How can I get out of this hole?

simplelife

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How can I get better support for myself? My situation feels dire and sometimes hopeless. Right now I just spend my good days catching up on all I couldn't do on my bad days. I was diagnosed over 6 months ago and the doctors basically just gave me material to read and a "good luck." I'm going through a divorce and will need to become financially independent by the end of 2022 when the money runs out. My health insurance terminates next week and then I'll be stuck with Medi-Cal until I get a job with health benefits. This means I essentially do not have health care except for emergencies (Medi-Cal is a joke, I've been on it before). I do not have disposable income for alternative health care either. I was SAHM for over a decade and these days I can barely maintain daily living tasks and taking care of my son every other week, much less apply for jobs...the thought of working full-time seems almost impossible. My doctor said even temporary disability is extremely unlikely; I'm better off putting my energy into my healing and finding suitable work. Has anyone been in a situation like this? How do I help myself? I do not have family, finances, or friends who can do much more than provide a little empathy. I need to work and pay rent, but fibro flares seem to stop me at every step forward. I appreciate any feedback.
 

sweetkamie20

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I wish I could give you a hug. It's hard to figure out where to start, isn't it?

I don't have the absolute dynamite answer for you but a thought occurred to me while reading this about a temporary/maybe longterm fix. Do you have a high school diploma and college degree?

Im not sure where you live but here in the US there are special scholarships and grants for atypical students seeking BA/BS degrees. Also, just getting into college opens up doors to loans which will give you some means to live while you build a future career (one that works for your health) that is desirable.

One beautiful thing about college is that you usually are only in class a few hours a day (and nowadays many classes don't require you to attend at all). Aside from those times in the class you could manage studying on your terms...College was the easiest "job" I ever had because you can orchestrate it around your life as opposed to your life around it.

Just a starting thought. Wish I could answer other question regarding insurance, etc. but I think you live in another country. In the US you can get health insurance without employment, especially if you have a child. Also, here in the US disability has different definitions in different institutions. Even if you don't count as disabled according to the health system, you could count as disabled in the educational setting and get preferential treatment based on that.
 

Forgetmenot

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Omg goodness ,I was where you sre,but I'm in the UK which means things are very different health care wise.
But all I can say is it will get better,but it's going to get worse first.going though a break up will take alot of energy from you.the emotional toll is very hard on the body .Now look I'm not going into details but I had to find a job.it was hard but it give me company,it give me something to get up for.and it give me ppl to talk to on the dark days.
Only you can fight this battle.and you will get thought this.pls don't cut yourself off.we are always here for a chat sending hugs
 

JayCS

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Hi simplelife - and welcome here! Sorry to hear your predicament.
Medi-Cal suggests to me (looking it up...) California... ?
Actually, not having a good insurance would have brought me to where I am now about half a year faster, maybe it'd even spared me 9 months! So I don't think the recommendations of your doc are bad at all: Fibro is best tackled by concentrating on ourselves, on self-care, like in sunkacola's Basic Advice Post here.
Exchange your doc's word 'healing' with 'improving health' though: fibro doesn't heal, but praps your doc didn't say it exactly like that.
To get out of the seeming hole it's important to focus on sensing one of the ways out (as the darkness and feeling alone blurs our sight).
That's the first step - while you get to know where the sweet spots of your activities are you can make a clearer choice what kind of work may be possible for you: For me it's working from home, preferably typing, and only speaking (and working more) when I choose to. Everything over 30 mins, sometimes 10 minutes, is usually a problem: sitting, walking, standing, lying down, talking and holding arms up are the main "actions"/postures that can cause local pains and contribute to my overall severe Ache - I have only a set of 2-3 main positions that are OK for longer periods ("twist-stretched sitting").

Any chance of charities/churches with good counselling to make sure you've got your basic situation sorted as best possible and also your focus?
 
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sunkacola

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I am so sorry you are in this untenable situation.
I have not been where you are exactly but I have been in some dire straits in my life. What I did and would do again is this: Start calling people and agencies. Ask for help. If they say they cannot help, ask them where you should call next, and call them. If they say no, ask them for suggestions on where to call next. And so on and so on.

this is exhausting and frustrating. You can probably only do one to three calls at a time because each call you have to sound calm and quiet and reasonable and just give them facts in a brief format. If you get emotional or show frustration they won't want to help you. Remember each one is hearing from you for the very first time. I found the best thing was to write a SHORT paragraph, maybe 5 sentences, that encapsulates what I need to tell them, and read it to them. that keeps you from going off script or talking too much. If they suggest a place you already called - and they will - simply tell them calmly that you tried that and they told you to call them. The moment you start to feel emotional, put down the phone and do more later when you are calm. You have to keep this up. It's a marathon enterprise, so you have to take it as you can manage to do it well.

The main thing is you never give up, not ever. And sooner or later someone will have a suggestion for you that will actually lead you to something helpful. I know, because I have done this many times in many places and with different kinds of problems and as long as I kept at it I always found something helpful, even if not the perfect answer I hoped for.

Your first call might be to Goodwill Industries. They help people to find part time jobs that they can manage to do. They specialize in helping people with ANY kind of disability or bad situation. They can offer many things - job coaching, job placement, transit passes, housing recommendations, counselling, and so on. You can make an appointment and go talk to someone there whose job it is to help folks like you.
Don't despair. You can get through this and you will. Let yourself feel all the sadness and the fear and everything else, but don't display it to those you are asking for help.

And to help yourself in this time I also recommend that you read the post I wrote HERE giving advice on managing fibro. It a LOT of stuff, so don't feel overwhelmed, just pick one thing and start trying it out to see if it helps. Increasing your overall health to whatever degree you can manage with self-care will be more helpful to you than you know.
Best of luck to you and please let us know how you are doing so we can try to help more.
 

sweetkamie20

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Agreed-churches can be a fantastic place to find resources and people to support you even if you aren't a member and there's a good chance you might find help more tailored specifically to you.
 

simplelife

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Thank you all for your compassion and thoughtful words. I realize now I could have been more clear with my own words, but I’ve been feeling so overwhelmed lately!


Education and training are not my problem. My real problem is that I don’t have enough sustained energy/brain power to do much to help myself. I can rely on about 4 hours of productive time per day—to do daily chores, feed myself, take care of my son, do errands, make phone calls, go to appointments, apply for jobs, or go to my part-time job. Four hours a day isn’t nearly enough for me to survive! I live in one of the most expensive areas in the US. Moving isn’t an option right now; part-time or low-paying jobs aren’t long-term solutions for a single income either.

Can I expect to be more productive as I get better at managing my symptoms?
 

JayCS

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Can I expect to be more productive as I get better at managing my symptoms?
Yep, definitely. You can learn to adapt to your environment and your environment to your needs a bit more. You can learn to take breaks in time so they can be shorter, to task-switch, to simplify, to reduce exertion, to multi-task (e.g. do stretches while waiting for something), to prioritize, to plan better, to assess better, to increase quality time while decreasing quantity. And you can work at preventing triggers, alleviating symptoms. On the other hand you'd have to undertake the risk and self-discipline of investing some of your precious time in self-care, in developing all this, otherwise you will just continue pushing thru, increase your symptoms and get more and more unproductive. Without knowing why, If you're lucky your symptoms may get better for a while or if unlucky worse, flare.
But as we've been suggesting before - if you're at your limit, it's also worth investing in getting help: Like asking more specific questions on here or getting help in the community you live in. Not sure what you think about this yet?
 

sunkacola

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Can I expect to be more productive as I get better at managing my symptoms?
Everyone's "mileage" will vary, but I know that I and many other people have found that things change a great deal for the better when the whole body is addressed and managed correctly.

I wrote that post on how to manage fibromyalgia because I did it, and I wanted to let everyone else know that it was possible.

I spent a few years trying to ignore pain, then about three years taking tramadol, unable to get out of bed in the morning until it had taken effect, and not having a life outside of going to work which I had to do to survive. My work was very physically AND mentally challenging, and I had to be "on", and not show how I was feeling, no matter how bad it was.

Finally I saw someone who suggested to me that it was within my power to change things....not to cure but to improve. I decided to try, and embarked on a long period of experimentation and exploration and research during which time I did many things differently and tried many non- medication substances and many different activities and ways of doing them. And I went off most pain medication and then all pain medication except for the occasional use, maybe once a month.

Things started getting better around the six month mark but were not really improved significantly until over a year, and then were more or less at the point they are now after about a year and a half, because I had hit my stride in terms of knowing for sure what helps and how much I could do and, most important, how to listen and "converse" with my body. It is definitely a process you have to recognize will not have instant gratification, but I sincerely doubt that anyone would not receive some significant benefits if they put their mind to really doing what needs to be done.

I think people only fail to succeed because they expect instant or rapid gratification and they give up too soon. Another way to fail is if they won't try things fully....like cutting down on sugar or some other food rather than fully eliminating it from the diet, which is the only way to test it. Or, cutting it out completely but only for a week which doesn't give enough time for benefits to start to show. This is like taking piano lessons for three weeks and they quitting, saying you can't play piano because you aren't able to play a Mozart concerto.

I was truly desperate. I didn't think my life was worth much if things didn't improve, because I had always had a very active lifestyle. So I went at it with full intention of feeling better. I stuck with it and gave everything I tried a long test period, one thing at a time with regards to food, and slowly building with regards to exercise. I wanted to know, for myself, that I had REALLY tried everything I could do, so I didn't skimp or "cheat" and I didn't give up. Sometimes I got discouraged, especially with exercise, but I refused to give up. Ever.

The long term result for me is that a few years later my days are not back to the way they used to be but the difference doesn't ruin my life. I have to do things more slowly. It may take two or three days to get the house really clean but I say "so what?" A big project that took me a week before Fibro now will take three weeks, or might take more. Occasionally, but not often anymore, I have to cancel plans if when the day comes I can't do it. My pain is less frequent and less all-powerful, although I still have really bad days sometimes.

My whole attitude has changed as well. I am not mad about it, I don't resent it, I don't feel sorry for myself, it doesn't make me depressed or discouraged. KI am able to be upfront with people when needed. I feel the loss of how I was before, of course, but I accept that loss as being what it is, and I know that nothing stays the same forever and it doesn't hurt to hope, as long as that's not all you do. If I can't do something I accept it. If I wake up with deep pain, I say "Hello pain. You're back." and I do what might help, accept that this is one of those days, and live with it until it eases, which it always does rather than staying for weeks. I am fully accepting of what I have to deal with, and also accepting of my occasional feelings of sadness or loss, and I just live my life the way it is now, day by day.

While some activities have had to be given up for others that work better for my body, I can do some things now I absolutely couldn't have done before I learned how to manage the fibro, and things I never believed I would be able to do again. I am convinced that most other people will have the same results, or close to it, but only if they go at it in a very determined way and don't give up.
 

simplelife

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Thank you, yes, it's very helpful to have practical tips about how to manage this. I'm realizing I need to spend more of my precious time/energy on researching and learning my own needs and limitations. I know you're right that if I can do that, it's more likely I can get out from the overwhelm and find better functioning. Thank you
 

simplelife

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Thank you for your candid and thoughtful response. It sounds like acceptance is a big part of the process. Maybe that's where I'm stuck: in grief. I, too, was very physically active, a vibrant over-achiever, and all that. I've had to give up my career which wasn't just a job for me but a passion since childhood. Searching for a substitute comes with emotions and stress that only aggravate the fibro! Add the single mom survival bit to it and no wonder I'm overwhelmed!

I'm trying hard to see the gifts in all of this. I know there are some. One gift is that I got myself out of an abusive marriage that was only going to keep me from ever getting better (I'm pretty sure I was 'sick' for years before diagnosis). So I guess there is some hope after all. Thank you :)
 

sunkacola

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Thank you for your candid and thoughtful response. It sounds like acceptance is a big part of the process. Maybe that's where I'm stuck: in grief. I, too, was very physically active, a vibrant over-achiever, and all that. I've had to give up my career which wasn't just a job for me but a passion since childhood. Searching for a substitute comes with emotions and stress that only aggravate the fibro! Add the single mom survival bit to it and no wonder I'm overwhelmed!

I'm trying hard to see the gifts in all of this. I know there are some. One gift is that I got myself out of an abusive marriage that was only going to keep me from ever getting better (I'm pretty sure I was 'sick' for years before diagnosis). So I guess there is some hope after all. Thank you :)
Truly seeing the gifts can take some time. It does for most people, so if that part is hard no worries. It may not be worth your effort to Try Hard to see them. Just focus on what you can do for yourself to feel better. I personally haven't noticed any "gifts" from fibro. I don't think that's necessarily important. Learning what works for you to manage it the best you can is key. If that involves seeing gifts from it, great. But if not, that's fine too.
 

sweetkamie20

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My real problem is that I don’t have enough sustained energy/brain power to do much to help myself...I can rely on about 4 hours of productive time per day—to do daily chores, feed myself, take care of my son, do errands, make phone calls, go to appointments, apply for jobs, or go to my part-time job. Four hours a day isn’t nearly enough for me to survive!
I can relate to your fear, "Will I ever have more than 4 hours each day to be productive?" I think that was my first question here when I joined several weeks ago. My next ones were essentially where's the shortcut to getting better. I really, really wanted a quick fix, a way to get back to my old life quickly.

I am still learning what to expect, how to manage things. There is no cure, but there are better (and worse) ways to manage things and the sooner you can wrap your mind around the idea that this is a management scenario (not a cure scenario) the sooner you will find the best ways to manage it.

Realizing this is a lifelong journey has been a tremendous help to me. It's lifted the frustration of unmet expectations and kept me from getting depressed about failed attempts.

One other thing: with supplements I only change one thing at a time so that I know whether it is working. If I make 2 changes then it is impossible to kmow which is truly helpful/harmful.
 

JayCS

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One other thing: with supplements I only change one thing at a time so that I know whether it is working. If I make 2 changes then it is impossible to know which is truly helpful/harmful.
Yep, I agree, under normal circumstances, when you're building up a repertoire.
After getting my basic fundament and lots of training, I have however been in situations where I've needed to take the risk of quick help, piling them on, making sure I know all side effects or quickly looking them up. And then trying to stop one by one, like when I run out of something. That worked well. But it's "advanced mode"....
 
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