How You Get By: The ME/CFS Financial Coping Stories

[MEKoan]

Hey All,
Thanks to everyone for the tips and the nakedness. It's much appreciated.

I live on government disability of $1050 per mo.

My rent is $700 per mo which is bottom of the barrel for a bachelor/studio apt. in my city. I might do better in the suburbs but I think I'd lose the will to live. As it is, I have one of the cheapest apt.s in the city in a fantastic location just one block away from an off leash dog beach. I can't get down there every day, or every week, but when we (little dog and I) can, it's such extravagant luxury that I am overwhelmed with gratitude.

I had the gas stove removed as I was paying $30 per mo. for the pilot light. I use a hotplate now. My monthly bills for utilites and the like - electricity, phone, cable, internet - combined, are $150 to $175.

I have forgotten something because I know I don't actually have $200 per mo after paying my bills. I must have miscalculated but I can't think (literally can't think) where.

I usually have about $150 per mo. for everything save housing and connectivity. I eat rice, lentils, frozen veg, popcorn, day old bread and eggs. OH, and coffee. There is a grocery store right across the street from me which I use because that's as far as I can get but it's very expensive so I stick to a just a few foods. I rarely buy anything you can't eat.

Laundry costs $2 per load - and that doesn't take into account the price of soap - so it doesn't get done very often. I am almost always in my knickers inside in the summer so as not to dirty my "school clothes". This serves a dual purpose as I don't dare put my window ac in and pay those electricity bills! I am an inert, nearly naked person instead.

I never go to the movies or anywhere else which would be more painful to deal with if not for the fact that I'm vertically challenged anyway.

A fragrance sensitive neighbour sometimes comes running down the hall to divest herself of something wonderfully stinky she has been gifted by her clueless family. I get some really wonderful soaps and lotions. It's a good thing I'm not sensitive because the window right next to my head is just above the vent from the laundry room so my apt. is often Bounce scented.

I was thrilled when people started wearing flipflops in the city in the summer because my sandals were nearly dead and there was no way to replace them.

I panicked last winter when my little dog needed extensive dentistry but there is a wonderful fund (The Farley Fund) that will pay, one time, up to $1000 per vet. clinic, per year and last year a local vet. used the entire amt. to take care of my little dog. Thank you Dog! I mean, God!

I'm Canadian so I do not pay for health care or insurance for same. Since I'm on ODSP I am also covered for dentist, glasses and pay only $2 per prescription. HUGE help! However, I have not had the verticality nor the bus fare to take much advantage of the dental or glasses - I squint and chew on one side.

Now that I find I can spend more time on the computer, I am contemplating how I could make some money with it. (I started a thread with some questions I have for those of you who write - believe it or not, all evidence to the contrary, one of the things I used to do was write.) If I figure out a way to make some money, 50% of what I make will be deducted from my cheque. If I reach a certain threshold, I'm on my own again - which would be fantastic if I could manage it. I mean to say: It will be fantastic when I can manage it!

peas (frozen)

ETA I get $1020, not 1050!

 

[Tammie]

I can totally relate

I can so relate to what has been posted thus far. I live alone. I'm on disability, getting $949 a month, rent is $725 and that is the absolute cheapest rent around. (I have spent the last couple of yrs looking at any and all possibilities and telling everyone I know that I am looking, and nothing has come up for less. I've also looked into roommates with no luck and there is no housing assist here - the waiting lists were so long, they stopped accepting anyone new on the lists.) I actually really want to move becasue of suspected mold and other issues here that are not helping my health at all, but that is not looking likely bc of the costs.

I'm on Medicare, but I also have the supplemental insurance, bc Medicare by itself doesn't cover the things that I use it for....not that the supplemental stuff is that great either, and my current doctor does not accept Medicare, as is the case many places. I also have Medicaid, but cannot find anyone who takes it, so it is almost entirely useless (except for hospital visits). Anyway, my cost per month for the insurance is $178. Then I also have car insurance and renters insurance. I paid those for the yr all at once, so I don't' rememebr the exact amt, but they are roughly $50 per month put together.

Everything in my apt is run by electric, and the apt has very poor insulation, so even when I keep heat and air turned way down, the elec bill is still around $60 - 130 per month depending on the weather.

I have a pre-pay cell which I only use for emergencies, and it is $15 per month. My land line phone and computer are bundled into a package deal that my dad is currently paying. He also is paying for my groceries, gas for my car, supplements, and one doctor. He is not going to be able to do this much longer, though, and I have no idea what I am going to do then. I spend quite a bit on supplements, and my groceries are not cheap either. Unfortunately, I do buy quite a bit of convenience types of food items, bc I generally do not have the energy to do otherwise. More frequent shopping (for fresh foods), cooking prep and clean-up take way more energy than I have most of the time. Also, there are many foods that I cannot tolerate eating bc they make me sick. And, I have MCS, too, so many of the non-food items I buy are more expensive, bc there is just no way I can tolerate so many of the scented, synthetic, cheaper versions.

My other expenses would seem to be discretionary, but they are really vital for maintaining any kind of functioning at all. I have a health club membership, bc swimming is one thing that I can still usually do and it helps tremendously when I go and don't overdo it. I go tanning and pay a monthly fee. This helps keep my circadian rhythm from getting insane (w/o tanning I sleep from 5 or 6 AM to 5PM; with it I still wind up sleeping to around noon, but I get to sleep earlier and noon is so much better than 5PM for waking up). Tanning has also helped optimize my Vit D levels, which were really low before, it helps with my pain levels a lot, helps with my mood, helps my energy a little, and helps keep my skin clear. So, the $20 a month I spend on it is well worth it.

Also, I have a cat and a bunny; had them before I got sick and am not about to give them up. They, and my faith, are often the only reasons I have for sticking around, and they really do not cost much at all to feed and for litter and hay. I see a counselor, and this yr the co-pay for that has been $10 a visit. That has changed from yr to yr and my counselor has been really good about working with me, and again, seeing her has made a huge difference in my well being. Besides these expenses, I sponsor a child through Compassion, and I am not about to give up on him. Actually, I would keep sponsoring him and taking care of my pets if it took all the money I had. They are that important to me. I give money to my church, too when I am able to attend, though that amt is very small.

I don't have cable, so I can't watch TV (no reception), except for some things online. However, I cannot sit at the computer for that long without getting physically ill so I don't do that all that often either. I don't go out, pretty much ever. I can't afford to and I almost never feel well enough anyway. I don't buy clothes or other things unless I absolutely need them. I don't go to Starbucks or other coffee shops. I don't eat out and very rarely order take out. I don't go on vacations. I can't afford them and don't feel well enough. (I was actually fortunate enough to be able to take a completely free trip to visit family in Fl last winter. That was the first trip I have had in 6 yrs, and though it was worth it, it took me 6 weeks to recover, and I barely did anything while I was there.) I get my books, music, and movies from the library. I have had one hair cut in the last 2 1/2 yrs, and that was at the cheapest place around.

Basically, my expenses cost far more than my disability payments, and aside from the few things that fall into the discretionary-but-really-very-necessary-to-my-continued-physical-and-mental-health-functioning spending (that I listed above), there are no places where I can cut costs any further. I also have a ton of student loan debt and I owe my parents (though I don't think they are really expecting it back). I may still have some medical bills left, too. I'm not exactly sure where I stand on that, due to a lawsuit related to the car accident that triggered all the health issues. (It has been settled, and for way less than my medical bills, but they have been/are being negotiated down by my lawyer.)

At this point, I am very fortunate in that my dad has been helping a lot and I also have had some assistance from a few people at my church; however, as I have said, I cannot count on that help continuing for much longer. Once it is gone, I really have no idea how I am going to manage, but I do know that God has brought me this far. I am trusting that He will continue to get me through.

 

[caledonia]

Jenbooks,
You ought to move to Ohio - the Amish chicken is some of the cheapest meat around. I actually have a choice of 2, Miller's and Gerber's, available at regular grocery stores. A whole chicken is 1.49/lb.

Everyone else,
You might enjoy reading Your Money or Your Life by Joe Dominguez and Vicki Robin which is a book about how to reduce your expenses and live simply. It sounds like a lot of you have discovered ways to do this, but there is a method in the book that will help you find expenses you may not have thought of. On the other hand, like the other poster said, it helps you decide what expenses make life worth living and that you can decide you will incur anyway. Your first lesson is the get the book from the library for free.

I also enjoy the discussion forum on the associated website: http://www.simpleliving.net/discussionforums/

As far as TV reception, when everything switched to digital, my powered rabbit ears were no longer very effective. I made my own digital TV antennae from a board and hangar wire for free, and amazingly it works great! If you don't happen to have all the parts laying around the house, it might cost you a few bucks.

You can get instructions on youTube. http://www.youtube.com/watch?v=EWQhlmJTMzw

ps. Living on SS, about $1150 a month, rent $370, home improvement loan $330 (needed that for energy efficiency otherwise utilities would be double!), utilities $150. $4500 in CC debt (not happy about that), minimum payment of $110. I owe my sister a lot more for helping me with naturopathic treatment. I'm making about $50 a month on average doing website maintenance on 3 websites. This has to stretch for 2 as BF is once again out of work. I'm trying to start a little niche craft business, but I don't have much energy to put into it. I've sold maybe 7 items in a year, lol. I'm in the middle of disposing of my parents' house and possessions which has been going on all year and soaking up much of my time and energy.

I should be able to start reducing debt in about a year when the home improvement loan is paid off. Right now, every month is a cliffhanger as to whether we will have enough money for food, but somehow it always seems to work out.

 

[jenbooks]

Tammie: I was thinking of getting a lamp used for psoriasis this winter, as btw Nov-March there is no Vitamin D to be had from the sun in NY. I do take cod liver oil but I don't tolerate supplements well--I think they're made from lanolin or something. I was going to price the lamps and overall I wonder if such a purchase would be useful to you? I think they have more UVB than tanning salons. I think the UVB is what makes the Vit D. Not sure about all this.

Also I got a $30 quart type infrared space heater--on Amazon.com--and it outgassed in about a week (I'm very MCS), and it only uses 400 or 800 watts. When you place it near you it warms you up amazingly without drying out the room and is probably a lot cheaper than regular heat.

Thank God both of you have family assistance. What would you do without it?

I made a determination to stay in a budget but it's impossible and my savings are being depleted monthly. My tooth problems cost $1100 in 3 weeks. I have mold issues so I had to buy replacement filters for both Austin air filters, esp since in NYC they get very icky quickly, and once a year replacement is mandatory. I found that red currants help my bladder inflammation and the season is over but there is a farm upstate that makes black and red currants and freezes them, so I purchased 75 pounds of their red currants as that's all they have until next summer, and they'll ship them to me as I need them. I bought a $100 essential oil diffuser that tests show will eliminate mold to put in my worst room. I'm being good on food--not throwing stuff out, trying to eat fish heads and chicken livers and cheaper but wholesome foods, but on my last Amish order I included $25 of chicken breasts and I got $35. That's one annoying thing about one particular farmer is he somehow pads the order and then makes excuses. But as we all know if I don't buy those currants and somebody else does and bladder inflammation returns and I can't sleep I won't be functioning at all. If my Austin filters are clogged with mold spores after a year and I don't buy new ones they won't help me and asthma will be really bad. Etc etc.

I'm getting work, happily, but the problem is nobody is paying me on time. I finished 2 pieces in early July that I wonder if I will get paid by October sometime or will it be November? My editor is so overworked herself I hate to bug her esp. since she's giving me more work and I really need the $$. At my publishers, a children's book I finished May 1--well during the economic crisis publishing had a bloodbath and my editor was fired. They didn't hire another one for 8 months. My book sat there until August when the new editor met me with me and had some comments I thought were stupid, but promised an edit letter by Labor Day. It's mid September and now she's promising it by the end of the month. If I'm lucky enough to get it in the next few weeks I'm sure from her stupid comments at our meeting I will not like most of her suggestions and then have to make the ones I think reasonable while explaining politely and convincingly why the others are wrong. Well I don't get a much needed final check on this book until it's "accepted' and then I expect that to go through the system really slowly and get to me months later. So it's really scary and frustrating.

 

[Tammie]

jenbooks

Are the lamps you mentioned the same as the light boxes that are also used for depression, or are you talking about something else? I know that the light boxes typically have the UV blocked, but I am not familiar with any other type of special lamp. I would like to know more.

As to the space heaters, that is something that I may wind up doing this yr. I've been a little concerned about using one around my cat, but I think as long as I watch out for him while I am using it, that may be a good idea.

Also, what kind of Austin purifiers do you have? And how do you know when it's time to change the filters? (That may be a dumb question, but I have had my purifier for a little over a yr and have not taken it apart yet, so I don't know how obvious that is.) I am curious, bc I have an Austin Healthmate purifier and it is supposed to get 5 yrs before needing a new filter. I don't really know if it's going to last that long, though, bc I am reasonably sure that I have mold issues here, too. I do know that my brother washes his filters, even though they are not specified as washable ones, and he seems to get more use out of them that way. He has a different kind of purifier than I do, though. So, I don't know if that would be something that would help you to extend the life of your filters, or not.

 

[jenbooks]

Hi Tammie. No, these are UVA/UVB light boxes to treat psoriasis at home. They will allow your body to make Vitamin D. I guess there would be a risk of skin cancer with overuse so if I get one I will be careful about its use. However Vitamin D levels when low are associated with so many health problems.

The heater I got has a grill so I doubt your cat would get harmed by it. Its some kind of infrared that is really pleasant. I would put it on at night and close my eyes as I lay there and feel like it was a warm pleasant fire.

I have the Healthmate. I'm very concerned about mold issues when I have to close my windows in the winter as the spores proliferate. I was told that any hepa filter will get clogged in about six months to a year with the mold spores. So I'm just going to replace my Austin every fall (the filters) because there are about six months a year I can't use my window fans to keep circulation going and spore count down.

 

[Tammie]

jenbooks

Thanks for your response. I will have to look into the lights you are talking about and into getting a heater.

As to the skin cancer, it is a risk, but not as much of one as a lot of people seem to believe, and Vit D actually has a protective effect, if the levels are optimal. I've read a lot of studies about this, and they actually point to higher levels of skin cancer in people who do not get as much sun and then suddenly get burned, compared to people who regularly get some exposure. And, I have seen studies that show that cancer rates have actually increased since sunscreen was invented. Obviously there could be other reasons for this, but these studies do not seem to point to regular sun exposure as being the problem that many believe it to be. Since I have been tanning, I have just been very careful to check my skin regularly, and so far there hasn't been any cause for concern.

Also, thanks for the info re mold. I think I am going to have to replace my filters now, too.

 

[jenbooks]

Hi Tammie. I did some research on this last year. UVA/UVB lights are used for reptiles that need sunning to live. They will migrate toward the light. I think I bought a big bulb that is used for reptiles but I never used it as it made me nervous to be adapting it without any guidelines.

Here is a good site:

http://www.phototherapyexperts.com/phototherapy-works.htm

I am not sure of the prices of boxes, but people do sell used boxes. I'll look around. If you're paying weekly it may be cheaper in the end to buy a used box.

 

[Victoria]

Hi Vic...Victoria in Victoria , I spent some time in Melbourne btw. I really liked it, better than Sydney. Also in the Dandenong hills. I really can't tolerate canned foods and would prefer not to. However sardines, for instance, have all the health benefits of salmon and are cheap. However the bones can be annoying. Recently a local foodie gourmet store had imported Spanish mackerel (fresh) that was delicious and only $4.99 pound. I got it 3 days in a row.

Farmed fish is pretty bad as a regular thing. It has no Omega 3's. It is fed a completely inappropriate diet of corn and soy (at least here) and for instance the farmed salmon would be grey if they didn't put orange dye in its food. And I hear that farmed fish are even fed ground up cow bones. Agribusiness is something to stay away from if you can. Organic chicken is probably healthier than farmed fish. But I'm glad to hear that you can tolerate the canned fish (I'm assuming it's wild?? I hope so).

Now that I know you use toilet paper instead of Kleenex I feel guilty when I buy Softique Kleenex...lol.

Hi Jenbooks,
just having a browse while I eat my lunch..................
By the way my name is Vicki (not Victoria), I was christened Vicki & my younger brother calls me Victoria sometimes.
I started using Victoria on Dr Weil's & ProHealth websites & it remained to this day.

Yes, I was concerned about canned salmon - I buy John West. It's the most expensive and the only one I like. I can only hope that it's not too loaded with contaminants or mercury.

I eat a lot of fresh salmon also. At the moment, it's cheaper than alot of meats.

I buy organic, free range chicken, but not much since I had food poisoning in January this year. Am eating turkey breast instead.

I am super-senistive to additives/preservatives/chemicals/colourings etc so I can only hope that I would "know" if it was really doing damage. I am a very instinctive sort of person. If my gut instinct says "No" - I don't (whatever).

But my MCS has improved dramatically. At once stage I was heading down the road of Cort's MCS - dizzy, faint, slurred words - the whole lot.

I stil have quite a few allergies or reactions to things, but manage to avoid them for the most part, as I really only go out (apart from work & fresh food market) when I really, really have to.

Can now go into chemists & perfume/cosmetic sections of large department stores without holding my breath & making a quick dash for my purchases (& then rushing back out).

That is one of the reasons why I am so well most days (I never do anything that I think might upset me/tire me).

Have a problem in the last week or so because the back lane which I use walking home from work has jasmine trailing over a long expanse of fence. I feel sick & dizzy every time I walk down the lane. Will have to start holding my breath as the jasmine flowers open up further.

Glad you liked Melbourne. I am lucky to live in a really beautiful area too. The Dandenongs are incredibly beautiful in Autumn. What time of the year did you visit?

Victoria (well you can call me Vicki, but that might mess up the post flow).

 

[Tammie]

jenbooks

Thanks for the site link. I am paying monthly for the tanning, but yeah, you are rt that buying a box could wind up being cheaper in the long run.

 

[bee33]

My financial story

I live in a two-family house that my parents paid for. I pay them a mortgage but they just give it right back, plus about $300 a month, so my only housing expenses are property tax ($2000 a year) and homeowner's insurance ($1300 a year).

I have a tenant in the downstairs apartment who pays $995 a month. I pay for her heat and hot water, and for general maintenance (there's always something), so what I can keep comes out to less than that. I live in the upstairs apartment with my bf, who pays $400 a month in rent (that's to cover his share of the bills, plus some extra), and a roommate who doesn't have money because she is dealing with her own health issues, so I don't ask her to pay any rent. Our roommate gets a few hundred dollars a semester from financial aid for books and supplies, so she pays for some food, but mostly my bf and I buy food for the household.

My bf didn't have a job for quite a while (over a year), so I was paying for all three of us for that time. (He now makes about $19,000 a year.)

Other than food and bills, we don't have many expenses. We don't have a car. My bf rides a bike to work.

I'm not struggling financially. I have what I need. I could always ask my parents or my sister for (more) help if I needed to, which makes a huge difference.

I was turned down for disability, so I receive no $$ from the govt.

I sometimes sell some artwork and crafts, but the money from that is minuscule, maybe $300 a year. I haven't had even a part time job since 1995.

 

[Jody]

Hi bee33,

Welcome to the forums.

Thanks for sharing your story.

It's good to hear of someone who has enough to make ends meet. Doesn't sound like there's any extra, but the basics are there.

Your parents sound wonderful.

 

[bee33]

Thank you Jody.

I don't know that there's anything in my story that might be helpful to someone else, because, yes, I can only thank my parents.

The only thing I can say is that if anyone is fortunate enough to be in a position where they can buy a house or someone is willing to help them buy one, two-family homes usually cost about the same as single-family homes. They sometimes cost less than single-family homes, because they are less desirable and are sometimes in shabbier condition.

It's not always easy to manage. When I was interviewing prospective tenants it was very hard, because there was so much to do and people to talk to, and I was so tired. But I've been very lucky in that I've had the same tenant for the last six years.

 

[MEG]

Finances/Depression

I have seen so many with CFS who have only disability to live on, and if they are lucky, public housing. When I first got sick, I was a single mom and could not work anymore. I am an RN, so we were getting by and had a little extra when I worked. Then I got short term disability from my employer. But my medical bills were catastrophic, not only from Western medicine but I tried most every alternative modality I could find. I needed to get better to be able to work to raise my kids! I didn't get better. I ended up having to sell my home. The home where I had lived for 20 years raising my family..it was my "safe" place...in every way. Leaving it was awful.

I am now married to a loving and committed husband who works way more than he should to support us. I am one of the lucky ones.

Oh how I understand what this disease does to so many financially and then emotionally. Where to live, how to care for children, how to eat...and our illness has been mostly belittled. People struggle for years to get disablity...it is a shame.

Bee33, thank you for bringing up this subject as some may wish to use this thread for ideas and support.

 

[Jody]

Thank you Jody.

I don't know that there's anything in my story that might be helpful to someone else, because, yes, I can only thank my parents.

The only thing I can say is that if anyone is fortunate enough to be in a position where they can buy a house or someone is willing to help them buy one, two-family homes usually cost about the same as single-family homes. They sometimes cost less than single-family homes, because they are less desirable and are sometimes in shabbier condition.

It's not always easy to manage. When I was interviewing prospective tenants it was very hard, because there was so much to do and people to talk to, and I was so tired. But I've been very lucky in that I've had the same tenant for the last six years.

bee33,

It helps us all when we share our stories. Some bit of it may be just the catalyst someone else needed, some new idea, or a last piece to a puzzle they've been brooding over ...

It may help someone who comes here to read, who knows someone with cfs and would like to help but don't know what they can do ... and something somebody posted about their own experience gives them an idea.

Plus, it's nice to know that you are safely in a home.