building a life with fibro

[jasper_b]

I've been having trouble feeling like there's any hope for me as someone poor with fibromyalgia from a young age. especially with the american economic climate. i've given up on ever owning a house, leaving the country, going to college, having any sort of career, etc. I'm only 25 but most of that has been spent fighting and suffering and having door after door close on me. I'm doing the best I've ever done and that means I'm still poor (working 8 hours a week), depressed, denied disability, college dropout, unable to support myself financially or physically, with little personal freedom, living in a tiny third floor apartment, thousands of miles from where I grew up through no choice of my own.

I also have social anxiety, and i've been trying to combat it, and get to know new people, and talk with them and coexist with them. but it starts hurting real fast when their life is so different from mine just because of what they've been able to do without a second thought. when they just bring up and take for granted things like houses, vacations, college. when I have to try to figure out some way to relate or otherwise explain I'll never be able to do anything like that without feeling pathetic.

I just wanted to hear how anyone else is doing. If anyone else has managed to build a life despite fibro. If anyone else is dealing with it in poverty. ways you relate to people with more opportunities. etc.

 

[sunkacola]

Hi jasper,

My heart goes out to you. For some of us, life is never easy. When I was your age I did not have fibromyalgia, and instead I suffered from severe chronic depression, insomnia, PTSD, and a few other things. It was every bit as debilitating and painful as I have found fibro to be, just on a different level. I couldn't hold a job more than a few months, was impoverished and isolated. And of course, very little was available then (or even is today) that would help.
Around the time I started getting the depression under control to some extent I developed fibromyalgia....so now the pain is more on a physical level than mental, although I still and no doubt always will have depression.

So while I am not in your shoes, I feel I can relate to what you are experiencing at least to some degree.

I learned some thing, and I don't know if any of this can possibly help you but I want to help so I am going to mention them, just in case anything does. Please don't think I think I know it all or have it all together or know what you are going through, I don't. But I want to help.

I have built a life and I live a life despite chronic severe clinical depression, a life in which I experienced some very hard knocks, and fibromyalgia. It's NOT EASY! And no one who has had an easy life will ever understand how hard it is. What I remember, whenever I hear people going on about trivial little things when I know they have an easy life, is that they have never had to find out how strong they are on the inside. I have, and I am made of steel, and that is something to be proud of even if I haven't had some illustrious career.

We don't all have to do great things. Some of us just do our best day to day and we do small things with great love instead.
This counts.

I learned that in order to get anything done, to get anything I needed in the way of help it was imperative not to take no for an answer, ever. By which I mean, never give up. If there is something you really need......financial assistance of some kind, a therapist you can afford, medical attention, whatever.....don't ever think that you cannot get it. Just think you haven't found the way to get it yet.

When one person or agency turns me down I thank them for their time and ask them please to suggest another place I could call for help. then I repeat that over and over. sometimes I will call the same agency back again a week later, get a different person, and they give me a good suggestion the first one didn't.

I always operate on "just the facts ma'am". Always be brief - have it written down if needed, in order to cover the pertinent points and do so without hesitation, repeats, or lengthy explanations. Never get emotional. Document everything you can. Give real dates and lengths of time whenever you can. In other words " I have been incapacitated by pain 22 days out of the past month", rather than "I hurt all the time and usually can't get things done". This means keeping a very simple little diary, just hash marks or symbols on a calendar, whatever will tell you what you need to know. Document who you called, the date, and name of the person when looking for help. This helps you remember who you tried, and also you can give that list to someone to show them how hard you've been trying to get help. If you can find one person who listens to you, realizes that you deserve to have some assistance and wants to help, they may make all the difference for you.

Most people do not get disability the first time they apply. Sometimes it takes two or three times, even more. Don't take no for an answer, just keep applying yet again if you feel that is what you need/want/deserve.

All of this takes energy that you don't have. Believe me, I know.
To the best of your ability, do it anyway. Just don't give u p. Do what you can in one day. If that is one phone call, then give yourself credit for doing that because that is hard and you deserve respect for that.

Look for a support group in your area, for people with chronic illness. There, you would find others who know what it is like. You will also potentially find people who have found ways of getting services you have not found yet. Networking is great. We are here on this forum to support you all we can, but we don't live where you live and if you can find people in your area they can be helpful in ways we cannot.

As for the economic climate, things are getting better. But this will always go up and down, as that is inherent in the nature of an economy. You can't let what that is doing defeat you. Tell yourself it makes no difference, that you can get what you need anyway. You can.

As for leaving the country or owning a home, you have at this early point in your life no idea what may come about in the future. There is no reason to believe that these things will never happen if you want them to happen. I have left the country. I own my own home. I didn't get to take trips or buy a home early in my life, and I had to work very hard for a long time to get to the place where I could do that and buy my place. And I bought my first (probably only) home when I was decades older than most people are when they do that. So what. I did it, and I like it. And I appreciate what I have probably far more than those who have it easy and can get whatever they want when they want it.
And this is my life. I don't compare myself to others, just take what joy I can and run with that.

What else I have done: Tried to eat a healthy diet all my life. didn't always succeed with this and when profoundly depressed I mostly drank and ate instant dinners....really bad. But whenever I could manage it I ate healthy food. I stayed active. I found one or (rarely) two people who liked me, and made a close friend I could talk to 2 to 4 times a month. I have always done my best to get out into nature as often as possible. I also have always had a pet, and find that taking care of and loving someone who is dependent on me and loves me back makes all the difference. I found free or cheap clinics to go to, sliding-scale therapists (most of whom were no good for me but I never stopped trying anyway), and lived a simple life. I make sure I grab every opportunity I have to laugh, and laugh hard at tiny little things, because there's plenty of time when there's nothing to laugh about. I go out and look at the stars, sunrise, sunset, all free every day and can take me out of myself.

If you don't get to finish college, then you don't. Not everyone gets to, but if you want it badly enough you actually could go by taking community college classes one at a time. Many of them are held online these days. Financial assistance is often available. If you liked the courses you took and did well in them, then you could arrange to talk to one of the professors and explain your situation, and see if they would offer advice that was useful.

All this is hard. Being isolated and socially anxious makes it even harder, and I have been there. The thing is, though, no one will do it for you. That's a solid fact. So you have to do what you can for yourself. Don't think you have to do it all at once. Do one thing a day and build on that. That's what I did. And some days I did nothing, and then I just told myself I was doing what I was able to do that day and maybe tomorrow I would do more, and it's OK because being disabled doesn't mean you are busted or wrong or worthless.

I don't know if any of this helps.
I really hope there's just one thing here that might.

 

[sunkacola]

I also have social anxiety, and i've been trying to combat it, and get to know new people, and talk with them and coexist with them. but it starts hurting real fast when their life is so different from mine just because of what they've been able to do without a second thought. when they just bring up and take for granted things like houses, vacations, college. when I have to try to figure out some way to relate or otherwise explain I'll never be able to do anything like that without feeling pathetic.

I just wanted to hear how anyone else is doing. If anyone else has managed to build a life despite fibro. If anyone else is dealing with it in poverty. ways you relate to people with more opportunities. etc.

To respond to this part more:

1) When people bring up things I can't do I just ignore it. ("There is this lovely little restaurant, and lunch there will only run you about $50!!" Yeah, right. )

2) Don't think you will never be able to do things. You don't know what the future holds, and while I don't ever advise people to live on hope, it only makes logical sense to recognize that you have no idea what your life is going to be 5 or 10 years from now. No one does, even those who are convinced they do.

3) I don't try to have a social group or a bunch of friends. One or 2 close friends is plenty, at least for me. And their financial, health, living, whatever situations may be very different from mine, sure. But the ones who are your real friends, it doesn't matter, and they will never cause you to feel less than because you don't have the same life they do.

 

[jasper_b]

@sunkacola , a lot of it helps. immensely. i asked these questions on my therapist's suggestion. (i'm glad medicaid exists.) on my best days, i agree with a lot of what you said, how you view all this. (it's harder most other days. but i can still try and hold it in mind.) and it's good to see at least one example of... you know. things working out. living a life you can be grateful for, despite everything. thank you.

in regards to this:

Document everything you can. Give real dates and lengths of time whenever you can. In other words " I have been incapacitated by pain 22 days out of the past month", rather than "I hurt all the time and usually can't get things done". This means keeping a very simple little diary, just hash marks or symbols on a calendar, whatever will tell you what you need to know.

for around a month, but somewhat spotty and inconsistently, i took daily records of my pain and fatigue levels. date, time, event or location, average pain level, diffuse pain levels, localized pain levels, fatigue levels, misc symptoms. like i said, it's spotty, so there are days with no logs and days with three. i do still think it generally shows my average highs and lows in a period of time... i sorted it into a spreadsheet, and i'm thinking of sending it into my SSI medical appeal. you know, whatever might help. now i'm thinking about how i can get more objective data, though. it's hard because my state fluctuates a lot, and i have such a hard time keeping track of things (finding some measure to just tally would be great for this). but at least i got something relatively done

 

[JayCS]

Brilliant advice by @sunkacola, I second all of it, and can relate to all of it, lots of similarities - almost everything, but to a lesser degree or shorter time, other added physical health issues.

Your ponderings, Jasper, about logging symptoms is praps what I can delve into best.
I do a lot of detailed logging of symptoms, triggers and treatments and more on my blog.
Sorry if I'm going into too much detail, but at least starting general.

For me, the amount I can engage in physical activity due to the amount of energy/exhaustibility ('fatigue') is the most clear cut thing, easy to communicate, easy to keep keep track of, a single measure that can be tallied. The pains and Ache itself is something I could push thru if it didn't cause further problems, but it comes with that flu-like 'fatigue'. Similarly insomnia, fog and GI may contribute, but not necessarily.

To generalize more, I spose it's deciding what symptom, or rather what effect on my activity is strongest.
So compared to "10h" of physical activity a day, work or play, I used to be able to, I worked myself up to 3h-3.5h/d = 30-35% (now spread, not 16h non-stop multi-tasking). With every jab my energy went down to <10% and with a lot of hard work I got it back up., each time 5% less, so now max. is 20%. Every larger trigger can bring that down to 10% for a week. That's half an hour twice a day or 3x20'. Continually at this low level it's become usually easy to distinguish 12% from 18%.

Or when I prefer, 12% energy is 88% exhaustibility. (Exhaustibility used to describe it best, when I was able to recharge my battery to 100%, now better exhaustion or maybe 'fatigue'.)

Maybe without comparing to an earlier state all of us could just assume 10h of physical activity a day might be normal and how much (of that) do I now manage? But your mileage may vary there. And in my case talking and walking are extremely strenuous physical activities, whilst typing/communicating online I count as rest - there definitely your mileage might vary. Actual rest I "can't"/don't - after an extremely strenuous event I need 20' of just lying doing absolutely nothing, but then it's back to light "laptop activity", if I need rest from that I do some self-care like stretches, looking at plants and birds. Also longer total rest is poison to my body, cos after 20' I stiffen up and Ache from it. Enough having to do it at night, in the daytime I need to change my postures regularly otherwise I get "post postural Ache" as I like to contrast with my "post exertional malaise", so I have to keep those in balance.

Not what you're asking, but praps interesting for the next steps:

To improve it and work with it, I relate these to my triggers and since the 3rd jab detail my energy "profile", to identify the amount (% and h) of rest, very slow, slow, medium & quick energy I have. I have a blog entry template that I adjust and add to, and update regularly.

I regularly adapt the way I track and what I track to what is relevant to work on at the moment. I now order the symptoms by importance - 1) a) energy/sleep and b) Ache, 2) Histamine/MCAS/jab effects, 3) doc interaction, 4) "Under control, attention necessary" e.g. local pains.

 

[sunkacola]

@sunkacola , a lot of it helps. immensely. i asked these questions on my therapist's suggestion. (i'm glad medicaid exists.) on my best days, i agree with a lot of what you said, how you view all this. (it's harder most other days. but i can still try and hold it in mind.) and it's good to see at least one example of... you know. things working out. living a life you can be grateful for, despite everything. thank you.

in regards to this:

for around a month, but somewhat spotty and inconsistently, i took daily records of my pain and fatigue levels. date, time, event or location, average pain level, diffuse pain levels, localized pain levels, fatigue levels, misc symptoms. like i said, it's spotty, so there are days with no logs and days with three. i do still think it generally shows my average highs and lows in a period of time... i sorted it into a spreadsheet, and i'm thinking of sending it into my SSI medical appeal. you know, whatever might help. now i'm thinking about how i can get more objective data, though. it's hard because my state fluctuates a lot, and i have such a hard time keeping track of things (finding some measure to just tally would be great for this). but at least i got something relatively done

My recommendation is to simplify. don't try to keep track of everything, and make only one entry per day. Take what you consider to be the average for that day, and write that in your calendar every day and call it good. Maybe a 1 to 10 scale for the pain, and/or fatigue, or even just whether or not you could get things done that day. For one thing, the more simple you make it the more likely you are to do it every day, and for another, SSI doesn't want to hear all your details, believe me. The people who read these things have to process many per day and if you have a lot of details they will only skim them anyway. What they need to hear is how many days the pain or other symptoms incapacitated you, made it impossible for you to work. Make sure you tell them how long this has been happening.

 

[jasper_b]

Jay, sunkacola, very helpful, thank you... it feels like such a minor and uninteresting thing to have to do, but ah well.
Jay -

Also longer total rest is poison to my body, cos after 20' I stiffen up and Ache from it. Enough having to do it at night, in the daytime I need to change my postures regularly otherwise I get "post postural Ache" as I like to contrast with my "post exertional malaise", so I have to keep those in balance.

i'm so glad (and sorry) to hear someone else gets that! i get about as pained after sitting in one place for an hour as I do after working for an hour. I can't even have a cat on my lap for more than five minutes

 

[sunkacola]

Jay, sunkacola, very helpful, thank you... it feels like such a minor and uninteresting thing to have to do, but ah well.
Jay -

i'm so glad (and sorry) to hear someone else gets that! i get about as pained after sitting in one place for an hour as I do after working for an hour. I can't even have a cat on my lap for more than five minutes

In a way, that's a blessing, if you want to reframe it in your mind. It means that you have to get up and walk around, stretch, do something, and not just stay in one place all day, which is bad for people. I find that if my body reminds me, I am much more likely to get up and move around regularly during the day even if it is a pain and/or fatigue day that prevents my being as active as I want to be.

Not being able to have the cat on your lap, though, there's no way to see that as a blessing.

 

[JayCS]

I can't even have a cat on my lap for more than five minutes

Well, for us that isn't "even", that's actually one of the hardest things, at least for me. Actually any kind of comfy snuggling with anything or anyone is quickly "spoilt" by having to adjust position, fidget etc.
Trying to be normal and relax and not move makes it torture.
The counterpart would have to be "comfortable with that", either by being able to adapt or by needing similar posture changes. It'd need to be(-come) a natural flow, without complications or strain.
Even during relaxation exercises and to/in sleep I'm regularly on the move. That's what makes normal meditation sitting hell for me. I think I was told, or thought it up myself, that this endurance of enormous pain would be a good exercise in itself. Took a while as a youth to realize it was sort of masochistic/sadistic.

Not being able to have the cat on your lap, though, there's no way to see that as a blessing.

Well, sort of it is in the same way, because that also is something I used to try to endure, altho the pain is a blessing in telling me not to.
And other workarounds are the many other ways cats want to be with us or we with them. We can watch, talk, interact, stroke while moving in all and any posture, they're a blessing that they can be so close, but so independent and adapt-able. Cats I love cat sitting every now and then don't want that long contact anyway, usually, and "understand" when I don't.
And there's blessed alternatives: My wife's got her guinea pigs on her I think more than an hour each per day. She can sit still, but they do like changing their position themselves, and it's easier to change theirs and ours cos they're lighter. They usually try to charge up her to tuck themselves under her chin, and she then puts them down again more, and that's the "game" they play.

 

[jasper_b]

In a way, that's a blessing, if you want to reframe it in your mind. It means that you have to get up and walk around, stretch, do something, and not just stay in one place all day, which is bad for people.

that's true... it's one of the rare fibro pains that's actually asking me to do something achievable and helpful, haha.

I think I was told, or thought it up myself, that this endurance of enormous pain would be a good exercise in itself.

i'm always having to fight this thought process in me. it's just one of those things that floats around in societal consciousness until it sticks into your own. even just suddenly realizing im thinking to myself that i haven't "earned" an ibuprofen today, or that i should spend more time without it before taking it. there is no reward from pain. ive been trying to do meditation too, but only about three minutes or so at a time.

And other workarounds are the many other ways cats want to be with us or we with them. We can watch, talk, interact, stroke while moving in all and any posture, they're a blessing that they can be so close, but so independent and adapt-able. Cats I love cat sitting every now and then don't want that long contact anyway, usually, and "understand" when I don't.

it's true... cats are creatures with a wide range of preferences and ways to bond with you, so they tend to understand or adapt. i still get pretty sad when I have to move my sleeping cat off my lap, though. I wish i could cuddle them as much as i could when i was a kid - which even then was pretty short.
those guinea pigs sound so sweet. sometime in the future i might think about a smaller pet.