pleased with ANY help

    and so on.

    But the bottom line is I have a neurological illness. I need a special diet. Benefits were blocked to me. No-one offered REAL help.
    beaker, jimells and Valentijn like this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    You are embarrassing me now, Jody! :redface:

    It's just a survival instinct. Many of us have clearly been through similar, including you.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I just think they don't have a clue. I couldn't get a bus pass because I didn't have the right disability or the right benefit! I couldn't get help with winter fuel costs because I didn't receive qualifying benefits. I was (and am) on Working Tax Credit with a disability premium, because I want to work and have been doing my best to do so. You'd think that would be rewarded more. Another bizarre thing with the Working Tax Credit is that you get more if you work full-time. But if you can work full-time you are less likely to need it! With the new Universal Credit that is being phased in, I understand that self-employed recipients will be expected to be earning the minimum wage after a year. Disabled people have been pointing out that many disabled people will not be able to build up a business that quickly. And again, if I was earning anything like the minimum wage I would not need benefits at all!
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Bread was my favourite carb, and it took me some time to find gluten-free bread that I liked, but I have now, and am OK with an occasional sandwich or roll.
    Jody likes this.
  7. Ema

    Ema Senior Member

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    This whole article makes me feel so sad. Sad at the struggles people are forced through, sad about the state of our food supply, just sad, sad, sad...

    Ema
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  8. Jody

    Jody Senior Member

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    I know what you mean, Golden.

    And gratefulness or lack of it does not come into this mistrust of "helpers" nor your dissatisfaction with the little help aimed your way.

    We have a neurological illness, as you said. And we are human beings.

    Beggars can't be choosers? Sometimes circumstances make that true. But that doesn't mean we don't know how things should be, it doesn't mean that we can't be angry at being dismissed and abandoned at the most basic level.

    I was pleased to have any food to eat. But I was not pleased that it was mostly food that would make me sick and fat. I had a right to how I felt. I had a right to want what I needed. I had a right to my opinion about what was being offered up, and I had a right to think that many charities and so-called helpers are idiots or self-serving or incredibly naive at best.

    Whether they think we have a "right" to how we feel or what we think or what we want or not is irrelevant. We do and we claim it.

    I think there are a couple of kinds of helpers. Some are the egotists as you mentioned. Some are well-meaning but know little about what they are trying to remedy and are ineffectual or harmful as a consequence. Then there are some who are conscientious, smart, know their stuff, maybe have been through it themselves -- I think often this is the best kind of helper, one who has been through it.
  9. Jody

    Jody Senior Member

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    Yeah, I've been through it too. And, yes, there is a survival instinct. But there is also a determination to persevere even in the face of insurmountable obstacles. You have that. That should be acknowledged and you should be able to hear that it is seen and recognized.

    We are all friggin' heroes.:)
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  10. Jody

    Jody Senior Member

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    Canada doesn't make any more sense than the UK in these kinds of things. I couldn't get Welfare because I wasn't well enough to go to work, in that situation you're supposed to go for Disability. But I couldn't get a disability pension or the like either because there wasn't enough acceptable proof that I, my husband or my son were disabled. And so we go round and round ...
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  11. Jody

    Jody Senior Member

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    It is, isn't it Ema. I couldn't agree more. I have been fortunate to be able to move on to a more "normal" life, the prospect of future days or weeks without food is no longer the start to my day. But I know it's the case for so many, and that often it would take so little to make a huge change in their lives.

    Where are the philanthropists and benefactors? Where are the champions? For that matter, in many cases -- where are the families of these sick, starving people? There are families that ignore the plight of some of their own because ... why? because it's inconvenient? because it is too uncomfortable to imagine what they're dealing with or to go see them and find out? This makes me furious, makes me want to weep and tear things down.
  12. caledonia

    caledonia

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    Where do I start? I think about these things a lot.

    I've never had to use a food bank, but was close enough to the edge enough times to check out where my nearest food bank was and the rules. It was at a church. It was only open on certain days. You got one bag of groceries. You had to take whatever was offered; you couldn't for example, take out all the gluten stuff and add more gluten free stuff. This food (and I use the term loosely), would have been ok for my BF, but not for me.

    In the US, you can get food stamps (now called SNAP). It's based on income, so all you need to do is show documentation of low income and you're in. You can get assistance within a few weeks and don't have to wait years like getting on disability. You can get up to $200 a month. You get a SNAP debit card, and you go to the regular grocery store and shop like a regular person. I would like to hear people's experiences with this program.

    Next point - with all the GMOs, pesticides, and antibiotics/hormones, the food supply in this country is scary, but so is people's food choices even when they have the choice. I go to the grocery store, and sometimes look at what other people in the checkout line are buying. I am the only one with vegetables. Everyone else has a cart full of gluten and high fructose corn syrup.

    I've started a permaculture garden in my backyard so I can grow my own organic food - can't afford it otherwise.
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  13. Nielk

    Nielk

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    Thank you Jody for your honest down to earth, informative, recounting of the hardships that you went through. Unfortunately, there are so many families affected by unemployment and poverty. This will have a direct effect on their health.

    Regarding your questions about where the champions are, in my community there is a private food program
    organization that provide an deliver weekly packages of food to the needy families. All one needs to do is call and ask to be put on the list. It is all run by volunteers. Food for the week is collected and delivered to the door. At times, it is just left by the door so as not to cause embarrassment to the recipient. The funds for this are collected from community members. It's a beautiful reflection of what a united community can do.
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  14. alex3619

    alex3619 Senior Member

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    My experience of food banks in Australia is different. Some places have free baskets of food you can ask for, most of it packaged. More food can be paid for at a very low rate, to cover overheads of running the food bank.

    One place I used to buy from (at about 20% cost) developed two problems. First, the "fresh" food was typically rotten. It got parcelled up with the unrotten food which meant the OK food had rotting food all over it. I had the experience at another supermarket of frozen cooked meat. On defrosting it was off.

    The second issue is that anything decent donated to them was sold at near supermarket rates. They had gone from a food bank to an expired food supermarket.

    There are three foodbanks in my area, which tells you a lot about where I had to move to in order to afford to pay rent.

    When I calculated a few times what I could eat for the money I was charged, I figured I could do better at a regular supermarket. This depends on which food bank I use of course. Canned goods are usually safe, if you can eat them without running into intolerances.

    The Rudd government here gave a boost to pensions a few years ago. After that I no longer had to rely on foodbanks. Sometimes I go to one when I can walk .... there is one in my street that is good as these things go, but it is maybe a 150m walk each way which I definitely can not do every day, and not at the moment until my left ankle more fully heals.

    On the other hand I once bought a box of frozen pea and ham soup intended for delicatessens. It was much much much nicer than anything in a supermarket, and the whole box (with maybe six or eight portions of soup) was $5. Another time I got frozen meals from a restaurant at almost nothing costwise ... red curry duck from a thai restaurant! Sadly these are the only two good buys that stick out in memory despite using food banks for years.
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  15. Jody

    Jody Senior Member

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    Caledonia,

    The food stamps sound good, if it works the way it is supposed to. There was a program in the town where I live which we were able to use for several months which provided gift cards to one of the local grocery stores. You could buy whatever you wanted with them, they just asked that you bring in the store receipts when you came to get your next month's gift cards. That felt better and meant you could get what you needed.

    I agree with you about how much toxic junk so many people seem to eat as a steady diet. Even when they don't have to. I don't understand it either.

    I have a very small garden this year. A bit bigger than last year's. Maybe next year's will be a bit bigger yet.

    Some yellow and green beans, a couple of tomato plants, a pot of chives, some cucumbers and squash plants. Most are in pots because I am not physically able to get down in the dirt and do the kind of digging needed. This seems to be working ok.
  16. Jody

    Jody Senior Member

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    Nielk,

    I am happy to hear that there are champions in your community. It sounds like a wonderful program, with a great bunch of workers.
  17. Jody

    Jody Senior Member

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    Alex3619,

    That is VERY different from food banks as we know them in Canada, or at least as I know them at any rate. No money changes hands for food banks as far as I know around here.

    Sounds like it offers some variety in terms of selection and types of discounts.
  18. rosie26

    rosie26 Senior Member

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    I had a memorable experience some years ago. Being delivered a food parcel box one night by some good-hearted people, the funny thing was it felt more like I was opening up a Christmas parcel, there were boxes of chocolates, unusual teas, fancy biscuits, coffee sachets, a lot of the other stuff that was in there I don't normally eat. But I still laugh even today when thinking of that box purely for all the "indulgent" things that was in it.

    I am lucky that I can have a vegetable here, It's very hard on my ME keeping a garden but I try to give myself a time limit of 10- 15 mintues and I try to do everything carefully so as not to use too much energy, as in sitting down in the garden to weed instead of bending or squatting etc.
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  19. alex3619

    alex3619 Senior Member

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    The reason for the costs associated with food banks here is that they have basic functions fully funded and are not themselves reliant on charity, though I think many of the workers there are volunteers. They have large walk-in freezers, and trucks to go get food from somewhere. This costs money, though not a lot. Some of the church charity groups do seem to be a bit more like the Canadian experience though, but they are small, scattered, and not organized.
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  20. golden

    golden Senior Member

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    I am an only child . I only had my parents. They had their own problems which I tried to support them with.

    Ignorance in society and medics compounds these problems. There really was total denial I was unwell.

    As for becoming homeless - I called it traveling. When my tent got too much , I got a lighter tent. When that got too much I got a Tarp :)

    I met some very nice people and there was an aura of serenity during it.

    :)
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