For those with disabilities

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Jezebel9
Jezebel9 Posts: 396 Member
in Motivation and Support
I am a permanently and totally disabled veteran.
I want to commend you for making it here to MFP. I will not pretend to know everything you have gone through to get to this point, it is a different road for everyone. Do not let anyone bring you down or demoralize you or get in the way of you using this site to the best of your ability. There will probably be days when you can do more, and some when you can do less, and even periods of time when you can do nothing. Many people are not comfortable with that, and in haste, lack of wisdom or maybe anger, they lash out or say things that are hurtful.
It is hard to be powerless, and for some people it is terrifying to acknowledge... and they refuse to believe it.
Do your best; only you know what that is.
At the end of the day and at the end of this life, win, lose or draw- you will have the satisfaction of knowing you gave it your best shot.
For some people it is a milestone to be able to dress themselves or to move their bodies- at all. We are all very different, face different challenges and have different levels of success.
I wish you all the best this life has to offer.
JZB
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Replies

  • kimdarren
    kimdarren Posts: 76 Member
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    Terrific words of wisdom.

    I became disabled 12 yrs ago, but my disability isn't from and accident, it was a chronic illness that had been missed for many years. Everyone considered me to be a hypocondriack (not sure if that is spelt right), and it got to a point that I believed them. Then one day, I woke up, tried to walk my two boys to school, and collapsed when I got in the door and haven't been able to walk unaided since. To cut a long story short, I was diagnosed with Systemic Lupus Eurethamatosis, and since then I've developed osteoporosis, fibromyalgia, anemia, rheumatoid arthritis, and I am currently undergoing analysis of my eyes as I can no longer see some colours (a side efffect of some of my medicines from long term use). Whenever I have 'flare up' I'm wheelchair bound for anywhere from 3 days to 3 weeks. And everytime I have a flare up I lose more daily mobility than I had before.

    I've put on at least 42lbs since I was officially diagnosed, but 100lbs since I got married in '88. I've been trying EVERYTHING to lose weight but because I've been adivised to not put any stress whatsoever on any of my joints, I am limited to walking (when I can aided), or walking in a swimming pool.

    To date I've lost 19lbs which I NEVER, EVER thought I'd be able to do. MFP has been a Godsend and the friends I've made are priceless. I completely agree with you.

    Kim x
  • AlissaMyron
    AlissaMyron Posts: 27
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    Terrific words of wisdom.

    I became disabled 12 yrs ago, but my disability isn't from and accident, it was a chronic illness that had been missed for many years. Everyone considered me to be a hypocondriack (not sure if that is spelt right), and it got to a point that I believed them. Then one day, I woke up, tried to walk my two boys to school, and collapsed when I got in the door and haven't been able to walk unaided since. To cut a long story short, I was diagnosed with Systemic Lupus Eurethamatosis, and since then I've developed osteoporosis, fibromyalgia, anemia, rheumatoid arthritis, and I am currently undergoing analysis of my eyes as I can no longer see some colours (a side efffect of some of my medicines from long term use). Whenever I have 'flare up' I'm wheelchair bound for anywhere from 3 days to 3 weeks. And everytime I have a flare up I lose more daily mobility than I had before.

    I've put on at least 42lbs since I was officially diagnosed, but 100lbs since I got married in '88. I've been trying EVERYTHING to lose weight but because I've been adivised to not put any stress whatsoever on any of my joints, I am limited to walking (when I can aided), or walking in a swimming pool.

    To date I've lost 19lbs which I NEVER, EVER thought I'd be able to do. MFP has been a Godsend and the friends I've made are priceless. I completely agree with you.

    Kim x

    Kim,

    I happened on this thread by chance. And I'm glad I did.

    I love you spirit and way to go on the 19 lbs! I don't care who you are, getting in shape is hard, especially if there are additional obstacles in your way.

    It is all about the mindset and I applaud you on coming this far. I hope to have same determination ( and success) as you some day.

    Fight on the good fight!
    Ali :)
  • cessnaholly
    cessnaholly Posts: 780 Member
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    You too.
  • Jezebel9
    Jezebel9 Posts: 396 Member
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    Thanks for the kind and thoughtful responses... I appreciate that. Your story and ones like it motivate me to keep on keeping on.
    8}
  • msracefan
    msracefan Posts: 55 Member
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    Jezebel and Kim, you are both wonderful! Thank you for sharing!!
  • SmartAlec03211988
    SmartAlec03211988 Posts: 1,896 Member
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    I've been disabled since birth, but up until about nine years ago I was active and very fit. Then an injury kept me from being active for so long that even after I was healed I never got back into the swing of things and bang - it seems like I woke up 90 lbs heavier.

    I always used my disability (Spina Bifida) as an excuse as to why I couldn't lose the weight, as if I never was fit before. It had been so long since I was fit, that I didn't even remember the time when I was, even when shown pictures as proof. Then one day I went to the doctor and I had to get on the scale, and found out I was 206 lbs. I knew I was overweight (and hid behind a curtain of false self-confidence even though I had none), but I never thought I was THAT over weight. For a person that is only 5'0" tall, that is INSANELY heavy. It was the trigger that got me to turn my eating habits around and exercise more.

    Within the first three months I was down 36 lbs, and 11 months after that fateful day at the doctor - not even a year later - I was down to my goal weight of 125 lbs. I stopped making excuses and did what I could, and kept at it and it worked. I will never accept another excuse from me again, because there is no excuse; I cannot continue to ruin myself out of laziness and the desire to eat poorly because its convenient or tastes good.

    Although I still have to will myself to exercise, I do it. Because I know what will happen if I go back down that road of no activity; I will go back behind that curtain of false self-confidence appearing as if I am happy, but hurting badly on the inside. I'd rather feel positively confident, happy, and fulfilled in real life, not wishing it was so.
  • PuggleLover
    PuggleLover Posts: 261 Member
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    I used to be very fit - in fact, I played professional soccer. There wasn't a sport I wasn't good at. Then I got a bad flu. That turned into mono and that turned into chronic fatigue syndrome. Eventually I was diagnosed with SLE, fibromyalgia, anemia, rheumatoid arthritis, and liver problems. In the midst of all this I was exposed to toxic mold and that made things worse - much much worse. I also have extremely bad female issues that require surgery and constant medication.

    I would love to be able to go gung ho and do a 30 day shred or give it my all in P90x but if I do, I will run a fever, my glands will swell up and I won't be able to walk for at least two weeks. I have tried before and ended up in the hospital. Just do it isn't in my vocabulary.

    At my heaviest, I weighed 192 and at my lighest, I weighed 122. The yoyo effect wasn't me trying to lose weight, it was sickness that drove it. But this time is different. I got sick... had to have my gallbladder out... had complications, got depressed and assumed I would be on the road to weight gain. I was right, but cookies and ice cream every night didn't help.

    So, here I am... 3.5 pounds down and thankful when I have a good enough day to walk my dogs. For every pound I decide to lose, and I know isn't a result of a sickness, it is more than a small victory. It's me climbing a mountain. While some can decide to burn 1000 calories in a work out, I can decide to get out of bed. :)
  • Jezebel9
    Jezebel9 Posts: 396 Member
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    Within the first three months I was down 36 lbs, and 11 months after that fateful day at the doctor - not even a year later - I was down to my goal weight of 125 lbs. I stopped making excuses and did what I could, and kept at it and it worked. I will never accept another excuse from me again, because there is no excuse; I cannot continue to ruin myself out of laziness and the desire to eat poorly because its convenient or tastes good.

    When I was in basic training in the Army we were doing squats. Not the kind, the way you are supposed to do them (butt out, knees over ankles) but the wrong way- I didn't know. We always did something like 500 or some crazy number. I tore my patellar tendon and the next morning before the sun rose the company went on a run over a few (misery and agony) hills. Wow, my knee was killing me! But one of my drill sergeant's favorite things to say was "there are no excuses". I tore my knee up and everyone thought I was faking or "making invalid excuses." So knee surgery waited for many years, and I couldn't run. After the surgery, I began again, with arthritis.
    What might my career (or my life) have been like if I had been allowed to make an excuse?

    I appreciate your honesty. I think many people, including the disabled, probably have made up excuses for maintaining bad habits (eating bad food, not exercising)- me included. But there have been many times I spent hours trying to convince myself to put on foot on the floor out of the bed. I tried at least 20x once. Just to get out of bed.
    I also appreciate your resolve- determination.
    And I m very grateful to be here on MFP, able to do so much. Not everyone can.
    Rock on~
  • Jezebel9
    Jezebel9 Posts: 396 Member
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    Jezebel and Kim, you are both wonderful! Thank you for sharing!!

    Thank you!
  • Jezebel9
    Jezebel9 Posts: 396 Member
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    Within the first three months I was down 36 lbs, and 11 months after that fateful day at the doctor - not even a year later - I was down to my goal weight of 125 lbs. I stopped making excuses and did what I could, and kept at it and it worked. I will never accept another excuse from me again, because there is no excuse; I cannot continue to ruin myself out of laziness and the desire to eat poorly because its convenient or tastes good.

    When I was in basic training in the Army we were doing squats. Not the kind, the way you are supposed to do them (butt out, knees over ankles) but the wrong way- I didn't know. We always did something like 500 or some crazy number. I tore my patellar tendon and the next morning before the sun rose the company went on a run over a few (misery and agony) hills. Wow, my knee was killing me! But one of my drill sergeant's favorite things to say was "there are no excuses". I tore my knee up and everyone thought I was faking or "making invalid excuses." So knee surgery waited for many years, and I couldn't run. After the surgery, I began again, with arthritis.
    What might my career (or my life) have been like if I had been allowed to make an excuse?

    I appreciate your honesty. I think many people, including the disabled, probably have made up excuses for maintaining bad habits (eating bad food, not exercising)- me included. But there have been many times I spent hours trying to convince myself to put on foot on the floor out of the bed. I tried at least 20x once. Just to get out of bed.
    I also appreciate your resolve- determination.
    And I m very grateful to be here on MFP, able to do so much. Not everyone can.
    Rock on~

    sorry S.A. I am still getting the hang of how to quote etc.
    8)
  • bilzprincess
    bilzprincess Posts: 107 Member
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    Thank u for ur service, Veteran, and thank u for this thread. I am honored and humbled by the dedication it takes everyone to log on and claim their Power!
  • Only1tracie
    Only1tracie Posts: 31
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    What a wonderful thread. My daughter is almost 13 and suffers from SLE. Reading some of these post makes me better understand some of the things she is going through. Congrats to each and every one of you that are here on this site trying to get healthier or looking for ways to get healthier.
  • ambitious01
    ambitious01 Posts: 209 Member
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    I commend everyone's accomplishments. I have my own struggles with degenerative disc disease. I quit smoking 2 years ago because of a cancer in my thyroid. The thyroid had to be removed and before I knew it I had ballooned to over 200 pounds. So, by then I couldn't get around at all. I gave up on my back after 3 surgeries and decided to skip it. The sciatica in my left leg was nearly intolerable and then I broke the opposite foot. I consider that was probably one of the best things that could have happened. From there I decided to build muscle and not die in that bed. I still have a long way to go, but I'm on the right path.
    But I know how hard it can be. Every battle won is a HUge accomplishment.
  • Jezebel9
    Jezebel9 Posts: 396 Member
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    Thank u for ur service, Veteran, and thank u for this thread. I am honored and humbled by the dedication it takes everyone to log on and claim their Power!

    8)
    you made me smile! Thanks! Yes!
  • bkscott5
    bkscott5 Posts: 53 Member
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    I have to thank everyone who posted on this topic. I got so upset today reading another post where someone said that she was tired of hearing disabled people make excuses for not working out. This is a very sensitive area for me for several reasons, when I was able to return to work but only part time I took a job working with disabled children, I have a mother with RSD, I have a daughter and a friend with CFS, I have chronic pain 23/7 since 1998. I have headaches/migraines 5-7 times a week and can be in bed for 3 days with a migraine, I have pain in the top part of my neck that I can't spell but my dr will have to give me shots when it gets real bad, I really don't want to keep boring u with all that is wrong with me so just some highlights-cancer just finished chemo a year ago, a portion of my lung was taken out, very small, 3 problems with my l4&5 s1, Below knee amputation,. I have several spots head to toe that causes me pain. And this girl from the other post believes we have no excuses as to y we can't get up ever day and exercise and lead a completely normal life. So thank u all for sharing that we will do what each of us can do and not put those of us who couldn't do anything that day or maybe even any day down. Let's all do what we can to live a good life for us and try to do as much as we can to be what we want to be!
  • iwantahealthierme13
    iwantahealthierme13 Posts: 337 Member
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    http://www.godvine.com/Man-Barely-Able-to-Stand-on-his-Own-Does-the-Unthinkable-Amazing-1476.html

    This might be an inspiration to you and other people who read this. It was for me.

    Thank you for this post. I was born with mild cerebral palsy and also have a mental illness (mild depression/bipolar) some days I don't want to do anything.... so I hear you! Thanks for sharing and above all, thanks for your service.
  • theartichoke
    theartichoke Posts: 816 Member
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    Thank you for sharing your experience, strength and hope. I'm grateful for your service to our country and all that you gave for it, and us. I hope everyone, disabled or not, reads your post and takes what you said to heart. Thank you.
  • RunawayDaisy
    RunawayDaisy Posts: 21
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    You all inspire me! I have dystonia, I suffer from muscle spasms ,seizures and migraines. Stress, tension, movement alone can aggravate me and as a result I have not been fit for years. The disapointment, the depression, the fear of debilitating episodes really took control over my life. I want my life back, I want to live to see my children become parents themselves.
    I have been working out 2 straight weeks, I'm very limited in what I am able to do, but I will myself daily to do it. I have even continued the physical activity in the midst of a spasm and forced myself to keep going. My body hurts-everywhere...but I keep doing it.

    For those of you with muscle and joint issues- I must say the steam and dry saunas have been extremely beneficial. If your with a gym I highly suggest sitting in one after your workout for as long as you can. My muscles are far less stiff and sore after my workouts. You also burn a lot of calories, and it's not just "water weight" This has become is my "woo sa" moment of the day.

    I hope losing weight and adopting a healthier lifestyle will prolong my life by improving my health. I'm so happy to have been introduced to this site...I love the support and encouragement. And I love that you all are brave enough to share your challenges in dealing with disease, or disability, and finding the will and motivation to improve your lives in any way that YOU can. Ignore the haters, we are all unique...the point of this site is to promote positive feedback from our individual journey's, while cheering on others on their's.
  • Panda_1999
    Panda_1999 Posts: 191 Member
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    Thank you for this thread, especially after the "hurtful" thread earlier today. It brought me to tears. I too have suffered a major illness over the past 2 years and it is a fight to regain functionally again.
  • Kalynx
    Kalynx Posts: 707 Member
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    I have to thank everyone who posted on this topic. I got so upset today reading another post where someone said that she was tired of hearing disabled people make excuses for not working out. This is a very sensitive area for me for several reasons, when I was able to return to work but only part time I took a job working with disabled children, I have a mother with RSD, I have a daughter and a friend with CFS, I have chronic pain 23/7 since 1998. I have headaches/migraines 5-7 times a week and can be in bed for 3 days with a migraine, I have pain in the top part of my neck that I can't spell but my dr will have to give me shots when it gets real bad, I really don't want to keep boring u with all that is wrong with me so just some highlights-cancer just finished chemo a year ago, a portion of my lung was taken out, very small, 3 problems with my l4&5 s1, Below knee amputation,. I have several spots head to toe that causes me pain. And this girl from the other post believes we have no excuses as to y we can't get up ever day and exercise and lead a completely normal life. So thank u all for sharing that we will do what each of us can do and not put those of us who couldn't do anything that day or maybe even any day down. Let's all do what we can to live a good life for us and try to do as much as we can to be what we want to be!

    thank you bk! I have congestive heart failure and iffy kidneys - my focus has been lower sodium which has forced healthier foods and lower calories ...i'm -49.9 as of this morning since late january. I tried to exercise for a while in march but got such bad ankle pain (diagnosed as arthrits) and am unable to take much for pain due to water retention issues. I think some consider that as an easy way out of trying, but when you can only walk 1 minute without being so winded you think your heart and brain will explode from the pounding, ear pressure like you are on an airplane, and inability to walk without severe pain for 4 hrs when you wake up in the morning ..you have to focus more on diet than exercise and a lot of MFP cannot respect that! oh and I might have a blockage in my lower heart region but they cannot diagnose it without going up vein in groin at this point due to my 'heavy chestedness'....

    Its weird to justifty personal decisions like not exercising when trying to lose body fat but I do know that the more i do every day the easier it gets - if I can do it pain free i am going to keep doing what i'm doing..thank you again with your post/support!!

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