Does anyone else worry about money/finances?

[bombsh3ll]

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 hope neither of you went back to those therapists! That's a saving right there.

 

[ghosalb]

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.

Did you look into GoFundMe.com......this website is the #1 website for raising money for personal medical costs. May be PR should start a GoFundMe.com campaign to raise funds for financial help to PWME/CFS.....those of us with CFS but financially ok then can donate to this fund and help our fellow sufferers

 

[Misfit Toy]

I hope neither of you went back to those therapists! That's a saving right there.

I think she means well. She is all about death with dignity. No one should suffer is her thought process.

 

[pamojja]

I think she means well. She is all about death with dignity. No one should suffer is her thought process.

I shudder at those responses of therapists, because before my ME onset was doing a course in a kind of psychotherapy, where the therapist never impose their own solutions (focusing therapy). And always try to stay in touch with what the client is going through, to guide one to one's own genuinely possible steps forward.

She said "well you may be dead in two or you may kill yourself before then." Yes she actually said that. Made me sick to my stomach.

I started laughing so hard but in a way, it really wasn't funny.

Now therapist of course could make mistakes, everyone does that. But right there that sickness in the stomach, or that forced laugh, would bring a good therapist right back to the process the client is going through. Doesn't let the therapist own issues get in it's way, and facilitate to let itself unfold in the client.

This way, by imposing complete off responses, and not even recognizing it afterwards, only the ego of therapist was served, client kept in dependency, and this business model is continuing.

It's a shame.

 

[confetti11]

Rarely do people talk about money. It's taboo to bring up worries about it. Many people don't want to admit that it's a real issue.

I was just diagnosed officially by a cardiologist with POTS. I also have MCAS. All of the medications I am taking costs a fortune. I am going to throw this out there knowing full well I may be looked down at. I am not sure if I could continue on if I was broke, homeless and sick. To me, that is a fate worse than death. To struggle with that added burden when you are already so sick is just too much for me to handle.

I recently went off of FB due to a woman who friended me showing what her life is like living in a van. She didn't qualify for SSD. She is so sick and she is homeless. We know those people. Many have this illness. No matter where she turns, she can't receive help. FB became so depressing to me with so much sorrow and sadness, I deactivated my account due to the anxiety it was causing. I would watch her videos of her in her van and cry for her and for anyone in this situation and have absolute panic about it. I admittedly couldn't handle it. I would scroll down and then a friend of mine would be in Hawaii after watching a homeless woman. I couldn't take it. Two opposing situations and it's not fair. To see someone have their life so hard followed by someone in Maui...I couldn't deal.

I have wanted to move to a different less expensive apartment, but I am finding them hard to find where I live. The issue with money is a real issue for me. I own only one thing; my car. Oh, and myself and clothes.

Work has pretty much ceased. I finally made a necklace after 2 months of not being able to function. I am eating only 9 safe foods right now due to MCAS. I am not so sure I am going to return to work this fall as I am far too sick and my doctor's do not think it's a good idea. Honestly, I don't see how I could.

I am officially in menopause and I feel like the light has turned off. I am so depressed. I have calmed down the vicious night sweats due to progesterone cream, thank God.

I am worried incessantly to a crippling degree about finances. I told a friend tonight that I would rather end my life then to go into poverty and be sick. I live outside of a major city. The housing or HUD or any of that doesn't usually have places that are nice around here.

I can't find others who are dealing with the same fears as most of my friends who are ill live in a country where they are taken care of due to socialized medicine, or most of my friends are married and have husbands, or live with a parent.

I am single and on my own.

All of this has me really anxious and obsessed. My therapist tells me to not worry, but honestly she doesn't know much about what you do when you are poor. She has no patients who are broke, or on Medicaid, etc. I really like my therapist, but here was her idea on what I should do if I don't have a car in the future, "Uber it." In which I asked her, "You know Uber isn't free, right?" She doesn't get it.

Does money trouble anyone else? Does it affect your illness? I am having a hard time getting a grip. I am thinking of relocating at some point to a different state that is less expensive. The problem with that is, the good docs are here. They are right here and when you move someone less expensive, you don't always have the luxury of good medical care.

It's also a fact even if you have some money, you eventually will run out of it. I am only 46, any money I have will not last me too long and there will be nothing for when I am old. Who knows if Medicaid will even be around in the future in case I needed it. Not with how things are going.

This. Is. Me. Exactly. Every single word of it I could've written myself. The illness itself may never kill me, but the finances might.

 

[Misfit Toy]

This. Is. Me. Exactly. Every single word of it I could've written myself. The illness itself may never kill me, but the finances might.

I am sorry. I know it all too well. ITs' awful.

 

[TigerLilea]

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.

I live in the Vancouver BC area which isn't that far from Seattle and with the heat that we have had these past three summers I don't know how anyone would survive living in their car.

 

[TigerLilea]

I never worried about money in the past because I was self-employed part-time and thought I would be able to do this until I reached 70 years old. I didn't (more like couldn't possibly) anticipate how much computers would make jobs obsolete. I am now in a position where in all likelihood my line of work is going to disappear within the next year due to computerization. It is estimated that in Canada alone, in the next 10 years between 1.5 and 7.5 million jobs are going to become obsolete.

On top of that the price of housing has sky-rocketed making the area I live in unaffordable to a large part of the population. Rents are at least three times what they were and rumour has it that within the next 10 years will double what they are today. I can't afford to pay $3,000 a month for a one bedroom apartment. I am nearing retirement age and only anticipate receiving about $1,200 a month in pension.

The money that I have been able to save over the years for the future, I thought would last me until about the age of 90. Now I don't think it will last much longer than about eight years.

 

[Dechi]

@TigerLilea Do you live in Vancouver ? If so, it's the most expensive city to live in Canada. Move in a smaller town, or even in another province. If you can, of course. You'd get a whole lot more out of 1 dollar somewhere else.

 

[TigerLilea]

@TigerLilea Do you live in Vancouver ? If so, it's the most expensive city to live in Canada. Move in a smaller town, or even in another province. If you can, of course. You'd get a whole lot more out of 1 dollar somewhere else.

I've actually thought of doing that, however, I'd be totally isolated. All my family are here on the west coast.

 

[Manganus]

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.

This is strikingly clear.
It's a shame!

On topic: I am lucky. I still have a mother alive, two siblings and sort of a half-broken distance marriage.
Until I got disability pension (God be praised!), I was dependent on their support.

This means that my worries aren't acute any longer.
Nowadays I worry about the day in the future when my disability pension ends and is supposed to be replaced by an ordinary Old age pension. Due to not having been able to work much, that pension won't be much to cheer about.

However, those years when I failed to work, and was more or less housebound (although I had no house to be bound to), they have left a cronical scar on my psyche:

I do worry about the future.
I worry about changed rules for the pension.
I worry about the next recession/financial decline.
I fear for the day I can no longer pay for somewhere to live.
I worry about not being able to pay for health care or dentistry.

And I worry in particular over the risk of losing my family members' trust in me, since they are my last safety net.

 

[Misfit Toy]

I live in the Vancouver BC area which isn't that far from Seattle and with the heat that we have had these past three summers I don't know how anyone would survive living in their car.

We had a mild summer here, but for me, there is no way I could live in my car with the heat here on most occasions. Unless you run the car all night for AC and want to die of carbon monoxide poisoning. I don't really get the whole thing, but I know people do it, I also know myself and I wouldn't be able to. I am too sick. Having said that, I don't want to be chastised because I wouldn't be able to live in my car. It's too hot, I pee about 20 times a night, it wouldn't even be feasible in any capacity for me.

 

[MargUK]

I'm reading these posts and thinking "Did I write a post yesterday and forget?" because there was such so much I could relate to and could have written myself!

I am also in the UK, currently getting ESA but finding it more and more stressful and downright impossible to keep fighting the DWP. I'm hoping to persuade my doctor to write a letter supporting me getting a home visit for a home assessment which will be coming up soon but I don't hold out much hope of getting one.

In one sense I'm 'lucky' because I'm almost 59 and therefore have only 7 years to figure out a way to survive before I can get the pension. I'm currently living on savings and have withdrawn all of a work pension which I've used to survive the last 2 years since I've been unable to work.

My mum died in 2015 and when we sold her flat, the money was divided up between myself, my sister and my 2 brothers which means I have £28,000 in an account for those 7 years. It might just be doable because I'm hardly spending any money being housebound and bedbound for much of the day but if I could get some help fighting for PIP that might make a big difference - I just don't know if it's worth the stress and not-there energy to do it.

People with normal lives just don't understand the massive stress and despair this situation puts us under when your income suddenly disappears almost overnight and you are the sole means of income. The future becomes very bleak indeed.

 

[TigerLilea]

In one sense I'm 'lucky' because I'm almost 59 and therefore have only 7 years to figure out a way to survive before I can get the pension. I'm currently living on savings and have withdrawn all of a work pension which I've used to survive the last 2 years since I've been unable to work.

I only have another seven years left until I can start collecting my pension, however, our Federal gov't is talking about raising the age up to 67 from the current 65. The last gov't did do that, and then the current gov't when it came into power changed it back to 65. However, I was reading recently that it might get changed back to 67 again. It's only two years, however, when you don't have much money those two years are a long time to go without an incoming income.

 

[L'engle]

I've actually thought of doing that, however, I'd be totally isolated. All my family are here on the west coast.

You can still get a better deal on Vancouver Island, as long as you are outside Victoria. The quality of life over here is better than in Vancouver and you won't be too far from your family. Also people tend to be fairly friendly compared to the mainland. The smaller islands also have quite nice communities if you are into that ambience.

 

[TigerLilea]

You can still get a better deal on Vancouver Island, as long as you are outside Victoria. The quality of life over here is better than in Vancouver and you won't be too far from your family. Also people tend to be fairly friendly compared to the mainland. The smaller islands also have quite nice communities if you are into that ambience.

I would love to live on Vancouver Island or one of the smaller islands. It is definitely something I am thinking about for the future. My brother and his wife would like to move there also, but I don't know if they would because all of their kids live here on the mainland.

 

[valentinelynx]

I am lucky to have a husband who is in good health and employed, but we are still reliant on my earnings working two days a week as a GP, which at the moment is very precarious and I am not sure how long I can continue. I have ME & POTS, and have been close to passing out many times at work.

In re-reading your post, @bombsh3ll, I note that you are a physician also. I know the situation in the UK is even worse than the US as far as "believing" in ME, but what about being a sick doctor? In the US, doctors are not "allowed" to be sick. It is seen not only as a sign of weakness, but as making you unfit to practice. Credentialing and state licensing applications typically include a clause in which you must state that you do not have any illness, mental or physical that UNtreated would affect your ability to practice! This is totally absurd, as almost any illness, untreated, affects ones ability to function!

Therefore, for a physician in the US, sharing that one has an illness, especially one as "controversial" as either ME/CFS or Lyme disease (late stage or chronic) is a very risky proposition. When I was a resident, I got kudos for coming to work with bilateral infectious conjuncitivis (pink-eye), one of the most infectious viral illnesses there is, while I was working on a pediatric (anesthesiology) rotation. One attending physician said to me, "Some of your colleagues would have used that as an excuse to not come to work..." Well, I was actually hoping the idiots would send me home to avoid infecting people's babies who were having surgery! Instead, I met the families and took the babies in my arms while wearing a mask and gloves. No one questioned this; I guess they thought it was normal.

Sorry, a bit off topic, maybe. Although it is along the lines of fearing for my career and income.

 

[tudiemoore]

I feel like I walk on a tightrope and by walking very, very carefully I am doing okay!
Mostly I refuse to let myself look too far ahead.

I have had CFS for 22 years with periods of better and worse as we all do.
Due to this I have never been able to develop a career, really build up any savings, work toward a pension.

My adult children grudgingly have assisted when I have had larger medical expenses and I know I am extremely fortunate in that respect.

I am "retired" now and have my Social Security income (very small!) and a small stipend from a relative.
I keep using the word "small" I am noticing!

I would like to share my experiences, changes I had to make in my attitudes and thinking, information I gathered--
at this time, but maybe not tomorrow, I feel okay.

As crazy as this may sound, the best thing I have done for myself is to lose my reluctant feelings to just point-blank say "I can't afford it. I can't afford to pay all of that utility bill. I can't pay my hospital bill. No, not going on a vacation this year. I can't afford it."

And not to mention tickets for those Broadway shows that come to town, new clothes, gifts, weekend trips--all those things that were in my life without a thought.

When I got to a really bottom-of-the-well point I started gathering information on welfare services--what, me?
Each state is different but I have learned a lot--hospitals usually will agree to a monthly payment of $10 on a bill, states usually have a stipend toward utilities, the bank might waive an overdraft fee in some cases, etc.
Knowing these kind of things has given me a little peace of mind.

I never thought it would be this way but who even knew there was an illness that could strip away plans, wonderful ideas for the future, and even the ability to get myself off the couch, groomed well enough to leave the house, and inch through the grocery store to buy peanut butter and dry cereal so I could eat!

Enough said for now!
Persist!
Love tm

 

[Seven7]

At the beginning I worried. Then I was so busy surviving I didn't think much. Then I realized if I ended up homeless and didn't have to move that much, it would be a blessing.
Once I was free and was ok w the thoguht of being homeless, never worried about it again.
I still work full time.

 

[tudiemoore]

Getting there is quite the process, isn't it?
It was for me....
tm