Working and FND???

[brightnhopeful]

How do you work with FND? I would prefer to work but with FND it's hard to explain to an employer what you barely understand. Also about a diagnosis that is common but uncommon for those who don't have it. There isn't a cure and you can't know what your tomorrow will be.... Pain, no pain, spasms or none, and which body part will be affected. FND isn't a recognized disability in America. So I would love to hear what the rest of your do.

[LEEJUNFAN]

Hi there,

We live in Manchester, UK.

My wife has FND and unfortunately lost her job on health grounds due to FND.

Like you, she asks the same question everyday regards working.

She wants to work so much and has tried Volunteering, but her symptoms vary from hour to hour, so it's so difficult to try and get a balance.

Some people do work with it, which is admirable, but everybody has FND to varying degrees of intensity.

You pose a very interesting, albeit difficult question to answer, and you will get replies here on this forum.

I've put the same question here myself.

Very best of luck and best wishes in all your endeavours.

Regards.

Tony and Kim 👍 👍

[Regaining-control]

Hi brightnhopeful

I was fortunate to be working with the same employer, part time I might add, when my symptoms started developing. Two and a half years later things went bad very quickly and I was diagnosed FND but being a small business I was so lucky that they kept my job open for me. I had four months off and have had to cut my hours back to 15 over three days but it is possible... my bosses and the clients are all understanding when I stutter or shake etc and I am so grateful for that. I hit the jackpot and I wish everyone has this experience but sadly you never know how people will react. I take things easy and we implemented strategies so that the job wasn’t as stressful and I am always honest on my symptoms. I work admin so have the opportunity not to be on my feet a lot and the days I work I don’t do much else. Everyone is different in their symptoms and if things get worse I may have to give up work but we take one week at a time

[Threewhitewesties]

Hi , I had to leave my job, as my condition deteriorated and when I tried to fight the condition it got worse, I hated my self for not being able to work, fortunately I have a great supportive husband and family who know that if I could work I would, my life now is unrecognisable to the person I was, I am at peace, for me I use to look but didn’t see, now I see every thing, my only targets are keep my house clean and dinner on the table each day, i know you probably think shallow, but this keeps me sane, my friends and family feel sad for me but I am alive, I see my children and grandchildren regularly , and I appreciate the world so much more, their has not been a day for the past 4 years that I am not in pain, the fatigue can be overwhelming, and different parts of my body are failing, I now focus on not crashing, I listen to my body, bad days are often but only for my body , my mind is healthy and positive, work was once every thing to me, yes our life style has changed financially, but again we survive, FND may take our bodies but it sure as hell cant take our minds, be strong look through the dark and their is a light, only you as individuals know what your light is, go for it you owe yourself that as living is so precious, we are all here only once, take care and good luck x.

[Hidden]

Well I live in the USA DFW Texas. Im 33. Diesel Mechanic working full time. Its not easy to mentally emotionally physically deal with. But..... Believe it or not a lot of people don't know about my physical health. I never talk about it to them and they never ask. Even though I show tourette like tics and have walking, speech, and shaking problems. Working around machines is that dangerous? Its dangerous to take a shower with this. I don't mean to isolate myself but I do it for safety as well as I get embarrassed.

I did get let go and put on medical leave FMLA to get better but it never worked out. So after I was let go I didn't quit personally working. I applied for another job, as a master mechanic on small vehicles and light pickup trucks. I need to earn a living. I dont have family around so it starve or work. Disability in the USA isn't easy to obtain and some states you need to not be working fora small amount of time before you qualify.

How do I cope if I have my symptoms flare? I either call out sick or show up late like any other problem of work. its all about knowing/being aware of your body unfortunately you never know how your body will react nor people but thats with going into the classroom after you just broke your leg awkward and people have questions, doesn't you need to tell them. 40 hour work week with FND? I lie and tell them yah I have tourettes yah I hurt my back yah my knee got bumped on a car. Theyre just curious and notice the obvious doesn't mean they care.

If you can do your job you can be consistent showing up everyday, then youll most likely have a job even in an office when this guy works on machines.

[brightnhopeful in reply to Hidden]

Thanks for the local-USA- advice. It appears that outside the US it's more options for help/assistance. Working in the office isn't really an option for me since my job title is that I got to homes and see clients. My office doesn't want to really accommodate me in the office or offer me another title/position that doesn't require driving. But I understand the embarrassment, I feel like that a lot in public if my symptoms are acting up.

[Hidden in reply to brightnhopeful]

Its tough about in public, it got to me at first but you get used to it after awhile, welcome to the different people lol. As for working I lost my job last year. How it happened was I had siezures and went to the hospital after I was discharged and had an excuse slip to return to work (dumb move from the dr.). Then after a month I had an accident unrelated to my health. Then, I spent 6 months at home because I was on leave. I went many mental health dr visits and also neurology.

I had to pay for all of it but my insurance took care of it. I was close to losing my house, and a lot was going to be gone. Hopefully you have someone you could live with to not have to worry about bills. Point is...... I had to get a job again to better myself. I went to mechanics because its what I know. Ive thought to do something else, and its always an option, so I will be ready for the change when it comes. To pay for healthcare in the US you need a job. If you dont have insurance youll pay hundreds of dollars. If you can't work you need to apply for disability or live off others. So people like me and others we don't have the privilage to just not work. And if you cant work at one job oh freaking well good thing theres more than one place to work at. Learn your new place tone it down a bit but listen to the silent voice that tells you to get up each day to live, so live if you need to work like I do then work, if not take advantage and chill out

[CRPSplus in reply to Hidden]

I'm aware the sickness/employment culture is different in the U.S. (I'm U.K.), but I do think you need to be more honest with others about your condition. I'm not criticising, far from it, your doing well, but in doing so you are also putting yourself and others in danger. You have self-managed by recognising you need lighter duties and done something about it, which is obviously a move in the right direction, but if you could find at least one person in who you can confide at work I'm sure you'd find it helpful. Standing alone with this condition isn't easy, and you will be the last to be able to judge how it could be affecting your general mental well-being, and keeping secrets biologically changes how you behave in the company of others - again, something you will find difficult to judge for yourself.

Disability isn't easy for anybody anywhere. Sharing with others lightens the load, even if it's only one trusted person, and to have that person as a co-worker could bring tremendous dividends.

[Chingona]

Hi bright and hopeful ,

I initially lost my job because I couldn’t drive., tried hitchhiking to work but eventually had to many seizures at work. It took about a year of doctors appointments for me to get everything under control. With the keto diet, exercise and thc/ cbd oils I was able to manage my life better and I’ve been working at the local newspaper for a year now! My boss is awesome and understanding, I was completely open and honest with him about my health. I’ve actually only once missed an assignment in a year due to a seizure. Although my biggest fear is having a seizure in public, I’ve managed to overcome that and I cover sports, government meetings, community events, law enforcement reports etc. It’s been great! I really struggled with being unemployed ( I’m a single mom with two kids, and rarely get any child support) i completely lost confidence in myself when I got sick and I’m slowly gaining it back! I hope you can find a great boss who can accommodate your needs because I think it makes a huge difference to feel productive and not be home all day feeling frustrated.

[Chingona in reply to Chingona]

I also live in the US, New Mexico

[brightnhopeful in reply to Chingona]

Thanks for the local-USA- advice. It appears that outside the US it's more options for help/assistance. When you lost your job were you able to get any assistance through social security? I tried last year but they said I wouldn't qualify. I would prefer to work, but to get me through the transition of finding another job that I can work..... Without driving being a requirement.....SSI would be helpful to get my bills paid because I'm a single mom too. How did you manage with your children daily without feeling "mommy guilt"? My son is 10 and he helps a lot but I want him to remain 10 not have to rush to 16. Thanks for the post.

[CRPSplus]

It always saddens me to read how disability seems to be treated in the U.S. (I'm U.K.). There is dog-eat-dog, and then there is dog-tearing-at-a-carcass if you get my meaning. Shouldn't be that way, we're all human beings trying to get on with our lives.

My FND lives in me with a room-mate. I also have a severe and advanced diagnosis of CRPS. They are always arguing with each other - nightmare tenants. This makes for a difficult and somewhat (dangerously) unpredictable life. I am one of only a few in the U.K. that carries a medical warning certificate to assist emergency medical intervention, but like most on this forum, I am determined to lead as normal a life as possible.

My condition has deteriorated over the last six years, through most of which I worked full time. A new employer that took over the contract I was working on last October got me out of the door as quickly as possible. I went from secure and well supported employment to redundancy in a breath.

Finding replacement employment hasn't been easy as I am legally obliged to 'declare' my condition.

As I type this I am about to accept a new full-time role with a new employer. I love my work. I help others. I'm a Careers Practitioner and Employability Specialist, and I'm proud to say I have transformed many lives over many years. I'm determined to continue for as long as I possibly can.

Once over the initial apprehension of who will understand & who won't (conditions) I will once again build my reputation and continue to press-on. There will be stumbles along the way (hopefully nothing too embarrassing too soon!), and people will learn to trust my capabilities and expertise. This is compromise from both my colleagues and myself. My conditions have changed me dramatically and I have had to find new ways of communication through compromise and acceptance. Only this allows me to continue, not 'fighting'.

No doubt things will change in the future, and I will need to change with it, but with a strong commitment to self-management, acceptance, and the understanding of others I'm confident I can go a little further a little longer. When I can't I'll have to adapt.

Best of luck brightnhopefull - try to stay just that. Don't 'fight', accept and manipulate your circumstances as best you can. It won't be perfect so don't plan for it to be so. I'm off to work for an employer I am deeply sceptical of, but the opportunity is there so I'll go and make the best of it I can. It'll either work or it won't.

[Cindy391]

Hi all. It is difficult to work with FND. I'm in the UK. I struggle most days to go to work. I struggle to get up in a morning then I get into work and depending who I am working with I struggle. I work in the care environment but they aren't always very caring. The young ones don't care and they are lazy. Just now my father is in hospital. If I go to see him its approximately 40 miles there and 40 home. It doesn't seem much but when you have trouble with your legs and walking then omg. I went to see my dad on Friday last week and I'm still struggling. I'm on my own. I have no one to support me so I have to work. To be honest if I didn't work then I would not be here. I don't like this me, I want the old me back. I hate struggling. I hate trying to pretend I'm okay. I hate my life. I know that doesn't sound good but its how I feel. I would give anything to be the old me