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Work

As you all know, holding a job down whilst suffering with MAV can be a nightmare. I’m a psychologist so my work is sedentary and I can ‘cover’ my woes usually, but I wonder how other people get on if their work involves movement or presentations.
And since anxiety is likely to accompany MAV (and is a known symptom thereof), I wonder how you all cope with life.
My main problems are ataxia, visual auras, disequilibrium, derealisation… so not many jobs could easily be done with those things going on.
So what do you all do for a living whilst tolerating this awful disease?

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I hold down a job where i need to meet a lot of people and hold intelligent conversations. Holding an intelligent conversation while the ground is shifting under you is not for the “faint” of heart. I also work on the computer for long hours. It is a challenge no doubt helped by my trusted pair of blue light blockers. Sometimes i like the distraction that work brings. On really bad days i do what i can and make peace with it (In the eyes of my boss that will be a sloppy employee). On my good days i try to get most of my work done. Sometimes i work over weekends as i am not productive like a regular employee over weekdays(you cannot do this i suppose). Overall keeping the job is my success criteria, i don’t worry about accolades and promotions like mere mortals do !

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Said the guy who just got his long hoped for job! Too modest Vigs.

I own my own consulting firm. I work from home whatever hours MAV gives me. I do a lot of public presentation work. Some days, I’d rather be trying to climb Everest. I do a lot more proofreading of my own work than I used to. And I hand a lot of work off to subs.

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I haven’t had a job for four years. The last job was one of the things that triggered my worst MAV episodes - long commute, stress, fatigue, etc. I have since been retired and am now a volunteer archivist. I was recently offered some part-time admin work from the place where I volunteer, so I’m considering taking it. At least they already know that I’m sometimes too ill to come in and other times could turn up and then become unwell. I try to get the harder things done when I am well. There is a nice person who goes and gets me lunch on the really bad days when I can’t stagger out to the shops.

I can’t imagine how people manage full-time work with MAV. I really have to pace myself, even with this slower lifestyle.

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Luckily I don’t have to work. I couldn’t have worked when I had chronic 25/7 vertigo. I guess Episodic MAV Caused me to quit the last job I had because due to office closures I had to move offices and knew I would never cope with the additional driving requirements and public transport was not available. Working with MAV must be problematic. I cannot imagine anybody recovering whilst still exposing themselves to so many triggers but it depends on severity of condition I suppose. That’s very variable.

Not really an answer to your question Ant but I think the very best way of coping with both MAV and its related anxiety is not to try to struggle on with it but to try to get rid if it! Change whatever needs to be changed, with lifestyle, diet etc to minimise the condition, AND take medication to try to control it as much as possible. Why struggle? There is no reward for struggling patiently year after year. It’s just exhausting. If one can reduce the MAV`s influence over one’s life by controlling the majoruty if symptoms, any MAV related anxiety will just fall away. Helen

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Hi
For the last 4 years ive spent months on sick leave, being taken home by every member on our office floor plate had speciail leave, disability adjustment leave and used my own annual leave. Ive been on sick leave now the past 2 weeks until i recover from this recent relapse. Plate spinning is an understatement
Jo

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You are of course perfectly right☺

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Well said, Helen.

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Hi Ant,
Yes, indeed it is difficult some days impossible
Im a Personal trainer in a gym environment so, as you can imagine it is extremely hard. I have MS also, when diagnosed with that at age 18 I started taking my health seriously and started getting fit and eating a healthy diet which got me into PTing and nutrition. MAV has also being with me since I was 18 and its always been difficult working even back then when I was at working full time in a sales job still very difficult.

Im currently taking a break from work and have been wondering what I can do that isn’t so physically demanding? Im back working out but Im not sure I could PT someone and have them jumping around infront of my face at this moment! Still I am having better days so maybe one day it will be more tolerable for me. :crossed_fingers:

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Working full time is a marathon every single day. At least in the US it’s almost impossible to get disability. I have no safety net whatsoever. So I work.

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I’ve had to remove computer use from my work life to make things tolerable, and even then I’m only on a part time basis currently in a car shop. I lost a career I’ve been at for 7 years, and am having to move back home because I cant afford having a house on a part time pay basis. But I’m 29, so thankfully i guess I have time to start again.

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This!!! Exactly true. I am a scientific professional that works between several labs, and various sensitive equipment, as well as nasty chemicals. I have struggled so, so much with this. Add on an hour commute each way. My Dr’s tell me to take more meds and push through. Ha. That’s why I have to hold the walls to walk sometimes! The longest I’ve been off work was 2wks, and that was last Spring. My coworkers are men, and no offense intended to men, but they tend to think I’m a hypochondriac in menopause. Financially I am unable to quit at this time unless I find something else lucrative to do that I could perhaps continue doing into retirement. And I haven’t figured out what that would be!!! I’ve thought about becoming an instructor, as I love teaching and mentoring young people, but with the brain fog and dizziness standing, I don’t think that will work. I’m really trying to figure out something I can do from home. If I can last 3-4 more yrs here, I can go out early with nice retirement.

It does bite that here in US you have to basically quit your job for several months before you can even apply for permanent disability (and then potentially wait years to get approved). And getting it for migraine would be hard, but my neck might qualify…

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Don’t think I could recover or get back to work without medication, so that was the first thing I realized. Second was to ease into certain types of work that I felt I could do. Started picking up odd jobs through Freelancer/UpWork so I could work remotely and start to build confidence again. At present I’m still part time, hoping in a few months to be close to full time, but still working remotely from home.

Nowadays I’d actually rather be moving around outside than staring at computer screen.

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Forgot to mention- it is because of the financial need to keep working, that I’ve had issues with trialling preventative meds. In order to get to higher therapeutic doses, it seems I must endure side effects that hamper my ability to commute and work. It’s also the reason I regularly take clonazepam at a low dose. It has allowed me to keep working, with no side effects. It is, however, a very addictive drug and can be extremely difficult to stop. I keep my dose at the lowest amount to avoid this. Not recommending this, just sharing that sometimes we do what we have to survive.

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I’ve worked full time since this started 5 1/2 years ago. It hasn’t always been easy, in fact it’s been downright difficult at times. I work in an office and the overhead lights kill me, as does staring at a computer screen.

Things have gradually gotten better as my situation has improved. At first all I could do was work then go home and go to sleep for the rest of the day. Now I can work a full day, go to the gym in the evening and still have some down time before bed.

Some days are better than others, but medication has helped me improve to the point where I am 70-80% on a good day and that’s enough to get me through the day. As others have said, work has often times been a welcome distraction from this whole ordeal

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This is pretty close to where I’m at. I still scaled back some to allow for the day or so a week (in daily cumulative hours) that I just can’t work. Because of MAV and other health issues I’ve averaged 86 doctors appointments a year for three years. If I wasn’t working for myself, I’d be unemployable.

@napagirl - hang in there. I feel you. I wish I was much closer to voluntary retirement. At 46 and self employed, it’s on me to just keep pushing forward. MAV is an extreme sport.

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Yep! Between phys therapy, rheumatology, endocrinology, neurology, orthopedics- no wonder my coworkers think I’m a hypochondriac!!:joy::joy:

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I explained to a new PT just yesterday that I am not drug seeking (I have plenty); I’m not attention seeking (got a social life, too) and I’m no hypochondriac. I’m just trying to function with less pain, less discomfort and a better quality of life while still being a productive member of society the extent I can. I still have much to contribute.

Though it is frustrating to work much harder than people around me and still lose ground.

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Hats off to you all working with MAV. Reading you I thought, wow, we MAV people are anything but definitely not “over sensitive,” “hypochondriac”and “self-indulgent.” Quite the contrary actually. The stories you write are about survival and strength.
I work a small part-time job. I love the distraction it gives and really want to keep doing it, not just for the finances. But it’s so hard to keep going some days, and also to accept who I’ve become, I had so many plans and dreams for my future. A huge lesson in letting go and acceptance. I hope that one day I’ll be able to work more hours, be more independent financially, and build a career I like.

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I also work full time… part of my hardest / darkest days were when I felt I couldn’t do my job “well”. I realized I have let my career define me to a degree. I have a team of people who depend on me to keep the company going in the right direction and when I couldn’t do the hour and half commute or logically perform many tasks… they came to my rescue! I have been surrounded in support by my “bonus family” as I call them. Hardest thing for me has been the commute, which is about 80 miles each way and difficult logical / critical thinking that I must do. Some days are better than others but without my career, I would not surely have recovered as well as I have. I need the pressure to keep me motivating!

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