So many people here

[The Grim Creeper]

When I read your stories I know them all as I read them. I'm gonna share this for me, maybe because I need to.

I've survived nearly 20 year with undiagnosed fibro and was diagnosed last month. The struggle brought me to the edge of giving up on life many times but thank God I'm still here.

Far worse than the pain and exhaustion was not knowing, and not being able to tell anyone what was wrong - being helped up by strangers when I was too weak to make it home with no explanation for them. Every day on the verge of collapse with no reason. Surviving.

I had a mild elation after my diagnosis, dont know why but now I'm sad. I wake up crying. Always had hope that someday I'd wake up and it'd be over, no reason, no explanation just gone. On hearing that it doesnt go away -I dont know how to plan a future like this - how to get anything done, or earn. There has to be a reason for our condition, and a cure.

Lol, Hi btw to everyone - Kinda forgot that bit and it's important!

As a parting note I'd like to say as long as long as I draw breath I will help as many people as I can. That keeps me going. But it's frustrating, - the whole thing.

 

[sureimsore]

Hi GC, Sorry you've been suffering with this for so long.

I understand how that is...they finally give a name to something so you finally feel vindicated, proving you are not lying or crazy. But then once that party is over, you are still left with a disorder that really doesn't explain what is happening to you. It's like having constant headaches. Yes, they are headaches, but what is causing those headaches? Could be hundreds of reasons why. And then you are still left the disorder, with no clue for a cure.

It's OK, I've been there, waking up crying, the anxiety, getting angry. These feelings wax and wane.

<<<I dont know how to plan a future like this - how to get anything done, or earn.>>> I empathize, I think about this all the time.
But the ticket is to be a little Buddhist(?) about the whole thing, not to get overwhelmed. "Cool the mind." There's a quote,
"When eating an elephant take one bite at a time."

 

[Destiny3614]

I love this place, it's so great to find other people going through the same thing and can understand how difficult an insivible illness really is. Before finding this forum I felt so lost, like no one understood how I felt both physically and emotionally.

 

[The Grim Creeper]

But the ticket is to be a little Buddhist(?) about the whole thing, not to get overwhelmed. "Cool the mind." There's a quote,
"When eating an elephant take one bite at a time."

Thanks sureimsore, for the reply. I cant find a bite size pace yet. The more I rest the more deconditioned and tired I get. The more I push it - same deal - wrecked. There's no winning.

I love this place, it's so great to find other people going through the same thing and can understand how difficult an insivible illness really is. Before finding this forum I felt so lost, like no one understood how I felt both physically and emotionally.

Same, and I'm only after joining. Now I feel more of a need to find an answer - because there's so many people need it too. Only thing I've narrowed down in all these years that helps me is little sleep, tiny ammounts of magnesium before bed and food. Helps my mood but makes the pain and tiredness worse. Cant wait to read other peoples take on what helps them. Anything work for you, even minor?

 

[sureimsore]

Thanks sureimsore, for the reply. I cant find a bite size pace yet. The more I rest the more deconditioned and tired I get. The more I push it - same deal - wrecked. There's no winning.

Well, didn't mean what you can do physically, but rather mentally, in regards to you not being able to plan for the future. We all can make plans, but realize that they might not come to fruition. That goes for everyone in the world, with sickness or not. So the part about "bit by bit" is to take small actions/small plans, so that we don't get overwhelmed.
I make long-term and short-term plans, but I stop myself when I get to attached to the outcome.

 

[The Grim Creeper]

Thanks sureimsore, for the reply. I cant find a bite size pace yet. The more I rest the more deconditioned and tired I get. The more I push it - same deal - wrecked. There's no winning.

Well, didn't mean what you can do physically, but rather mentally, in regards to you not being able to plan for the future. We all can make plans, but realize that they might not come to fruition. That goes for everyone in the world, with sickness or not. So the part about "bit by bit" is to take small actions/small plans, so that we don't get overwhelmed.
I make long-term and short-term plans, but I stop myself when I get to attached to the outcome.

You're right of course. I think maybe it's fear on my part, of not coping - but thats probably shared by everyone, fibro or not. What would be an example of a small plan?

 

[sureimsore]

With this in mind, I use Outlook on the computer for my tasks/appts since my memory isn't the greatest anymore ; P But if you don't have MS Office, you can use Google's calendar.

That's the first step, having something to organize and see things in writing. If I keep everything in my head I get overwhelmed.

I start with things that need to be done on a daily basis and create reoccurring appts; vitamin regimens, places I need to go (Dr. appts, library to
return books, store for cat food, etc). I also have it set up for my health, so I can go in and type up whatever goes on with me during the day (headaches, BMs, new ailments, etc)--this can be helpful to make note of anything you need to discuss with the doctor, or just try and see a correlation of what helps/harms you. I'm also trying to find work, so I set up reminders to look for a job online at a specific time everyday, and I dedicate that hour for the job search.

For a shorter long-term plan, I have set up for the first week of every month to do monthly kitchen cleaning (the oven, wash outside cabinets, etc). I give myself a week so I can do whatever I can on each day. And I have set up contingency plans reminders: If I can't find a suitable part-time job on my own, I will try going to some employment agencies that help people that are disabled this month. In a couple of months, if nothing has changed, it will make 1-year and I will apply for SSDI.

So while this all sounds pretty anal, I find it works and helps decrease the anxiety.

 

[The Grim Creeper]

Genuine thanks for that. I do keep notes to remind myself that bad spells do end and what helps/hinders. Completely understand the need to have everything organised and the overwhelming feeling of trying to remember it all. I'm going to take your advice and expand it to that extent.

With this in mind, I use Outlook on the computer for my tasks/appts since my memory isn't the greatest anymore ; P But if you don't have MS Office, you can use Google's calendar.

That's the first step, having something to organize and see things in writing. If I keep everything in my head I get overwhelmed.

I start with things that need to be done on a daily basis and create reoccurring appts; vitamin regimens, places I need to go (Dr. appts, library to
return books, store for cat food, etc). I also have it set up for my health, so I can go in and type up whatever goes on with me during the day (headaches, BMs, new ailments, etc)--this can be helpful to make note of anything you need to discuss with the doctor, or just try and see a correlation of what helps/harms you. I'm also trying to find work, so I set up reminders to look for a job online at a specific time everyday, and I dedicate that hour for the job search.

For a shorter long-term plan, I have set up for the first week of every month to do monthly kitchen cleaning (the oven, wash outside cabinets, etc). I give myself a week so I can do whatever I can on each day. And I have set up contingency plans reminders: If I can't find a suitable part-time job on my own, I will try going to some employment agencies that help people that are disabled this month. In a couple of months, if nothing has changed, it will make 1-year and I will apply for SSDI.

So while this all sounds pretty anal, I find it works and helps decrease the anxiety.

 

[sureimsore]

It can be tedious at times, but I think it will help you in keeping the anxiety away. Also, when I feel I am not up to doing certain tasks, I just change the date for the next week. As long as I know I have it on a list I feel OK.