I worry if i will survive.
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I worry if i will survive.

This is a discussion on I worry if i will survive. within the Physical Health forums, part of the Mental and Physical Health category; i have fibromyalgia. but i also have lupus and sarcoidosis. i live with chronic pain. a chronic back ache, an ...

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Old 11-19-11, 11:57 AM   #1
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Default I worry if i will survive.

i have fibromyalgia.
but i also have lupus and sarcoidosis.
i live with chronic pain. a chronic back ache, an ankle that was sprained so often that now it always hurts.
i have a leg that swells and causes pain, because the circulation of blood system is messed up. blood pools in the leg. the entire leg blows up, the knee, the cafe. i can't wear nonstretch jeans because one leg is bigger than the other.
i also suffer with DID, or multiple personalities. it's somehow connected to my physical body, even though some would consider it to be a strictly emotional disease. it's like i have biofeedback or something, because i can think myself into a panic attack, or, i can think myself into a calmness; i can even think my pain away sometimes. it's very weird and hard to explain.
i am complicated physically and emotionally.
when i get scared or start to think about my abuse past, i get physical symptoms. like dizziness and a stomach ache. like pain in my abdomen and back and sides. like some invisible hand is grabbing me.
it's hard sometimes to tell if the pain is orginating from some internal organ problem or if i'm scared and remembering the past.
there are so many things i have to do in order to just get out of bed in the morning!
i have to figure out how badly my back is hurting, and see how slowly i have to get up.
i have to see if irritable bowel syndrome is at work, if i have to go to the bathroom or not.
i have to see who i am, as DID can have me be the little girl, or the adult, or the teenager; if i am the whore or the business woman. i have to check my hands to see if they are a child's or not. i have to look around and see what's on the floor, did the prostitute have visitors last night?
i have to put on my compression stocking first thing before i get up to walk anywhere, because without it, i can't walk due to pain and swelling.

i tried to hold a job. to go into the office. but i was distracted by a million things. the flashbacks. or the fibro pain. or irritable bowel syndrome. of Reynaud's phenomenon, that's a sensitivity to cold temperatures -- 70 deprees registers like 28 degrees to my body. flashbacks make me behave like a child or a whore. i wet my pants at work out of extreme fear. i would hide at work, thinking my abusive father was around. body pain would make me cry as i sat at my desk trying to work. i couldn't concentrate because i was overwhelmed. and trying to be a co-worker, you know, go to lunch with the girls and make small talk, i couldn't do it. i was in too much body pain. or in too much flashback emotions, emotions of automatic but inappropriate fear and anxiety. completely distracted and unable to focus and do what I wanted to do at work. my boss was pretty nice about it though, as he seems to understand that if it were up to me, I would work like any normal person would. and it is so nice to have a boss who doesn't accuse me of being lazy or unmotivated. he knows how hard i work everyday. he is a great support, my boss.

all of these health problems: lupus, fibromyalgia, sarcoidosis, DID, chronic pain, chronic fatigue, back ache, leg pain, ankle pain, irritable bowel syndrom, frequent diarrhea, feeling ill also called malaise, feverish, cold, Reynaud's phenomenon, pain in hands and fingers, painful feet and soles of feet, and of course depression, it makes me very angry. because i don't get to do what i want to do, and instead i am forever trying to catch up, trying to appease my screaming body. forget my hopes and dreams. i have to tie and re-tie my shoes, try to get my feet to stop hurting. i have to sit on the toilet for hours, sit there because shitting my pants would be a mess to clean up. i am bouncing from one leg to another, trying to distract myself from the intense back ache, or i'm singing louldy again trying to distract myself from the back ache. nobody around me understands why i am so mad. the fibro pain is so intense that i can't just simple lie in bed. the pain knaws at me, forcing me to want to run away from it. i can't sit still. the pain tears at me, and i want to brush it away, or knock it off, or kill it. my boss told me to just be, to just sit with the pain, but the kind of pain i have does't allow me to. the pain is too intense.

i am going out of my mind trying to figure out a way to live each day, trying to figure out a way to live with pain and exhaustion, with flashbacks and fear, with limited experience and limited help, with very little money and zero patience. i worry about myself, if i will surivive.
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Old 11-20-11, 11:19 PM   #2
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You are going through a lot. Nobody who knew all that about you would be able to say you are not doing as much as you can. You are doing more then most people.

Try to keep your body warm for the Reynauds, I'm sure you have been told that already. It is helpful to dress to the level of insulation your body needs so you don't have the vasospasm.

Have you tried anything like meditation for your pain? Some people with pain have told me it helps, but chronic pain is something I have only limited experience with. I'm afraid I may turn into the a big baby if I did have it, so hats off to you!

You are managing a mountain of things all at once with each day of activities, so give yourself a pat on the back for all you do. Nobody can say how long life may last. Take it one day at a time, and try not to worry about how long it may last...
We have to become creative problem solvers, not just tolerant burden barers.
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