I have had to try to make a specialist understand what he has not experienced or seen, and it is very hard to get people to understand an illness that most people don't know. Ironically, I have had more understanding over the years after I developed an allergy to chocolate, then I have to my current health condition. After being told, it can't be that bad, and you just aren't pushing yourself once too often, I have spent the last few months frustrated. When I "push" myself, I pass out, and I am exhausted and have no energy and have to sleep. Most days, just getting on the computer to write, and respond means I have to take a nap every day. Do I feel lazy? Yes, that is why all of those statements hurt so much. I am fighting feeling that I can no longer take care of my family, and even have no income until either Social Security decides I truly cannot work, or my retirement board decides the same thing, and either way, it has already been a year. I have been supported entirely by my children for 8 months now. I don't know about you, but I never imagined myself not even being able to work enough to earn a living at 41 years old. There are people who have found themselves in this position even younger, and yet people want to condemn many of them as lazy, or worthless, because of those who somehow manage to take advantage of a system that doesn't work right. I used to know a guy who bragged about flunking psychological exams to stay on disability. I know it is wrong, and I have been frustrated by that for years, especially watching people I know need the help fighting to get on the system. For most people, Disability, or SSI are just enough to get by in life, and not an easy living by a long shot. You can never live on your own very well, and if you are not married, that means you are in trouble. It is not a life most people prefer. I hope that somebody will read this, and think twice before condemning somebody just because they do not understand their illness or disability. The pain you cause with your words can cause more damage than all the rejection letters the government has to shell out.
Understand Being Me
It happened about a year ago,
well this part, for the very first time.
I mean, I had been dizzy before
and have even landed on my behind!
But this was so different, and scarier too,
as the weakness overcame me
and I fell to the concrete floor.
I could not move, touch, or see.
I heard panicked words all around
and a great deal of hurried activity,
but I could not utter a sound
or move my arm to even cover me!
It is a frightening feeling to have no control
and that is just what happened to me!
I could only lay on that floor
and worry, "Now what will this mean?"
No control meant no job, that much I knew.
It was followed by fighting the powers that be
to try to cut through all the red tape
to get somebody to understand and help me!
I am still here, feeling alone and afraid
with my family depending on me
and to all who say, "So she passed out?"
I dare you to try it a day and see.
Just to make breakfast for my family
of scrambled eggs and biscuits for three,
leaves me tired, dizzy, undone
and extremely weak in the knees.
The "specialist" asked "how often?" and, "to what degree?"
Well folks, I do not know about you
but it only took me one time on the floor
to know that it is something I do not like to do!
Does this make me a fake, or weak and insane?
I guess it just depends on your point of view
but I ask before you call me these things
for you to spend a week in my shoes!




Comments: 24
Great poem!
There is no way to fake some of those physh exam cause if you lie it shows
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or on the internet without the ads at:
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It is a cheerful novel so even if you don't like the ideas you will enjoy the reading.
I do not have advice or suggestions about what you should or should not do, but I will support you in what you decide.
Keep trying. Do searches on the internet for people with the same problem. Things that are difficult to diagnose often take years and years. I've watched Discovery Health programs about people with serious problems and no one would believe them. Just keep at it. It's frustrating, it makes you feel bad, but you know you're not faking anything.
As you know I have struggled with a chronic neurological disease for quite a few years now. It is a little different for me now because I have all the outward indications of disability ; a wheelchair, a full length brace on my leg, crutches, etc. But in the beginning it was different, my only symptom was vertigo and ringing in my ears and extreme fatigue. I had several other things going on but didn't find out until later that they were part of the disease.
For those who don't know, vertigo is an extreme form of dizziness. The room spins very quickly as if you are sitting in the middle of a child's playground merry-go-round going at warp speed. Mine would last for a few minutes to a few days. It was so bad that of I raised my head or moved at all I would throw up and/or pass out cold. It was the most miserable, horrible thing I have ever experienced. I couldn't get a doctor to believe how severe it was because by the time I got an appointment to see a doctor my symptoms had mostly subsided. Finally I found a doctor who listened and said that He would instruct the nurses that I was to be seen immediately if I came in and needed no appointment. This way he could see it first hand and conduct a test WHILE I was having an episode. It worked and he knew after looking in my eyes and seeing nystagmis (uncontrollable eye movements) and confirming it with a test that it was neurological. He sent me straight to the neurologist from his office.
Back then they thought I had Gullian-Barre Syndrome which is an acute illness that subsides after a few weeks. But lucky me, I had the chronic form called CIDP (Chronic Inflammatory Demyelinateing Polyradiculoneuropathy). A Fancy way of saying my immune system attacks my myelin sheath (the cunductive "gel" that surrounds our nerves without which nerves cannot send messages properly) and the nerves and nerve roots themselves.
To make a long story short, I almost died and was hospitalized for 4 months and in a physical rehab facility for 3. Most of my body is affected in some way and I have been on disabilty since I was 23. But guess what? I was turned down the first time and had to appeal to get my benefits.
Wanna hear the most pathetic part? My benefit is only $531 a month. When I first started to receive it in 1992, it was only $289. Because what you get is based on what you pay in. So if you are unlucky enough to be young as I was (23) when I became disabled or if you worked your whole life for pathetic wages as some people I know, Your benefit is ridiculously low.
If I was not married to an engineer who makes decent money, I would live in abject poverty. I did for a while, with 2 kids, before I met and married John.
I know exactly how you feel. But don't give up, you have to keep trying until someone listens.
In the mean time, Keep a notebook with you and EVERY time you have an episode write it down and include details about what you were doing and what you experienced. Every time you have a related symptom, like fatigue, document it. Whenever there are witnesses have them write down everything from their point of view. After a few weeks take it to the doctor. It might make them listen and help in treatment.
Keep your chin up sweetie. I know it is really hard right now but as you know, this too shall pass. It just never seems it will when you are in the thick of it all. You are a strong woman, you will get through this!
Big hug!!!!
You know I'm pulling for you too. I too never believed I would end up not being fit to work at a young age. The last day I worked was Feb. 13, 2006. I hadn't intended on not going back but that is how it turned out as you well know. By some miracle I am one of the lucky few who didn't get turned down on the first try. I agree, it is so frustrating not being able to work, earn money or even get out of the darn house except for the weekly grocery shopping and I'm bloody lucky if I manage the later!!! I've been so blessed to be surrounded by great family both biological and "adopted" in addition to having one of the few truly awesome men of our generation as my husband. I'll keep praying for you and you know it! I love you Lisa. Always have, always will.
This is probably why I have tried to push you so hard not to give up...go after what you are entitled to. I may not be right, but if I wasn't heavy back then, I don't think I would have been treated that way. It is discrimination and that is what you are fighting. If one has empathy, it is for thin people, as I am not thin people think including my own family think I am fat and lazy. Only when my hubby has had the same ailment do I hear, "Gee I now know what you were going through. I am sorry I didn't understand years ago." Back problems, bronchitis. Hopefully he will get it before he gets fibro...
It is so hard, but I think. We even are hard on ourselves. I used to fight it, exhaust myself and sleep for days. Now I just pace myself so I can have a more normal life. If you don't have a wheelchair, get one for your kitchen. That is what I use. Between the fibro and the bad leg, I can get more done. I sit and unload and reload the dishwasher and often I will chop up vegetables sitting in my recliner. I keep trying to find ways to do things. Before my leg, I tried to use an office chair in the kitchen but fell over a few times with it. The wheelchair is very stable and I can lock it in. I have my silverware in plastic containers on the counter, many things are where I can reach now. Yes, I can stand but it does make it easier and I get more done. Love you Lisa..
I was hoping you had gotten some help by now. It took me 17 years to get help. By the grace of God it came before I had to have brain surgery or I would be dead. I just thank God I am alive now.
time with everything. I will pray for you Lisa that some how there
will be an answer for you and soon. Huggers4U