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.

Do you ever think about your financial future?

Discussion in 'Finances, Work, and Disability' started by Aerose91, Jul 24, 2018.

  1. Aerose91

    Aerose91 Senior Member

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    This is something that weighs on me a LOT. By far the largest burden on my mind behind my health directly. I look at my friends and how financially secure they are and especially how well they are saving for the future and it adds so much anxiety to this problem. Being unable to work for so long has made me feel like i could never catch up.

    Does anyone else share this?
     
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  2. crypt0cu1t

    crypt0cu1t IG: @skagginwagon

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    Yup, all the time.
     
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  3. Aerose91

    Aerose91 Senior Member

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    How long have you been sick? Btw, i replied to your DM
     
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  4. crypt0cu1t

    crypt0cu1t IG: @skagginwagon

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    I saw that, I actually emailed you so we can talk easier!

    I first got sick in 2011, then went into remission for 6.5 years and now Im sick again since February or this year.
     
  5. alex3619

    alex3619 Senior Member

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    I was informally offered two major jobs when I was completing my honours degree in IT. Two friends got two of those jobs. One lives in a very large house on a hill with a great view and is doing very well, and has been an IT consultant around the world. The other I lost contact with but he got bonuses bigger than most people get wages, on top of great wages. Me, its like, what financial future? Even with a cure I will never even remotely catch up. In fact I have two unpaid university debts still sitting there.
     
    Last edited: Jul 24, 2018
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  6. warriorgirl

    warriorgirl

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    I’ve been working as a tax lawyer since 2012 and I just loved it. My biggest wish is to be able to return to it :(
     
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  7. Aerose91

    Aerose91 Senior Member

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    Im sorry, @warriorgirl :meh:

    I was a personal trainer and producing a really high level fitness video. I had even just tried out and been accepted for the show Ninja Warrior. I had clients who would fly me out to see them around the country to train them. Everything was on a really positive trajectory then one day- blam. Disease hit me like a train and its been downhill from there. One of the hardest parts is that i don't have any coping mechanisms because everything i liked and spent my time doing was physical.

    Lately though ive been thinking heavily about what financial damage this is going to reap years down the road. Frankly, it scares the shit out of me
     
    Last edited: Jul 24, 2018
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  8. sb4

    sb4 Senior Member

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    If the 91 in your username coresponds to your birth year then you are about the same age as me. I figure that a little after 30 is when you really start running into trouble with job prospects, financial security and relationships. My current plan is to do everything possible to get at least 90% better before I'm 30. So this still gives us 2 years.
     
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  9. Moof

    Moof Senior Member

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    Me too, though after more than four decades of ME I do worry a lot less than I used to. Even if I recovered 100% tomorrow, I couldn't make much difference to my financial future at my age. I'll just get the state pension and my disability benefits; if the latter were secure I'd be fine, but under the Tory 'hostile environment' policies, disabled people in the UK can no longer be sure that they'll continue to receive help or that the rules won't be changed again in a way that strips them of their support.

    Money doesn't matter to me – I chose a career in the arts that was never going to pay much more than the average income – and on current levels of benefit I'm no worse off than if I'd been able to work till retirement and follow through with my modest pension plans. What's different is the knowledge that someone could end all my support tomorrow by taking a dislike to me and making a vexatious allegation of benefit fraud, which would stop all my income for a year or more and result in interviews under police caution whilst the benefits agency took their time working out that I haven't actually done anything wrong. That scares the hell out of me!
     
  10. Aerose91

    Aerose91 Senior Member

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    91 refers to my month and day- September 1. Born in 84. So, I'll be 34 very soon. I was on a very good financial trajectory before falling ill at 26 but because no one could diagnose me and i kept getting worse, despite losing my job and company, i was broke by 27.

    Im pulling for you to be back in the game by 30. You can make it happen
     
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  11. sb4

    sb4 Senior Member

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    I think I recognize your username from the jackkruse forums. Are you the guy that spent a lot of time in a tent in texas but the heat was too bad to get any benefits from the sun. Or am I thinking of someone else?
     
  12. Aerose91

    Aerose91 Senior Member

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    @Moof

    It's interesting to see how different countries handle social services differently. Here in the states we are about to run out of social security and medicare (our senior health insurance) in about a decade. It's tough knowing those safety nets wont be there.

    Does ME qualify you for a disability pension in the UK?
     
  13. Aerose91

    Aerose91 Senior Member

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    Yah, i belong there. I spent many months in a tent in Borrego Springs, CA. I did have to leave when summer rolled around being the desert and all. I've been living between my truck and a tent ever since so i can fully control my environment
     
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  14. sb4

    sb4 Senior Member

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    I see. It's a shame because I think that if I were able to sweat, I would be able to see how much the benefits of strong sunlight would affect my symptoms but alas even summer in the UK is too hot for me such that being in the sun is more harm than good. Do you notice the same?
     
  15. Aerose91

    Aerose91 Senior Member

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    Oh yes, heat will crush me. Humidity even more. It took me probably a year ween myself up in allowable sun exposure. The first time i tried it i laid in mid day sun for 30 minutes and crashed into oblivion for months.

    Slow increments got me there but the biggest factor to my sun tolerance is my electrolyte levels. It seems i dont retain water or maintain a sodium/potassium balance so i have lots of sensitivites that stem from dehydration. Drinking water does nothing for me. If i get the sodium/potassium balance correct and drink enough before and after, i can bare the sun
     
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  16. Runner5

    Runner5 Senior Member

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    PNW
    I have my husband drive me 90 minutes inland so I can be warm and have a day in the sunshine. It's usually cold where I live.

    Financially...if anything happens to my husband we're doomed and as it is he's working two jobs. He told me to go in for medical testing, it would be okay, we could financially manage it. I told him, okay, but you can't bring it up and throw it in my face and say we're plummeting to our financial doom because of my health because I can't manage that sort of stress, it's better if I just get hit by a bus. I warned him that it would be astronomical $$$ to get testing done, he was like - eh no worries.

    So now I hear about how I put us into absolutely crap debt because of my health. So far I guess about $36k in bills have rolled in. I tried to get a job during the 3 weeks I felt better - but now that I'm actually getting calls for interviews I don't have much energy and I'm worried about saying yes to anything and then not being able to even show up to train or making myself worse.

    I guess most days - honestly - I'm kinda thinking if I would get into a car wreck and die everything would be better for my family. My life insurance policy wouldn't cover my debts, but maybe it would make a tiny dent. At least I wouldn't make any more bills. And it's not suicidal depression - I'm just being straight up pragmatic - there is NO safety nets left in America, none that I know of.

    I was invited to a wedding for his family and he told me, "don't worry I told them you would just be hiding in the basement the entire time not doing anything." It's like he's married to frickin' GOLEM from LOTR. Holy crap man.

    I used to teach college, run a business, manage some computer labs and I'm an artist and love to write and now, now I'm gollum man. I'm straight up in the shire being a creep and weirdo. Lovely.

    Eh' not to be so negative, just been fighting with the hubby a lot about the money.
     
  17. Moof

    Moof Senior Member

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    Here, it's not the name of the illness, it's how it affects you. I have multiple chronic conditions – ME, EDS, Asperger's, psoriatic arthritis – and the combined effects are quite disabling. I've been a powerchair user since about 2001, so I meet the main test for mobility; I'm also unable to cook a simple meal from fresh ingredients safely, reliably, and as often as needed, so I meet the main daily living test too.

    This means I qualify for enhanced disability benefits, and I'm not pressured to look for work. However, we're entirely at the mercy of the people who conduct the assessments, and a lot of sick and disabled folk have had assessors who've lied outright on their reports. Those claimants have to go all the way to a social security tribunal to get their benefits, which can take a year or more and is incredibly stressful and exhausting. I was just lucky to get an honest assessor, but there's no guarantee I'll be as lucky next time round!

    That sense of stress and insecurity is a calculated policy, put in place by a government which thinks it'll act as an incentive to work. Unfortunately, a high proportion of those who fall victim to it are genuinely too ill to hold down jobs. The stress they're put through means that they get mental illnesses on top of their physical illnesses, putting them even further away from work and meaning they have to make additional demands on the healthcare budget. And the architects of this system? Needless to say, they'll be given enormous pensions and very likely public honours for their genius!
     
  18. Aerose91

    Aerose91 Senior Member

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    This really stood out to me and i bet is a story that plays out more often than we hear about.

    I had a parallel scenerio just not with money. When i first fell ill i had 2 friends take me in because they wanted to take care of me. A generosity i never could have imagined. However, as time went on and i didn't get better but rather got sicker, their demeanors changed. By 1.5 years i had to move out and back across the country with my parents because they hated even the site of me. 6 years later, we've never spoken again
     
  19. Runner5

    Runner5 Senior Member

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    @Aerose91 -- are you able to do any athletic training?

    I was a huge fan of Ninja Warrior :p I don't have cable TV anymore so not sure if it's still on or not. I always wanted to be fit and strong, but instead, I got the genes of a pudgy heavy reader. I've been trying to do a squat which is hilarious - trying with a chair - still doing it wrong.

    I've gained enough ground with the CFS to do a couch to 5K run program lately. I have a very bad impression I'm "inspiring" people when I'm out on the trail. Haha *sighhhhh* NOT in the good way either....!!

    It's nice to get outside though. Found out my Vegan / crunchy deodorant doesn't do anything for body odor but does repel mosquitoes.

    I would like to lift weights a little and get stronger, I have to slide (SLIDE! haha) my laundry basket as I can't actually lift it. But if I have enough oomph to do laundry and put it up it's a good day.

    Would like to hear more about your life, sounds quite interesting. Wondering if you found anything to replace the fitness? I have a background as an artist, looks like it would be easy to paint and work on things with CFS but my brain is too addled, can't focus or work too much. Sometimes I can copy paintings, that's a little easier.

    All the best :)
     
  20. Aerose91

    Aerose91 Senior Member

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    Oh God no, i can't train. I have long term damage from driving a few hours or living in humidity. Stairs can cause me serious disease progression. The most important thing for me is to stay bedridden 22 hours/day.

    Thats FANTASTIC that you're prepping for a 5K. You'll be pudgy no more! After the encephalitis i unfortunately lost a lot of my knowledge but if you need any help with a training regimen I'll do what i can
     
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