Back in January I started to lose my legs. I walked with a limp and it progressed. At the time I worked as a diesel tech working heavy diesel trucks. After 4 to 5 months on the job, someone finally called it in to HR Human Resources. In the USA its the department that has the final say and keeps the company intact.
I had to go on leave to prove I could work, then came back, then a week later they got rid of me aagain on leave. After a month or so I was let go because the Doctor who saw me said he doesn't think I should get in and out of vehicles, nor drive them. I don't blame him or them. It's just life. I was hurt that I was let go. I had to say goodbye to my old life walking and fixing and repairing vehicles.
Now I have to use a wheelchair for life. But again im not sad. Ieither rise above it or sink below. So I rise and still live everyday doing what I do which is work on things and even on my neighbors vehicles.
My nervousness is that I just went through my first phone call with a prospective employer. An independent business. An auto shop being a customer service person. I didn't say I use a wheelchair. I don't know how he'll react. But I have to find out. I have to learn what their questions will be. I have to see how they'll scan me.
What my question is, is there anyone who had to give up doing what they enjoyed doing and still got back into a life they want for themselves? I can't see myself staying at home wasting away. I can't see myself settling for a job that I don't want to do all because I use a wheelchair.
I know exactly what you mean. I am a Veterinary nurse who can’t be one now due to mobility and having a head that floats away making concentration difficult. I’m desperate to get my business up and running where I help people and businesses provide the perfect environment for cats but at the moment concentrating is just difficult I’m just taking baby steps. Just be open and focus on what you can do not what you can’t do. You clearly have the technical knowledge which will really help with customer service the worse thing is when you call up for advice and you have someone on the end of phone reading from prompts you will actually know as you have that practical knowledge so focus on that. Sell your strengths don’t use words like I can’t do this or that say what you can do.
Your head floats and not able to concentrate? Me, when I mentally work my symptoms don't really go away rather just reduce down to a tolerable level if any. At times I forget I have a disorder. I volunteer at an animal shelter at times and it's been helping me feel more comfortable being in a chair and talking to people.
Selling myself isn't difficult and what I can/can't do. I've taken pics of me under a car working with my chair in the background, and also I put in stair posts outside. That'll prove im not a "I can't" person.....Oh no if anything you (they) would find even though I can't reach above 6 feet doesn't mean I can't do anything less than 6 feet. Thats my attitude.
Really I just am going through losing the nervousness. How do feel/think about the "head floating" and focus? I've done a self-made test. I pick 2 points and count to 100 back and forth...... If you can do that and your symptoms or focus get better than hey we're onto something. It's a big reason why I just have to get back into it.... Not work on vehicles but be that face of the business...
Glad to hear your not a cant person had a sneaky suspicion you wouldn’t be.
Ooo I’ll try what you suggested, my floaty head is lightheadedness but my eyes can suddenly move fast too it’s a bit odd but when trying to read I have to really focus as everything becomes blurred and when I have lightheadedness all my coordination goes.
I had to stop being a government contractor almost 5 years ago. I now work for myself online from home. I had to be creative bc I'm still fighting social security for pay, bc as long as they think you can earn $800 a month, they dont consider you fully disabled.
With you just being in a wheelchair I believe that have to be accommodating. I do not believe they are able to discriminate just for that alone, unless the job requires something you cannot physically do.
I love your mentality tho. Bc once I developed an "it is what it is" attitude, my enjoying my life got so much better.
Oh I know right? About that quote? I didn't ever say or show "I gave up". It's just life and nature I remember thinking of a quote and question by myself....."God why am I messed up? Why can't I be normal?" "Wait you are normal...... Everyone's messed up" Lol that little deal just had me really realize that some things are obvious and some you can't see right there. But if you take a step back at who ever, learn more about them, yah you'll start seeing how they're messed up too.
Exactly. And once we get there, everything else is figure-out-able. I do understand that anxiety tho. I used to be scared to be left alone during the day, going out in public etc.
Now, most forget I'm ill, until my speech goes out, I'm using my walker/cane, or seizing with ticks...
We can enjoy our lives. Just have to make accommodations.
I have tics, movements, my speech goes out. When I speak and it goes, I stop excuse myself and mentally pick up the pieces by just saying the words slowly. I have Are you in your working years? Im 33 male in the USA.
ok i know it's hard but it's harder to try and find someone like me/you to share things with. Since you work from home is it better for you? What I mean, is that by me going out and experiencing the world and things helps my symptoms. It also helps me to understand how people see me.
So do you have some sort of help at home maybe to do the same? Not just be at home and work? Is there a social life?
I have an active social life. But working for myself allows me to control the triggers. I can go out and have fun bc I didnt use all my spoons dealing with the world and being overwhelmed. When I tried working I could only get to 2-3 hrs before seizing. and needed every other day off to sleep.
Being able to lessen my triggers have allowed me a somewhat normal life.
Like today I did little work and slept most of the day. If I disregarded my signal to rest and had to go to work, I'd have a seizure cycle that would send me to the hospital.
It's about learning what's best for you bc we all experience this differently.
Over exertion is a trigger for me. So is over stimulation.
yes me too on over exertion if I work real hard physically I have siezures, tics, etc. yes I believe just doing what I do and learning my pace is what keeps me at a tolerable level.
I really felt alone being a young male in the USA with a condition thats known and theres no resources. Please feel free to chat with me
Hi matt sorry to here about how FAD has stopped you from doing the job you enjoyed. By the sounds of it, you are a man with a positive attitude, a big plus, you can always move forward ( even in a wheelchair) with that.
I have FAD and have found my left leg to be much weaker than my right. I to could end up with wheels. In the uk they will attempt to strengthen your limbs with neuro physiotherapy at specialist centres. Not sure what their success rate is like, but hope to go there.
Too much about me, sorry, can I just wish you luck with your interview and your future. I know you will make it work
It is nerve racking to think but since I don't want that to happen and relying on the lord, its just really time. Im replying to all posts and feel like the people like you who understand what people with disabilities go through that they feel the things I feel and see.
I just want to share with you shortly how I ended up with one. Last year i've had these episodes. They happened in the middle of night as I would go to the bathroom to pee.
The left or right foot dropped and I I couldn't move it. I had a funny looking gait. After a few days at work of walking and standing all day practically my brain would go back to normal. One time I woke and couldn't stand for 4 days. I woke up and just stared at my toe for 3 hours and once it twitched I spent the next 3 days recovering.
This time it went from the left foot to right foot and slowly went up. My legs felt like weights. My gait went to the side. And as time went on my "commands" of moving my legs faded. If this is like you, then I say your life is your own. I don't think being in a wheelchair is bad, instead good. I get the privilage of wowing people. I get the opportunity to show people how much spirit I have and why it'd be a great thing for me to be hired there.
Picture it. A man you see roll up to you at an auto shop and basically welcoming you in and keeping you interested in your repair and to come back when you need things done.
It to me would be "wow this guy a few months ago was walking funny working on diesel rigs and now he's back and working again in the same field of study?" oh yah big money
I feel for you and I wish you luck on your interview. I am not at the level of where I rise above it. This week is the 1 year anniversary of when my first FND stroke attack occurred and I am still lost. I’m in therapy and it helps but still sad. I am proud of you for being strong and going for yours. People like you inspire the rest of us.
Well that means I give produce to my life then. What kind of therapy are you in? If its talk therapy I have done that and it was for nearly a year. Did it help? It helped in ways people may feel different about but I have my own perception of that. If it's physical I have experience in that too. Sad, i'm very sure. I believe it I've been there. How does your therapy help?
And see, the reason why some rise and some fall is because they either are victims or survivors. From your reply it sounds like you have some down feelings?
Those feelings I still feel and thats why they call it the "ups and downs" But maybe you can share of why you're sad or depressed? "I just want my life back" I ask those who ask that question.... "how you come you aren't looking ahead?" "Are you able to focus and hold onto the things you have?"
Been off the sites for ages but have you had your interview yet? If not all the best I hope they are amazed at your positive attitude and resourcefulness...
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So fed up with my FND 
I’m done but in a good way
Daughter just diagnosed with Fnd
A little politeness please?
I'm lonely and scared
