Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Does anyone else worry about money/finances?

Discussion in 'Finances, Work, and Disability' started by Misfit Toy, Aug 1, 2017.

  1. tinacarroll27

    tinacarroll27 Senior Member

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    Yes money is a big worry!! I am also in the UK. I am luck in that I have a few savings but only enough to live on for a couple of months. I am awaiting an ESA assessment at the moment and hoping I get into the support group as I am housebound and bedbound for most of the time but you never can tell they may find me fit for work!! I will appeal and fight back though. It has got really difficult in the Uk to get disability benefits and the situation seems to be getting worse. It is even worse for people with ME who can look normal. We need a change of government and then I will feel safer when the Tories are out. Until then keep fighting them.
     
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  2. Misfit Toy

    Misfit Toy Senior Member

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    I am realizing how many in the UK are responding. Wow. I am sorry for this. maybe not as many in the US have this issue with money.

    @Jennifer J -I can't believe they are raising your rent. Especially with the situation. it's only a room for F sake. A room with rats and asbestos.
     
    Last edited: Aug 1, 2017
  3. Sean

    Sean Senior Member

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    Lack of money and the ever present threat of poverty and homelessness has been one of the most stressful and serious of problems for me. Especially now Australia has a government every bit as cruel and nasty to the sick and disabled as the UK.

    Speaking as a long term resident of the steamy tropics, for those without access to air-con I recommend damp t-shirts or denim jackets without sleeves and a fan, plus sipping on ice water. Need to re-dampen the shirt/jacket every hour or so. But works well.

    I use a large stainless-steel double-wall plunger style coffee press, without the plunger part, for the ice water. Cheap, well insulated (especially if you use the lid), holds a lot of water, and more or less bomb-proof. Buy a large bag of crushed ice every 2-3 days and stick it in the freezer. :thumbsup:

    Only downside is more frequent passing of now warm water.
     
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  4. ghosalb

    ghosalb Senior Member

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    one option will be for 3-4 people to live together to lower housing and car cost.....can also get moral support when things are difficult
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    This is a good option, problem is..I wouldn't be able to live with "well" people. They would have to be ill with this illness or mast cell to understand the complexities of being sick, not being able to tolerate chemicals, etc. I would love to find it. Even put an ad on craigslist looking for housing saying that I have an illness....no bites. Not one.
     
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  6. Valentijn

    Valentijn Senior Member

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    That's just too much stereotype to handle :p But don't forget a hat with dangling corks ... probably generates a bit of a breeze when you move around :whistle:
     
    Last edited: Aug 2, 2017
  7. Misfit Toy

    Misfit Toy Senior Member

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    :rofl: Denim jackets without sleeves. Isn't that the 80's? What decade was that? Also, it's 90 degrees here. IF I lived in a car, which would kill me if that happens, I would be naked. That's the only way it would work in this crazy ass East coast heat and humidity.

    Hopefully no one would walk by and see a naked gal, but, yeah...no.

    I guess it matters where you live. Some locations are cooler. I was just thinking tonight, if someone lives in a car, then they don't have MCAS. I have to "go" to the bathroom now on a regular basis. I can't do that in my car. Today I had to "go" several times. Me and a mini van or a car would not work unless it had a shower, or toilet. So, a trailer might work!

    Thats another thing with roommates. I would need roommates who get the whole MCAS and bathroom thing. The struggle is REAL. :(

    I honestly like the fact that dainty above has this whole thing figured out. It's pretty interesting really. Groups on how to live in a car. IT's good. Support for every situation is out there.
     
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  8. Sean

    Sean Senior Member

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    I live in a tin shed, at the bottom of a hill, on the edge of a swamp, in remote rural Australia.

    What did you expect? :rolleyes:
     
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  9. Sean

    Sean Senior Member

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    Oh, and I had my teens in the late 70s.

    Denim is imprinted in my cultural DNA. Though I draw the line at bell bottoms. Gotta retain some dignity. :whistle:
     
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  10. Dainty

    Dainty Senior Member

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    I'm not trying to convince you to live in a car. But I think it's unfair and a little silly to act as if no one in your area has ever done so successfully. I know several who have.

    Please do not make assumptions about my medical condition. You do not know me. MCAS is strongly suspected in my case.

    It's interesting to me that instead of asking me what sorts of bathroom solutions are available in a vehicle, you just automatically assume there aren't any. I found I preferred a wide-mouthed Nalgene bladder for pee. I always made sure I had enough capacity to last a few days without dumping, because sometimes I wasn't well enough to leave my vehicle at all for several days at a time. The 96 ounce capacity bladders work well and hold a lot!

    Regarding poo, a lot of vandwellers use either a sawdust toilet solution, or the method of tossing right away. I preferred the latter. I have a 1 gallon bucket lined with soft foam pipe insulation to make a comfortable seat. Double plastic bags are used to line the entire thing (including the seat before you sit down). Do your business, tie a knot in the plastic bag, stick it in a brown paper bag to disguise it and toss it in the trash. (Same place dog poop goes).

    Yup, that's what the spray bottle is for! Also, getting hair wet helps a lot. One of my first purchases after I landed the job was a hoody from ExOfficio's Sol Cool collection. It has fancy technology that makes it very cool on the skin. You know that sensation you get when a wet cotton t-shirt hits your skin? And how that goes away within a few seconds as your skin warms it up? When wearing this wet that very cold sensation is happening continuously. It's glorious.

    It's amazing what solutions you can figure out when fighting to survive!
     
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  11. Sean

    Sean Senior Member

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    But that will clash with my denim. :eek:
     
  12. Misfit Toy

    Misfit Toy Senior Member

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    @Dainty -I didn't mean to insult you and I am sorry you took it that way.

    At the time that you say I don't know your medical condition, I must say you don't know mine either. So, when I was speaking, I said "I" don't think I could live in a car. ME, not you.

    I am just saying as a person with MCAS who has tons of diarrhea, can only eat 8 safe foods that have to be cooked, I am not sure I could do a van. It takes too much energy.

    And you are right, I do not know how many people live in cars in my area, but I can tell you they wouldn't survive. I see you are in Seattle. Different there than here. People die around here in their homes if they don't have air conditioning. A car is hot as hell. I get into my car sometimes and feel like I will pass out. My friend from Seattle was here in May and was shocked by the level of heat.

    Honestly, my feelings aren't silly. You are just more aware of how to live in a car. I am not.

    I haven't asked what kind of bathroom solutions are available, because I don't want to know! Fact. I would really prefer to not live in a car and I am not putting down anyone who does. It's just I am too sick to do so.
     
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  13. Basilico

    Basilico Florida

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    @Dainty , I love reading about your experiences living in vehicles. I actually daydream a lot about living in a vehicle, and I think if I were single, I would definitely do it. I've slept in my car multiple times on various trips, but that's when I was young and healthier. Now, I can still do it for a night or two, but my sleep tends to be easily disturbed, so I can't sleep well unless I'm in very ideal conditions (and even then not always well).


    I don't know how anyone would pull this off, but it would be cool for a bunch of folks with CFS and other health problems to share a house to keep costs low. Especially if someone owned a house outright, they could just split the costs of the property tax and utility bills, which could end up being like $100/month if several people were involved. I know that's still a lot when there's no income coming in, but definitely more doable than having thousands in costs per month. Maybe everyone could even cost share a car, as well. I think it has the potential to work well, since everyone would be very understanding about each other's needs. I have a feeling that house would be super quiet, with each person in their own room resting and being in silence!
     
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  14. rosie26

    rosie26 Senior Member

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    If I were on my own I think a boarding house would be the best situation for me. A room en suite would be perfect. I don't mind sharing a kitchen. I experienced living like this when I was in my late teens while living in Australia and didn't mind it at all.

    Easy to clean and if you need some social contact you can go sit in the lounge or meet other boarders out in the kitchen. This really appeals to me as I get exhausted very quickly talking and socializing. So I can choose when to leave my room and then escape back to it when I need to and no needing to constantly explain to a family member or flatmate that I have to rest and stop talking.
     
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  15. Dainty

    Dainty Senior Member

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    I'm glad to hear that was the intent of your post. What I read was, to quote directly, "if someone lives in a car, then they don't have MCAS." That statement did not seem specific to you personally. It very much came across as saying there's no way I - or anyone else living in a vehicle - could have MCAS.

    I hear ya on that. As someone who went several years only able to eat 5 ingredients (and very specific versions of those, prepared very specific ways) I totally get you.

    See, the thing is, people have lived in cars in your area and survived. That's what I'm telling you. I've spoken to them. I'm really close friends with one of them. I know it is possible. I've also lived in my van when it was in the mid-90's here, if not hotter. It's not comfortable, and yes you have to be careful to prevent heat exhaustion. But not survivable? C'mon, spreading misinformation gets us nowhere!

    No, no no no! I didn't at all mean to say your feelings were silly. Your feelings that the heat would not be survivable are TOTALLY valid. Hey, when I was weathering that heat it sometimes felt like I wouldn't survive either. I hear ya on the feelings. Those feelings are real, and I'd never dream of saying they are silly.

    What I did say was silly was to act as though it's impossible for anyone to live in a car successfully in your area. Because the facts are to the contrary. I think it's silly share things that are opposite of the facts, especially when someone might need that information.

    I genuinely do not intend any sort of conflict here, I just wanted to let people know that living in a vehicle might not be as horrible as they might assume. I understand and fully accept that you know what's best for your own situation.
     
  16. Dechi

    Dechi Senior Member

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    I do think about money a lot. Money was never an issue for me. I had a good job and I was self-sufficient. I was single, still am, and could take care of myself well. Now I have no money coming in anymore. Nothing. I have expenses without the means. I am living on my savings and when they're done, that's it... No husband or boyfriend to help.

    When my symptoms rise, I get depressed. And yes, I think about ending my life too. I will not live on social welfare, I just can't even think about being poor, helpless and forgotten. I would try going back to work if I really had to. I don't see how it could work, but I would still try. Even if it kills me, maybe something will happen then.

    Sometimes I hate my life. I hate this illness and what's it's done to me. I don't look sick, but my brain is playing tricks with me and I can't handle any stress. I feel so diminished. :-(
     
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  17. svetoslav80

    svetoslav80 svetoslav80 at gmail.com

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    Yes, I can't work and I'm not getting any disability benefits (because I "look healthy" I guess), and if it wasn't my mother to support me I think I would die of hunger. But she won't be here for me forever, so it's quite realistic that this will happen some day, and I'm really terrified.
     
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  18. kelly8

    kelly8

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    [QUOTE="Misfit Toy, post: 882452,
    Also, how does one shower? The idea of dating with no showering...for me would never work.[/QUOTE]
    @Misfit Toy , I have a friend who did this. She got a membership at a 24 hr gym. She said the membership was cheaper than paying a water bill and she would use the internet there as well. Some of the gyms offer super cheap monthly rates.
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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    @Misfit Toy , I have a friend who did this. She got a membership at a 24 hr gym. She said the membership was cheaper than paying a water bill and she would use the internet there as well. Some of the gyms offer super cheap monthly rates.[/QUOTE]

    Smart! I like this.
     
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  20. Misfit Toy

    Misfit Toy Senior Member

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    I am just seeing this. I love my therapist but she said this to me recently, which sounds just like yours: "MT, you will kill yourself before you become homeless because you won't be able to endure all of the itching and bullshit you are going through due to MCAS." I started laughing so hard but in a way, it really wasn't funny.

    I mean, aren't you supposed to be helping me with this? It was funny and I laughed due to it but I also thought, how nice it is to be her. Never have to worry about any of the shit I do.

    She means well but really doesn't get it.
     
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