I am having a tough time keeping my focus in my day job, remembering things and even socializing with the VM thingy all over me. Wanted to see if there are folks who still manage their day job and still plow through the day. Working on the computer is alright with me within limits. It is the vague uncomfortable feeling of constant motion, imbalance while walking which gets me down. It is hard to laugh and be jovial with your colleagues when you have this thing going on. I try to take off early so i can come back home and work a little bit as i feel safer at home. Also the constant brain fog i went from the guy who remembered everything to the guy who has to think which year it is currently. So any tips on how you get through the day appreciated. How you guys handle colleagues, boss etc Do you take walks once in a while to feel better ?. I am constantly living in fear that one day i might not be able to keep doing what i do. Thoughts , comments ?
Hey vignesh. I too have a day job and i totally understand how you feel. I mostly work on the computer and it has been fine for me unlike at home which gives me little bit of nasea. I get imbalance through out the day and sometimes talking to colleagues but i brush it off. I just focus on the main task which is to work and leave. When i’m focused i forget that i have this illness and i try to multitask much as possible. All of my co workers know that im not 100% in my department but they dont need to know the full details of my condition because they will never truly understand so i try not to bring it up or someone asks me how i am doing i just say im fine even though im not. The way i handle with people at work is i pretend im not ill. This helps them not to be edgy around you or walking on a eggshell. I joke around, i laugh, and i forcefully do it not to be the odd one out of the group. Since i am sitting on a chair all day, i pretend im getting something or i use the restroom just to stretch my legs and not to over do things. I take occasional smoke breaks too. I understand the feeling of how you can keep going on like this. I get anxious at work sometimes too if symptoms are worse and i keeping asking myself what if i have a full blown attack here or what if this or what if that but nothing happens. So anxiety is all in my head. Whenever i have a bad day, i just tell myself at least i get to go home and do what enjoy and tomorrow will be a better day. Sometimes it may not be but positive thinking is key for me.
Well you know my history. I lost the job because of the beast. But I’m getting better and will be back in the job market one day soon.
I feel the same way. I try to pray and be positive that maybe one day i will feel better again, you know i tried so many medicines and treatments and the heal is not garantee. So, i have two little girls and i know i have to keep going, but it´s difficult sometimes i just want to disapear some days. Nobody knows what is this beast.
GetBetter, I work full time and sure wish I didn’t have to. I live in fear of having a vertigo attack while on the job. Having to share an office with someone and having people come in and out to ask questions all day long just makes it worst. I share some of your symptoms such as constant motion, and imbalance and then I try to laugh and be friendly and pretend everything is okay. Right now I’m pretty much in the same position you are, and hoping things get better.
Are you on any medication that helps? Is there someone at your job that you can talk with when things get really bad? I’m trying to keep this disease to myself while on the job which isn’t helping. I’d probably be better off if I opened up to someone but I’m a private person and tend to keep things to myself.
I quit my job thinking that stress at work(wearing too many hats) was causing my symptoms
@young_lee wow you multitask with VM. You rock ! Hey what you doing smoking with hydrops and all (Kidding) Thanks for sharing your experience. I don’t let anyone know my condition and i use the term “migraine” when i am at my worse and people get it.
@turnitaround you will make a comeback in the job market. It is awful to see good people losing jobs cos of this beast.
@Lbmdf Managing two little girls is the same as having two day jobs…hats off to you
@bookworm: Amitriptyline helps to some extent. Trialing meds is a problem as you have to show upto work everyday. You can always say you have a migraine problem to a trusted friend at work and then explain your migraines have dizziness along with it. People get migraines but not VM !
@gmathew: Initially i thought stress was causing everything ! I was wrong there are other things at play. Hope you get better and start working again.
Thanks everyone for chiming in
@young_lee You rock ! Hey what you doing smoking with hydrops and all (Kidding)
i know smoking is bad for hydrops but it relieves stress for me lol.
I am struggling to keep my job. I am a researcher and also use a computer. I wear down very quickly. The fear of losing my job is very real. My performance has swapped from superstar to cellar dweller. The constant motion is impossible to get through most days. I am finding my job literally impossible to hang on to. Even now on a great day composition of this message is taking forever.
Good luck, do your best.
@mk1 hey hang in there…i can understand being a researcher how much this condition can be crippling…if you find the right meds your symptoms should become manageable to a certain degree. Don’t lose heart and keep trailing meds until you can find the right one. Are you taking anything currently ? I have seen folks who after 3 years found the right med and got their life back.
Also a favor if you don’t mind…since you have access to research publications can you look and see online if there are latest papers and findings on vestibular migraine or MAV and share it in this forum.
I’ve been working for 4 years non-stop with this. In retrospect I really should have taken a month or two disability when it first started (hindsight is 20/20 isn’t it?)
I work with only one screen and use a screen darkener. There are times when I’m talking to co-workers and I’ll have a big pulse of dizziness. Usually it’ll pass, if it doesn’t I’ll occasionally just walk away abruptly. I’m sure my co-workers think it’s odd, but I’m a weird dude as it is, so I’m sure they just think it’s me being me
I have dual screens and no screen darkener. Let me try this.
I pretend i just remembered something and walk away !
Thanks for sharing your experience.
Wow very similar. I was working as an assistant property manager in NYC when coming down with MAV and was under lot’s of stress. Medication helped but was laid off shortly after giving them a note from my neurologist. Haven’t been working for a year and trying to get better. The last neurologist I saw recommended cognitive behavioral therapy and having a vestibular psych evaluation this Monday.
Ron_Denning, I think you are getting the run arround. Good luck either way.
I was able to cut back from full time 50 hour+ weeks plus 4 per day commuting to working f/t from home, then less than f/t from home. i was very clear with my employer from the outset about what i had (once it was diagnosed). in the UK i guess we have better employment protections than in the US. i was also fortunate in having been with the same company for 17 years, so they knew i wasn’t just making it up.
the hardest thing though was that i lost confidence in myself to make the right decisions, which is tough when you have 40+ people working for you and looking for leadership. cutting back on work definitely helped me to improve - i think i would have just stayed in a cycle of trying and crashing if i had tried to stay full time, but i couldn’t even try. there was no way i could even get to work for about 3 months, i couldn’t walk to the station. so i had to change what i was doing. i guess i was lucky in that i was able to make the change.
i feel like i will be able to work properly again in the future (When???) but all i need to do is stay afloat for now and try to let myself recover from this train wreck…!
@gidlabu…wow. Thanks for candidly sharing your experience. The recent weather changes have made me take 10 steps back. It is difficult to sign up for stuff at work when you have an unpredictable condition. US might allow one to go on short term disability but I don’t see the point of staying home and dizzy. You did the right thing cutting back, I need to figure out a way to cut back.
@gidlabu, @getbetter, Here in the US I went on short-term disability, at first part days. Note: This is a self-pay disability policy there isn’t any public policy like this. After my vision was severely affected, vomiting was impossible to control, I reached the point where I could not safely transfer from a wheelchair to a toilet, no focus, etc, etc. I did stay home permanently.
My company is what is known as a Prime Contractor to our federal government so we tend to have pretty good employment support. Even though my short-term disability ran out and my long-term was initially denied (reversed many months later on appeal), I still had a job. At our company after one year our HR does terminate people. I was lucky and fell through the cracks.
After some improvement with treatment – specifically effexor – I managed to return to work “up to half-time.”
Two months later my current breakthrough started. I managed 10 hrs last week and 8 the prior week. Quite frankly my level of performance is abyssmal. If I cannot get this breakthrough under control soon, I will likely be terminated. In the US people in my field tend to work very long hours. I have rarely worked as few as 60 hrs/wk. I love my work. I also was a top performer.
In the US getting a new job that will let me vary 0-20 hrs per week will very literally be impossible. Also, most doctors in our neck of the woods will not fill out disability paperwork so at some point LTD will disappear.
I admit it gets me down once in a while (only once in a while – I’m typically a can do personality) that all I want is to work full-time and that the LTD insurance I have been paying for will likely disappear. I just need help until we find a regimen that keeps me mostly at work.
Not to be political but I used to not want our government meddling with our healthcare system. With my new glasses (fl-41pun intended) our system seems to allow doctors, employers and insurance companies alike to deviate from common human decency. I am embarrassed and scared.
@gidlabu, I feel for you. Chronic forms of VM are life destroying. Just keep a positive attitude, fight melancholy with fervor. For me listening to very soft music with noise canceling headphones helps. I’m focusing well at this moment, who knows in an hour? Take those good moments to find a hobby you can tolerate. Enjoy every moment you can steal from this disease. Laugh at it, mock it. Laugh at your situation when you speak gobble-gook. Try to view it with mirth when you can.
Well said…clap clap…words to live by…@mk1 you will beat this beast and work full time…inspiration can be infectious…You managed to put some into my tired spirit