disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I'm feeling depressed and trapped right now.
My husband and I are having major financial issues. I had to quit my job last year because of this illness. We have been trying to survive off his teacher salary. It's been very difficult... especially with paying the bills and everything else.
I've been doing much better than I was last year... so I've been trying very hard to find at least part time because I keep telling myself that I'd be able to at least do part time.
I've tried to find work at home, but that's nearly impossible to find that would pay well or hourly.
So just when I start thinking I can do this, work part time, I get a day like today where I just felt completely awful. Felt like I was dying. Very bad neck stiffness and headache and feeling flu-like and out of body and lightheaded, etc.
Even if I can do part time, how would I make it through a day feeling like that? I just feel so trapped because either I stay home and recuperate and rest and we go more into debt and get to the point of not being able to pay off a bill, etc., or I take a part-time position and risk feeling like I did today at work or risk getting sicker all over again and having to quit once again. Very, very trapped.
I have no idea what to do. I just break down sometimes because my husband and I have way too much on our plate. And choosing what to do is even harder...
I know this isn't 'medical' but this is where most people are, and I need opinions and thoughts from people because I am just completely lost...
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ash, I can understand your anxiety around this. I have tried to work when I can during these last four years with Lyme. I am fortunate to have my own business and work from home.
However I work with people, and need to be able to do it consistently, which I cannot. I have had months at a time where I cannot work at all, and times when I can do a few hours here and there.
One thing I will say for sure is that the ANXIETY associated with trying to work when you are WAY too sick to work is an added stress and pressure you need to really consider.
The more I tried to work, the more I failed, the more anxiety I would feel about the whole thing, as well as depression. The stress level of even TRYING to work just made me so much sicker.
I had to face many times I knew I had failed people who were relying on me, and that I knew I hadn't done such a bang up job.
I cannot describe the amount of anxiety and stress I put on myself every day. But the bills had to be paid, and I tried to keep up, working when I was so sick I had to do it laying on the couch.
I finally stopped trying for several months and the feeling of the weight lifting off my shoulders was SO helpful and important. I totally needed to focus on getting well, and spent those months pretty much in bed just a step above comatose.
Then I tried to do a little bit again, and am seeing how it goes. I am just trying not to stress myself too much over it, though.
The other thing I found is if I try and work a few hours a week, that is ALL I can do. No laundry, no dishes, no cooking, no time with the family. It is a grueling cycle of work/recuperate/work/recuperate, or as I like to affectionately call it (NOT!) work/sick/work/sick.
This is true even if I only work a few hours. The stress of it, of getting prepared, being on my toes, etc, wears me down incredibly.
So I suggest you really take these two things into consideration:
1. Anxiety and stress: It isn't just the hours you work, it is the fear you won't make it to work, that you will get sick at work, or that you will have to work when too sick to work. This anxiety is with you 24/7. You worry about it all the time. It is like carrying your job around with you every minute of your life, because you can't stop thinking about how you are going to manage it and all the implications of that.
2. The drain on you: Even working part time may cripple you for the rest of your week. Really think about the impact on you and your family, your responsibilities, etc. It is very likely if you begin working, between #1 and #2 there will be nothing left of you.
I have lived this for four years, and at the end of the day, my bills still didn't get paid. We kept our house though, but that's due more to family help than to me making any noticeable income.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
disturbed,
my heart goes out to you! i worked since age 21 - age 49 when i LEFT/QUIT my state job of 30 yrs. 7 months WITHOUT ANY BENEFITS!!
thank god my husband RETIRED W/FULL BENEFITS INCLUDING HEALTH INSURANCE 1 yr. prior so as a spouse, i'm covered. but we know lyme expenses are ALL OUT OF POCKET! don't we!?
have you worked fulltime 5 years continuous service so you have 20 quarters in so you could file for social security disability insurance, SSDI, benefits?
how about ssi benefits too??
several suggestions and both i refer you to my newbie package links below....
FINANCIAL BURDENS, print off pages 73 - 91 !! **********************************************
if you decide to file for SSDI, disability work benefits, info you need to know is on pages 114 - 139 *************************************** ************
if you decide to file SSDI, i'd print off those pages to really become familiar with all this.
BOTTOM LINE; if you do NOT have a SUPPORTIVE PCP OR LLMD who will make out all the extra paperwork, forms showing YOUR PHYSICAL LIMITATIONS, then you have no luck of being approved!
best wishes and let us know what you decide. if you get approved for SSDI, and later you get much better, there is a WORK PROGRAM you can try to go back to and if you can't work, it will not jeopardise your work payments!!
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
D, here's what it says at the Social Security site about people who are at least 24 when they become disabled:
Work during half the time for the period beginning with the quarter after you turned 21 and ending with the quarter you became disabled.
Example: If you become disabled in the quarter you turned age 27, then you would need three years of work out of the six-year period ending with the quarter you became disabled.
If you decide to go for this, I can provide you with an excellent SSDI attorney. You only pay when you win, and there's a max you have to pay, or less, depending on back pay, etc.
Hope you feel better soon!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
My quick free advice, is to sit down with your husband and discuss your finances. Sit down with a spreadsheet and go through all your debts, income, ..basically a full budget. Then determine your budget based on part time, or no money for yourself. See if debt consolidation is possible. Look at cutting back extras (cell phones, internet acess (remember, the library is free), subscriptions, any and all areas you can cut back...except for meds and proper nutritional food. Be honest with each other, even including selling your house, possession to get out of debt, or to build up a nest egg.
Then on the work side, see if you can work part time. Even if its a few hrs a day, mentally, it will help you in the long run to know that you're pushing through and not letting lyme win.
But the key is to be honest with each other and really talk about your health, finances and the future.
Posts: 514 | From . | Registered: Apr 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
D,
I'm so sorry! We all have been there/done that with this disease.
Sad thing is..you will have anxiety whether trying to work or worrying about how to keep up with expenses if you don't work.
How are your secretarial, organizational, bookkeeping skills?
This suggestion is off the top of my head. I have not tried it nor have I known anyone else who tried it but I do believe there could be a market for it.
I am an insurance agent. For years, my husband and I owned an independent agency and we were the commercial insurance division. Our staff handled the personal lines division.
As a commercial agent, we had many small, medium and large contractors we insured.
Larger contractors could afford office staff, but smaller contractors could not. These smaller, independent contractors had a real serious problem with paperwork. They can't be in the field all day working and spend every evening dealing with paperwork demands.
Most of the time, they are great contractors but lousy organizers of paper demands. They don't make enough money to afford a fulltime secretary and an office to house the secretary.
See the need?
It would be work from home. Hours would be flexible and parttime.
Don't look for hourly pay, he has no way of verifying the hours you actually work.
Offer a set monthly rate and base that upon so many hours. That way, if his demands exceed the expected hours, you have room for negotiating a new monthly rate.
Start with just one contractor and see how you do. This allows you time to establish a system that is effecient and effective. Then, later, if you are able, add more contractors.
Contractors is just one example of small business that could use part-time help with paperwork demands.
The possible client base is endless.
Just a suggestion.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i can relate. i guess we each have to decide based on our own situation
i was a teacher. i had the benefits. my husband was a carpenter. i pretty much had to work or couldn't get treatment. kids needed treatment too, and all needed medical care.
he gradually took on more and more housework and childrearing. i basically worked 8 hrs-commuted 2 and slept the rest of the time.
we ended up divorcing. that way we each had the kids 1/2 the time. so , again i basically worked, slept and had a little time with them. i paid for house work and other help.
my goal was to work until one year after they graduated from college. it would get me debt free and a reasonable retirement. i didn't make it. i got hurt at work-severe head injury the last time-and had to go on disability and retire early.
because of that i live very far away from family (where it is cheaper). i feel isolated and have to travel for medical care-but own a small home.
the kids did graduate and are doing well-working on their doctorates in the science-and they both had (have?) lyme
my ex remarried and the new wife was wonderful-stepped in to do lots of things i couldn't with the kids and helped financially.
i'm not saying this is good...i never planned on getting divorced or being so disabled at this time in my life. but it is how it worked out for me. not my plan...but i am working with it...taking the positive no matter where it comes from
i had to pray a lot to figure what to do along the way. pray and listen for the answer.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wimenin suggestion is a good one.
Crown Ministries has a program you can use to plug in your numbers and help you as a guideline.
I think it is the monthy budget site.
They also have a good form to fill in with categories such as Housing...which includes utilities, etc.
Transportation
Medical, etc.
Only a small percentage of people actually take the time to record what they spend for 3 months and then fill out this budget sheet.
So, I am assuming you have not down this. Kudo's to you if you have.
As far as work, I have been trying to figure something out since I came down sick.
I have yet to be well enough.
I figure once I am able to do my own laundry, dishes, meals, and other household chores then I can start adding in some kind of work.
The lady who manages the apartments where I live is frequently out with illness. Either her own or her children.
But, because of the job she has it works out well for her and gives her the flexibility.
She will work on weekends and evenings to make up for the times she was not able to be at her normal business hours.
I recently signed up with Shaklee. The main reason was I wanted to get the toxic cleaners out of the house. I am slowly doing that.
But, you can get a web site for $15 a month as a distributor. So, I signed up for that.
Time will tell if the web site pays for itself.
I don't see it as an income at this point as the lady who I met from Shaklee has been doing this a long time and basically just paid for her own cleaning needs at first.
She is finally getting an income at this piont but it took many years.
I know some on this web site became xango distributors and it has turned out pretty good for them...I assume.
Helped their health too while at it.
I wish I had started with something on line and stayed with it when I first came down sick.
But, was too sick.
It is not only physical with this but the brain in general is an obstacle.
I know people in wheel chairs or scooters or power chairs that have a brain that is working "normally" so they are able to bring in an income.
Speaking of the brain, I have no clue what I just wrote or I feel like I am off track with what your question was so I will stop now.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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jamescase20
Unregistered
posted
Gosh, I have not worked for about 9-10 months now already myself...so I can def relate.
And with my very agressive tx I def cant work today, thats a given.
And not working surely leads to more fatigue.
I HAVE to force myself to work somewhere, somehow, soon.
I rem when I was working with lyme and co-infections, it was not all that bad....now its so much worse.
It appears at least in my case...that activity, ANY, pushes the invaders back somehow.
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
jamescase20
I found the same thing to be true. Returning to work just seemed part of my recovery.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
BTW, for what it is worth,
I originally treated with an MD who was also a board certified homeopath. His homeopathic remedies (which are FDA approved) completely cleared my brain fog, migraines, hearing loss and they never came back.
If these are the symptoms you are experiencing and that are keeping you from working, I highly recommend homeopathy. But not the kind you buy at the healthfood store and not to be done with anyone less than a certified homeopath.
Who knows? It might work for you too.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Luvs,
I tried sending you a PM, but your box is full.
I'm interested in the homeopathic remedies you're talking about.
I never heard of the FDA getting involved with homeopathic remedies. Where did you find that out?
Best,
A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Cass,
I'm responding privately but wanted to respond here too for benefit of others.
My doctor informed me the remedies were FDA approved plus it is labeled on the bottles.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Hi, I totally understand your dilemma. I'm so fortunate that I've been receiving SSDI for about 7 years, otherwise, my husband and I could never have survived financially.
I've searched relentlessly for a work-at-home business to supplement our income, as well as part-time employment. But the fact remains, I just never know day-to-day, or hour-to-hour how my body is going to feel. So I can never be a dependable employee, something that gives me horrible anxiety.
We just have to be patient and loving with ourselves until we've healed physically and emotionally enough to re-enter the workplace, no matter how long it takes. What would you tell your best friend? We have to nurture ourselves as we would a loved one. We can't heal a body in a state of constant stress.
I had to file an appeal for my SSDI - do whatever it takes if you're qualified. Good luck and God bless.
Patti
Posts: 27 | From Utah | Registered: Jan 2008
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