What should I do?: I don't what to do... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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What should I do?

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I don't what to do about my symptoms at work. I work on machinery at times, but half the time I'm doing other things. I sit a lot. I stand, squat, bend, kneel, etc. Its just that I have jerks movements and I often Have symptoms throughout the day and worry what would happen if I am asked about my disorder.

It's of course embarrassing. I wonder hey is this ever going to subside or is going to get worse? My first and second day I administered 2 medications to hide my symptoms but I walked and thought like a zombie. Then later when I got home it all unleashed.

I go to high its just too much for me. I go too low and it'll come right back. I wake up and think is today going to be a normal day for me? Normal is not normal anymore:(

I wake up instead and ask can it be a day that was before I had this? It's hard with my wife. She sees me everyday with this. I can't walk right, talk right, and I soiled my self the other night during a siezure.

I'm just letting loose here. It isn't always positive and happy with me. I am optimistic and I can pretty much solve any problem except this one. It really worries me when I go to work for 8.5 hours and I dont have an outlet. But I still need to keep paying the bills and provide for the 2 of us because theres no one else to it.

When theres times like this it would be real nice just to have an open ear and just let people say on how crappy this disorder can be

9 Replies
Jazymay profile image
Jazymay

I am listening. I feel for you. I really do. I am in a similar situation. I am concerned about my ability to drive, which is the basis of my job.

I know in th me US it is much harder than here. I know that I have recently had to make a lot of decisions, since my son moved out, about what my priorities are. But this recent development regarding driving threw a spanner in the works.

How can I be responsible for 10 people in our bus if I don't feel up to it. But then if that isn't safe, then my one to one work is equally unsafe.

I am sorry I don't have an answer for you. I really wish i did. You are struggling worse than I am, and right now, it sucks to be me. So I can't imagine how it feels for you.

All I can offer is an ear. Tell me exactly how you feel if it helps. I really hope there is an answer somewhere, but till then, I can listen to you, any time you need.

Please feel free to pm me.

I am thinking of you and sending you a and your wife my love.

in reply toJazymay

Thanks Yes I just need a listening ear. The good old lord provides at the right time at the right moment at the right place in all the right things. But no one including me can say no to that or that I can't/shouldn't feel down when it warrants it you know?

On my days off even before I quit I wouldn't take my meds and those were the times when I had it worse, but again I would continue to work on the turd box they call Cadillac. And the condition of my shop/garage is coming around now since before it had motor and car parts with a bunch of kitty litter (oil and spill absorbent) every where on the floor. Things are good for me still but I'm just down.

Yesterday I was on the shop floor learning how to do Preventive Maintenance on large semi trucks. You guys have way bigger than ours lol. I was too close in proximity to just one of 2 other guys in the night shift. My tics happened next to him and he didn't say anything thank goodness. The other auto repair place were struck back when I had a fit but they were too close. A lot of the time I just want to be alone and not have to worry about if I was going to be stared at or questioned.

Do you ever feel that way when you're around people? You're job is a social worker so what kinds of things do you do and how is driving apart of it? Do you take meds for your FND?

Today I woke up in a better mood but I just would hear other peoples stories like yours. How did all this happen with you? Last year in febuary I had siezures and I didn't understand why. Muscle twitches over my body. Before this I didn't ever need to go to the doctor now I take medication and herbal supplements. When our bodies break down they break down right?

I hear "good on you" we say "Right On dude or man" or simple good for you.

Jazymay profile image
Jazymay in reply to

Well my story is complicated, but arent they all! I will tell you as I have figured things out.

In Oct 18 I was hanging out the washing and my legs quickly got really shaky. When I walked through the house I had to hold on to the walls and I was making a bobbing up and down motion. My son got back from work and we went to the ED where they admitted me to neurology. I couldn't really stand unaided. My hands were a bit shakey too. The Neuro did lots of physical tests on the ward and diagnosed fnd. She ordered an MRI of my spine which just showed damage to my neck vertebra. I worked on walking every day, by myself, because the diagnosis was on the Friday and I didn't get help till the Monday. In that time I improved loads. They sent me home on the Tuesday with 2 weeks of physio twice a day and I got better.

Within a couple of weeks I had relapsed and had to buy crutches to continue to work. I am a support worker for mental health. I go out and support people in the community to take part in things, get what they need etc. I also run a photography group of up to 10 participants, where we go to places to take photos.

I have problems because my supports want to go out and do things, activities that include walking to places. I thought my driving was fine because my legs behaved while driving. But I have had 3 minor incidents in 3 months. 2 were not my fault, but I think my reactions were slow. The latest was my fault where I scraped a parked car.

My concern is that I am responsible for the safety of these people, and need to be a safe driver. I really don't feel safe. If I stop work I have got income protection, so I can manage a minimalist lifestyle. I am starting to think that it maybe the stress of working could be the cause.

Previous to this episode, I had a job in finance 13 years ago that I hated. I started to get migraines, but they got so weird. At one point I was losing consciousness in the ED dept. I would get a hoarse voice too. They looked at my throat with a camera to find a paralysed vocal chord. But that symptom came and went. I was in a lot of pain most of the time and occasionally forgot how to walk half way to bed. In hindsight, after being on this forum, I am pretty sure that was also fnd. These major episodes are more than 10 years apart, but In between them I have had serious mental health issues and fibromyalgia, which could possibly also be fnd. I don't know, but it makes me wonder.

My mental health stopped me from working in 2010, just after I qualified as an enrolled nurse. I really had a breakdown. I only just went back to work 2 years ago after a year of volunteering. I currently work 10 to 20 hours per week.

I am pretty sure, as I go over this, especially like this with you, that working is not an option. Probably selling artwork at markets or something like that is a better way for me to go. But right now I am really struggling emotionally and physically. I just want out, so I can potter in my garden and walk my dog without causing harm to anyone else. I am looking at the quality of my life, rather than keeping up with society. But saying that, I am lucky to have a disability pension and income protection. I know it's not the same everywhere.

in reply toJazymay

Well go figure eh? That all sounds like mine yah. Stress and mental pressure will come straight down on us. I did meantion I had siezures but there was more previously too to mine. Like 3 years ago I would get eye twitches and my right bicep would have muscle spasms. So annoying! I did want to know more but it didn't add up until last year. I would stutter a bit but ive stuttered before so I didn't think much about it.

A few years ago I worked at an independent auto shop and I was worked for 56 actual hours a week with no real benefits. I've been very physically resiliant so I never really worried about insurance. I'm think there's many prerequisites to all of us from the teens to the elderly. Good question would be why us? But then if you look at others we could say why them?

Yah I can see how that can be unsafe. When I got hired at this place I sure as hell am signing up for disability. Its not that I want to jinx it. Instead of touch wood we Americans say knock on wood. I also dont want to use my walker or my cane, but I know If i dont then I walk into walls and fall. Its pretty hard and impossible to not think of other things when I can balance or walk right.

A friend of mine is in Mental Health that does what you. He says its rewarding and I think you might do the same. So good for you (good on). As for a back up Im also thinking of doing things to bring in a living. I'm in the process of business preparation. I'm learning about the mobile auto service market and business. How would that steer away of things? Its not. Its making a different pathway to success rather than earning a paycheck from an employer. I've been wanting to but now my disorder really just gave a kick start.

Have you made any steps to doing any art selling. Ive made my steps so far. I have enough tools and equipment to do the job so right now its about diving real deep in learning about business before I do business. And you know heres an odd back story. My dad was in mental health a school counselor. My mom died of a nuerological disease. I tested negative for that but pretty odd how both are in sync.

Jazymay profile image
Jazymay in reply to

A quick reply before seeing Dr. Yes, i have sold some of my art at narkets before. Its not big money, but every bit helps. And it is a wonderful activity for me to do. It might help my over all wellbeing.

Jazymay profile image
Jazymay in reply toJazymay

Well, I saw my Dr, and she agreed it is safer not to drive if I am concerned. She doesnt want to take my license away, which is a relief. So I have handed my resignation in at work, and as I am a casual, I have stopped work.

My Dr. Will support me in claiming income protection, but she sees it as a short term solution. I, on the other hand, feel like it is long term. I think the work makes the fnd worse. I have been under more and more stress, and unhappy at work for 6 months now. Over that time I got fnd and it is not going away.

I was a bit upset when a colleague phoned to check in with me, and I started to tell her what my supports needed to happen. But she has it under control, and she was very nice. She said that she had utmost respect for my work. That was really nice. She has also had to give up different roles as she also has mental health issues. I feel that she really gets me.

My Dr still uses the Conversion Disorder label. She hadn't heard of fnd. That's very interesting as she says there is generally no follow up except physio. Which I would agree with, except I am normal some of the time, so I haven't lost the use of anything. It doesn't help brain fog and fatigue, nor pains.

So, for now, I am just going to do nothing. Enjoy tidying my garden and keeping it green. Do some artwork and get good at that again. Probably make a spare room into a studio. Take my dog walking again. And, of course, sort out the finances, blahhhhh!

Then see where I am in a few months.

Hope you are getting through your obstacles at work.

Jazymay profile image
Jazymay in reply toJazymay

PS, the Dr I refer to is my psych.

in reply toJazymay

Agree

in reply to

I get you. All of it of what you're saying it sucks that you had to hand in your resignation. When I was put on medical leave I had 6 months to get well. Income protection I should of signed up for yah we have to sign up for that and they take some money out of my paycheck. I didn't this would've happened to me so I didn't sign up, then bam siezures. So I had no work but a reservation to come back with a doctors note saying im ok. But the doctors (multiple times) never gave it to me, so I had to resign. So I feel you!

That's so funny how you get refered to physio and we get refered to psych. People over here in a nut shell say not my department. They say I could get through this and send me on my way. Um.. I analyze, problem solve, and gain insight all the time. So how come you don't want to help this diagnostician to figure out my thoughts? Psych over here prescribe and send me on my way. My only therapy I know of is what I do.

Make sure you take time of no job to sit and relish the freshness of no pressure. I signed up for income protection with this job lol, so now if anything happens ill definitely be protected up to 2 years.

Im posting a memoir you should read it.

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