This Fibro has my mind tied up in knots as tight as its pain keeps me !1

General
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Lately I feel as though I have spent so many years aiding myself in a never ending quest to find pain relief for myself. Now I'm not always about myself and hopefully sharing what I found that has helped me may help others, but right now for me, the past has come to a halt. But my mind feels like it is being hurled in a whirlwind. I'm throwing some negative thoughts around inside my head because I'm having troubles with remembering things, and spelling words and pretty much enjoying myself. That just doesn't happen enough. Can't seem to get talking to anyone without putting my pain first.

Just sitting in my living room not having a schedule and not working for the last six months have me feeling like I'm hanging on to the side of a cliff without being able to see how far of a drop it is below me. I miss being able to challenge myself at the work I can do. I am so limited. I can do a small amount of things through out the week for myself including driving short distances. I can't go far because the constant moving around is a traveling trigger for my flare ups. I am searching for office work because unemployment is running out at the end of this month, no idea if welfare will help me out until I hear from disability, I'm appealing. I don't know if I will even be able to stay all day at an office. Sitting to long triggers flares. How can I work if I will need the ability to take the time I need when I need it to take action on this pain? As I was saying above, my past has come to an end. This new beginning has started with uncontrollable flares of pain, with constant everyday pain. Plus my mental frustrations just trying to communicate with others and always correcting myself when I spell words or speaking. It just took me 40 minutes to type this, because I have to go back over every word to make sure I'm spelling the words right and to make sure I didn't add more words than I needed to make a sentence. I notice that when I first write out my sentences, I only write out about half of the sentence and skip to the next one. I can't figure why that is about.

I'm really not trying to complain but wish I could see through the coming weeks to find out the answers I want today. So I can make better decisions for later.

Now I spelled three words I didn't need to use for this sentence and had to make at least 15 corrections with spelling out the words.

Is there any hope ?

Audrey

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Hi Audrey

I have been of work since July 2013. It takes a while to get used to being home. I have the problems with words and typing.

We changed some of my meds and it is not as bad. Depression was a big issue with me and my doctor sent me to mental health where you pay by how much you make. I hope you feel better soon.

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Hello surffishgirl
your my first reply as i just signed up today.I take it your transitioning from a working person to disabled.Its how we that have worked for a living identify ourselves.When we are no longer that person its a huge loose of who you are.At first l truly was lost,meaningless. feeling.But after a while i started a nee life as you stated.Being sick is a full time job that really has no benefits ,lol…Anyway Lord bless and be good. waynebo

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Hi Audrey. <<<<HUGGGSSSSSSSS>>>>

Yes, there is hope. After you have been here for a while, you'll be able to see who is suffering on that particular day by their spelling errors, messed up sentences, etc. For a while my pinkie hurt so badly that I couldn't press down on the shift key for making capital letters so I skipped doing capital letters! Yes, you'll see it in all of us. I mean, the pain has to go somewhere. I think that it literally streams out of our fingers and into the keys we strike. Okay, not literally but almost. There are days when I want to hunt down the unknown dead relative who passed this on to me and SCREAM at her! LOL, okay maybe I can't do that but it's soooooooooo tempting.

Fibro very much affects our mind. I told another person that Substance P is found in fibro. Researchers found that it not only affected pain levels but depression and anxiety as well. We can't help the depression. It's part of the package.

Maybe you can come up with a part time business that you can start from home. Get this: someone is making a fortune selling crocheted turtle covers for turtles. If they can make money on turtles, perhaps you can find a niche as well. I'm going to try selling very small things on EBay. And handmade jewelry too. When I feel well enough to, which is always up in the air, as you well know.

Other things you could do would be crosswords or jigsaw puzzles. I love crosswords as they do challenge the brain. Or maybe you could volunteer at a local pet shelter. Years ago, I used to pet cats who had been feral. It helped them to get used to humans and accept an eventual furrever home. And, okay, we aren't senior, but what about going to senior center events? i think you just come when you can. Or perhaps find a local fibro support group.

Honestly, i was facing exactly what you are right now until I visited a friend in Florida. On my third trip, she said something like she wanted me to get better and she wanted the old me back. I kind of laughed and said that I was still the same me, just with an illness. She responded, "no you're not, you used to be so vibrant." As soon as she said that, something clicked within my mind. Maybe I really HAD changed due to the fibro. Maybe I did need to re-discover the more vibrant "me." And that's perhaps true of you, too. You need to find a way to re-establish your link to the more vibrant part of you. Of course, not by claiming you're all better and can do everything again. But maybe it's time for you to find something that you're passionate about and work on it as much as you are able to.

And coming here is also helpful. We know what you're going through and feeling, and we understand. Family and friends may mean well but they truly don't get it. Heck, even I myself don't get it, since the pain love to jump around and hurt in 20 different but new ways.

I hope this is a bit of a help to you. Just do know that I care and want to help you to stabilize a bit from the shock of getting fibro.

Gentle hugs,

Petunia

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Exactly “a holding pattern” all of us will go through this.You keep thinking your going to the doctor and that cure or treatment.when you accept this is it then you can work on your new llife style. I always tell people that have met me aftet i got sick that they have never met me.I just a shadow of my former self,but it can always be worse so i enjoy the moments i can. l.b wayne

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Wow... I read this and it was as though I was reading something I'd written myself. Same employment issue (though I'm not on unemployment because I'm afraid that will mess with the disability thing). Similar disability issue (have to start all over because my PCP didn't have enough letters behind her name and my lawer was a joke). Same spelling issue. I used to be a walking dictionary and now I make mistakes I wouldn't have made when I was 6! Same not finishing sentences issue. I have to read what I write over and over. It can take me several tries to fix one single word because I keep messing up somehow!

Drives my other half nuts. I'll start a sentence mid-thought and he'll have no idea what I'm talking about, or I'll be stuck trying to think of a word and he'll be trying to guess what it is, like scherades (no idea on the spelling of that anymore. Ha!)

Will catch up on this thread later. I hope there are some helpful thoughts! Thanks so much for posting. Gentle hugs!

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Thank you for being there, all of you. I am so blessed to find out what is going on under my skin and I am very blessed to have all of you in my computer, lol, at my finger tips, lol, so I can lean my head on your shoulders. I really just don't know what to expect next month. But I will hold my faith the best I can. I would feel so much better to just know if state aid will help me out until disability lets me know. I can't see me working without needing time to tend to my hurting. I mean mentally, I ignore some of the pain, then I say we are just going to have to hurt through some more of the pain, then the pain really gets flared because I ignore it, then ignore it some more to try and get through the day. Oh then where I live there are many jobs but the jobs that I believe will have a better pay are an hour away from me. Driving always bring on flares, and once on flare starts its only a matter of a short time before the rest of them catch on.

I don't know what is really expected of me through this disability case. I just know that I am trying to be as honest with myself as I can be. I don't want to be asking for something that I don't need, but I am asking because I have good reason to ask for this chance to stay out of work because my pain requires a good amount of my time and I can't take a bath at 1:00 pm when I'm at work and try asking to leave early so I don't have to drive longer in rush hour. I don't go out as it stands unless I have to or I really need to get some air. I'm working on walking again. I would love to start dating again, that I really miss !!! I can't stop stressing long enough to let anyone know I can have a good time and of course I turn into a sore smiling pumpkin with squinting eyes, before 10:00 pm and feel like calling it a night. What can I do? you don't have to answer that..

I guess I just needed to let some of this out of me. I really don't like to complain, or worry, I like to find solutions to my problems and my thoughts are out getting dry cleaned. I will call state aid department tomorrow. Maybe I will find out from some one what I should expect, and maybe I will ask my attorney to about state aid. Thank you for your thoughts. I have two things to do tomorrow besides go to physical therapy. Hope I will find relief.

Thanks again to all of you !!!

Audrey