How disabled are you?

Discussion in 'Fibromyalgia Main Forum' started by IngaDinga, May 13, 2003.

  1. IngaDinga

    IngaDinga New Member

    I know.......misery loves company..and, man....am I miserable.

    Everything I do is hard. Getting my daughters to school in the morning is near impossible these days. I have constant chills, headache and feel like crud. I can't stand very long because my heart races and my BP drops. I have arrhythmias.

    There is no way I can work but my disability was denied.
    I am able to shop and cook (very simple meals) . I go to my daughters school functions. But, honestly, I park as close as possible , walk in, sit down and suffer through whatever it is (concert, parent teacher conference) and then get myself home as fast as possible. I don't think anyone that 'knows' me thinks I am very sick just by looking at me.

    But, I need to hear from others ... how sick/disabled are you?

    A very sad and lonely Inga.... :(
  2. loopyloo

    loopyloo New Member

    I never thought of my self as disabled untill the last 6 weeks i can hardly walk without holding on to some one, i cant stand up for long as it hurts, i have spent a lot of time sleeping or laying down as i hurt so much and cannot drive or go out on my own now some one asked me if i had a walking stick i never even thought about one i suppose it would help me keep my balance more but i dont even no where you would get one from i am in the UK any ideas do they have like walking stick shops or somethink.

    Loopyloo xx
  3. Dara

    Dara New Member

    with me the degree of disability depends on the day, hour, or minute. It can change dramatically for no apparent reason. This is why it is impossible to hold down a job. I am very undependable and can not make plans ahead of time. I might feel great today, and tomorrow be down most of the day. On the worse days I feel that I've spent my whole day just getting dressed and that's my only accomplishment for the day. On those rare good days, I make the fatal mistake of trying to play "catch up", which I pay for later. I don't think there's anyway you can really put it in words since we have no way of knowing why some days are good and other days are terrible. I do know that as far as filing for disability goes, you should always describe your worse days, if you don't they'll think you're capable of working a full time job.

    Dara
  4. kerrymygirl

    kerrymygirl New Member

    Everything you said, ditto. I am in fl.,everyone is hot. I have hrs. shaking in chills. My temp 1 day went from 93.4 then to 98 deg. That is when I broke out in a sweat. Just the opposite of people when they have a fever and temp goe`s down, then they sweat. When my kids were home I remember feeling that way and I was trying to hold down 3 businesses plus being stalked. Which even made things worse. Every morn. I work on my attitude no matter how bad I am. I have decorated my home to surround myself with things that make me feel good. My home is set up like I did for the old folks, safe in case I fall,plus things I can grab onto. It is hard to stay positive, when our bodies go from 1 thing to another. I don`t even go to church since I am constantly shifting to make it through, people just look. Not being able to make plans,concentrate,etc. My family is all over the states now. Since traveling is too hard and cost $$$ I do not have I hardly see them anymore. We used to be close but most of my family doe`s not get it. Keep trying for your ss it took me 7yrs. because I gave up. They want you to go away. If you paid into it it is yours!!
    Have you gotton any more help on the dysautonomia? These are symptoms. My doc will not address my lyme or anything to do with my real prob. Even when I give him info. I am so sorry &truly understand your frustration. Do not be too hard on yourself. We are tuff people to live this way,many would have given up along time ago. I have had people tell me they could not handle it. Take Care, hang in there Kiddo.
    Sweet Hugggssss
    BTW people with heart or cancer etc. even have good and bad days, I do not know why we get so harshly judged. I have said this before ss dis. should just send someone in our homes for a couple days. See how we really live. Much cheaper for them and on us.
    [This Message was Edited on 05/14/2003]
  5. ForeverFlaring

    ForeverFlaring New Member

    The whole topic is hard to swallow. When you are young with no outward signs, it takes a long time to accept it. Some days I sit here and think..."yeah I can go back to work.." but then I remember what life was like for me after I got home from work. I was useless. I could not move from my recliner, and often sat in it screaming as each muscle spasm brought on a new wave of pain.

    So how disabled am I?
    The question isn't how disabled I am, it is how long I can sustain gainful activity for.

    Can I sit and type for hours at a time? No. I can sit here for about 5 minutes and type until my hands and fingers cramp up. So a typing job is definately out of the question.

    Can I sit in a chair and do something with my hands such as needlepoint? No...the same thing happens to my hands and I often mess up my stitches because I cannot concentrate.

    Can I sit in a chair and do absolutely nothing physical with my hands? No. My back muscles and my hips scream at me to get up. Some days I can handle sitting up for an hour or so, but can I sustain it for 8 hours? No.

    Can I answer phones all day long? No. The sensory overload from talking to just my mother on the phone for twenty minutes does me in some days. I know I could not handle it for 2 hours, much less 8.

    So, I think the whole question of how disabled you are depends on each person. Sure, I have great days. Well, not great..but good enough to where I think I could be working. But then I have to think about how it would be for me to wake up early in the morning, no afternoon naps, no loose fitting clothing, no forgetting permitted..all of these things I have to consider and realize yes..I am disabled.
  6. fifty1ford

    fifty1ford New Member

    Inga,

    I understand how much this really does suck. I have applied for and received handicapped license plates which helps a great deal. I can as close a possible limiting any walking from parking lots/ramps and it really helps.

    There are many mornings when I'd just rather not get up. Unfortunately, I have to work. There is simply no choice in this issue. I use a combination of suppliments, perscriptions (from a very understanding and excellent Dr.), acupuncture treatments (with Traditional Chinese Medicine), regular Chiropractic adjustments, and just about anything else that comes my way, or that I can afford.

    My workouts consist of Tai Chi and some sit-ups and push-ups in the mornings which takes about 30-40 minutes. This is the toughest thing that I've ever had to deal with, but it has made me stronger in spirit and I focus on what I can do rather than what I cannot.

    Don't get me wrong, there are still those times when I feel sorry for myself and get mad at the world, but I try to just let those negative feelings go. They only make things worse.

    Maybe this helps, maybe it doesn't. Just know that you are not alone and we are all struggling to get by. One day at a time.

    Peace and Warmth,
    fifty1ford
  7. kmelodyg

    kmelodyg New Member

    Inga,

    I can totally relate. ANd yes it DOES SUCK!! Lately I have been going through some major ups and downs. I've started to learn my limits somewhat, but still push myself too hard. I have so many errands and things that I save up until I am feeling "normal", that I do them all at once. On Monday, I drove around to 5 different appointments for about 5 hours for a sales job that I am doing. Yesterday and today, I could not get on top of the pain and all I could do was sleep. It is not easy. I am only 25 years old and I feel like I'm 70. I am waiting to hear from my disability decision, and am worried that it won't go through.I heard that it is a bad idea to tell them that you have FMS/CFS, and just list the symptoms. Hopefully it will work in my favor. I can't do anything that I used to do. I can't imagine having kids or a steady job right now. It would just be too hard on my body. Just trying to take it as easy as possible is the best key I think. Everyone recommends excerise, but I do a small amount of physical activity and I am bed-ridden for days. It is so scary because it' s getting worse all the time. Have you though about geting a lawyer to fight your case? That is what I am going to do if it dosen't go through. I will pray for you. Keep your head up, and remember that YOU ARE NOT ALONE!!!

    Lots of Love,
    Kathryn
  8. athome

    athome New Member

    Very---can't stand very long or walk very much or fast. Pain levelmost days is 5-6 on a scale of 0 being none and 10 being worst. Lately worse, and have been in bed most of winter and thus far this spring. If I get up and do a little outside or an errand or straighten up bit in house, I'm down most of the rest of next day. This is my worst and longest flare since first diagnosed in 1993. I had three years of being worse than that before finding good doctor and being dx, starting some treatment.

    My heart really goes out to those who are denied disability. I got my SSI fast once I applied, after 2.5 years of no work and total sickness. Had good documentation though, and doctor & therapist who filled out questionnaires with me and the friends who were asked for an assessment of how I was doing. While it was uncomfortable to monitor what they said so closely, I think all of us working together did it. My disability was actually awarded on the basis of suicidal depression. I think FM was not considered a valid reason till after the time I got mine.
  9. athome

    athome New Member

    Very---can't stand very long or walk very much or fast. Pain levelmost days is 5-6 on a scale of 0 being none and 10 being worst. Lately worse, and have been in bed most of winter and thus far this spring. If I get up and do a little outside or an errand or straighten up bit in house, I'm down most of the rest of next day. This is my worst and longest flare since first diagnosed in 1993. I had three years of being worse than that before finding good doctor and being dx, starting some treatment.

    My heart really goes out to those who are denied disability. I got my SSI fast once I applied, after 2.5 years of no work and total sickness. Had good documentation though, and doctor & therapist who filled out questionnaires with me and the friends who were asked for an assessment of how I was doing. While it was uncomfortable to monitor what they said so closely, I think all of us working together did it. My disability was actually awarded on the basis of suicidal depression. I think FM was not considered a valid reason till after the time I got mine.

    I find relating to my kitties, and in the past to our wonderful Golden Retreiver, listening to quiet music, and watching the birds at their feeder, being certain God has a plan for me, all help. You will be in my prayers.
  10. COOKIEMONSTER

    COOKIEMONSTER New Member

    Well to keep this short and sweet....my days consist of me peeling myself out of bed because I can't sleep because of the pain and these legs of mine just keep moving to a march...so why stay in bed....anything and everything I do is in increments of 10 minutes since I can't stand, sit or walk for long periods of time.

    I try and do housework in piece meal.....10 minutes I stand, 10 minutes I sit and so on....as my form of excercise.... and when that's complete..then I'm exhausted and it's me and the recliner.

    Usually I don't take a bath until the last minute if I have to go to the doctor or something....which is usually around 1:00pm....and believe me...it's hard even to think that I have to jump into the shower.

    I try and go to the market on a daily basis to prepare dinner because I can't carry to much at one time....again part of my personal excercise...

    Can't drive if the drives over a 1/2 because my hips and legs and ankles create a problem....so I drive behind people that are also driving slow so I don't get the you know what. :)

    I can't seem to fix myself up to look pretty anymore...no drive what so ever.

    I feel most comforable in sweats and t-shirts, which was a no-no in my book prior to this DD.

    I just received my disabled placard in the mail today....and I guess this says it all.

    There are a million things that I can't think of right now...but one thing I do have and that is my SANITY....well at least for now.

    Have a great day!
    Cookiemonster
  11. glittergirlgold1

    glittergirlgold1 New Member

    hey,i have been denied for ssd twice,i am getting a lawyer this time.their reason for denial the first time was that there were no x-rays,or cat scans that showed i even have anything wrong with me.typical,i am so disgusted with the whole thing ,i don't even feel like typing about it,the same old story everyday.one day its this,one day it's that,something different from one minute to the next.i am just trying to do the best i can.as for what everybody else thinks,:p (glittergirlgold1@yahoo.com)just hang in there,u will find your source of stregnth.
  12. Carolyn0508

    Carolyn0508 New Member

    There are many out here who share your experience. This is a very fickle DD. Some days, I can barely move and others I feel almost normal. I had to learn to prioritize what's important to get done and save my energy and strength for that. Then not feel guilty (or let anyone else make me feel guilty). I manage days much the same way CookieMonster shared - do a little, rest a little, do a little etc. I take my kids to the grocery with me so they can unload the cart and bring the bags in. Also, I don't get the "Mom, I told you I needed/wanted _______". Just please know you are not alone and the sadness will pass. Someday soon research may nail this DD down and come up with some universal relief for us.

    Cheers
    Carolyn