I'm tired

jasper_b

New member
Joined
Jun 1, 2022
Messages
3
I'm 24. I think I've had fibro at least developing since i was 14 - lots of time lost to pain brought on by stress. The symptoms only got worse until I was diagnosed at 19. even though it's a diagnosis of exclusion, and my family's reaction ranged from doubt to mockery, i looked for everything I could find about it online and felt so relieved how much sense it all made, how much it all fit. I feel this way especially when I see theories and preliminary findings that fibro may primarily be a problem with pain processing, and those signals being multiplied - that's what I experience every single day. It matches my understanding of what happens in my body.
But despite all of this, at least nine out of ten medical professionals I see for anything either know nothing about it or don't seem to believe it. Every time I move somewhere new and tell them my history they want to put me through every possible test over again. They tell me I'm young and healthy even though I've spent the majority of my life locked in a malfunctioning body. They drag their feet on doing anything to help me - paperwork for food stamps work exemption, and especially disability. Disability is a dirty word to them. The way they talk you'd think I'm asking for euthenasia. I've tried working so much. my symptoms were very light at 14 and that was the only time I've been able to hold a job - and that job made me cry every day from pain. Made me not be able to sleep. It even messed my back up so bad I had to go to a chiropractor at 16 for a year. I spent my days absent in my mind, unaware of my surroundings, shambling around in an aching body and just wishing for it to be over.
I've tried a few other jobs over the years and each time had to quit after two to three days. There was one single job that I held down for a few months, and that's because it was a student job with no requirements, that I didn't interview or even apply for, that was just making a couple wordpress webpages a week, and spending the rest of the time on my laptop, eating, or napping in the back room. And I think because that's in my history and I'm upfront about it, everyone thinks I can work. Even though that situation is in no way duplicable.
I've applied for disability twice now. This last time I put a lot of effort in, got as many resources and forms and evidence as possible, and was still turned down. One of the forms - something I was explicitly told to get - was a functional physical capacity test, which isn't relevant to my difficulties, probably didn't help, and that my doctor has now used to mark that I can work with restrictions on my food stamps reapplication. So they'll probably be sending me to work next month, and if i can't do it they'll take me off.
And I'm so tired of all this fighting to be recognized and given the means I need to live a decent life, andmy therapist advised me to take a break and try a different approach, so I've been doing physical therapy, I've been looking into a disability job placement program (if anywhere can duplicate the wordpress job I guess it'd be them)... I was excited about the physical therapy opportunity, but medicaid only gave me a few weeks of it and all it seemed to do is make it a little easier to push the boulder up the hill. At the end of the day, the boulder's still there, and it's coming back down. And there's nothing I can do about that.
And now I'm tired of all of this, too. Especially since no matter what I'm trying, every step of it takes months of waiting, and trying to figure out how to exist in the meanwhile. Taking care of myself is already a demanding job, and that includes finding ways to spend time that don't drive me insane, and working on all these other things is even more on top of that, and it feels like there's no goddamn end, and there's nothing I can do but wait and hope maybe next time someone will understand.
Anyway if these job things don't work out, I'm doing disability again, and this time with a lawyer. Though I'm not looking forward to that. Everyone I've ever tried to get to help me, with maybe one or two exceptions, has just ended up making me feel worse and/or the situation worse. and by god I just want to be a person. I have things I want to do and work towards and experience but I'm trapped in a body that's incompatible with the system in my country and I feel so empty. I have my whole life ahead of me and I look forward with dread because of it. Because it'll just be more of this.
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
Oh my :0( how awful to feel so disbelieved! Well, here is at least ONE place where you will feel believed. We all get it. Everyone here. I hope and believe you will see the validation you have been looking for so long is right here.

As for disability: it is after the 2nd appeal that 90% of applicants get approved. That last appeal puts you in front of a judge and the judge will decide. I had to fight for unemployment and finally ended up at a hearing and won. It sucks having to fight. A lawyer is a tremendous asset in the process. Are you within the appeal deadline for the last rejection? Definitely do it if so!

Fibromyalgia is terribly hard but it’s significantly easier surrounded by people who truly understand. I don’t know of anyone that got diagnosed in a short period of time. For me it was 18 years. Lots here at least a decade and more. I am avoiding traditional jobs because of fibromyalgia and actually just started building websites. Finishing my 6th one. Only done them for friends and family but I finally feel worthy of getting paid. You said you built Wordpress pages. Which template/builder did you use? And do you understand code?

My heart goes out to you ❤️ Sunkacola has a post for new members that really encouraged me. Maybe there’s something in it that will bless you.

Welcome :)
 
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jasper_b

New member
Joined
Jun 1, 2022
Messages
3
Thank you for your kind words, I really appreciate them. Honestly I was too scared about appearing before a judge to do the second appeal... that window is gone now, but it's good to know for next time.
I think I just used the default wordpress content editor, working with templates that were already there. I know rudimentary html, enough to make my own basic website, but never anything for anyone else. It's awesome you're doing that!
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Here is the post that sweetkami refers to:

 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
Court is entirely stressfully and I had to professionally participate in it for 8 years about once a week so I totally get that 😵‍💫. Thankfully, attorneys do all or around 90% of the talking and plead your case so you don’t have to ❤️

The web templates nowadays are much easier than in the past. I use Divi Builder. It’s taken many hours to learn but it’s been really worth it. Perhaps it is something worth thinking about sometime in the future?

I can’t think of a job outside my home that wouldn’t completely exhaust me. 3 hours of stimulation and my brain feels on the verge of a nervous breakdown 😬

I admire your tenacity. It's a huge asset in this slog
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,944
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I don’t know of anyone that got diagnosed in a short period of time.
except me... 4 months after the full flare (that I'm still in) started... bringing my ability to work from 120% to 0%.
Disability would've been a problem though, if I didn't also have seizures, so that also only took 6 months to get.
Luckily I realized earlier in my life that my body might fail me sometime, because it was always a lot of work to keep it in check, so I aimed for and got a position with quite some "security".
Earlier on in life like you Jasper and like I still do, I('d) definitely - patiently - fight for my rights. Not tearing myself up additionally, working at it like a card game - learning the rules and keeping at it. It's not fair, but that's the way it goes.
 

Creola17

Senior member
Joined
Sep 11, 2018
Messages
204
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
I'm so sorry jasper_b. I myself went through the whole doctor not believing what I was telling them 7 years ago so I found alternative doctors. I don't know where you live but there quite a few here. I'm in the Reno area. They really helped me to understand what is happening and how to deal with it. I still have some horrible flare but not as often and I can garden and cook. At 70 that's not bad.
(((gentle hugs)))
 
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