Hi Helen. I’m not sure what you’re angry about but I’m glad you feel 20 years younger.
Because, Because, Because … I find it frustrating to know you are still struggling trying to cope with the ravages of MAV and earning a living IMHO totally unnecessarily because you won’t even try a low dose of a preventative? I could understand it if you’d failed a few and suffered awful side effects. That I could understand. And I think, this feeling is exacerbated by the timing because I’ve just had my Best (almost) a fortnight of feeling virtually me pre-MAV “Old Self” which has made me realise (a) how bad MAV disequalibrium really can be and (b) how really easy walking about and balancing and all such other mundane daily activities are to Mr or Mrs Joe Public and to paraphrase @ander454 recently on another thread ‘if I could pop some preventatives straight into your system without your knowledge I be only too willing to do it PDQ! I just hate to see somebody suffer unnecessarily. That’s how I ended up on here because I’d been undiagnosed for twelve years and suffered myself totally unnecessarily. … with me now? Helen
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I am on my last day today of a part time 18 hr a week job that I spread over 3 days to allow me time to break, cat nap or walk around block. I have managed this for 2 1/2 years since returning from 9 months off whilst getting diagnosed and then given pizotifen. I visit the community so had reasonable adjustments in place so that I only drive up to 20 minutes a time. This was granted through many occupational health visits. Unfortunately, my role has now been deleted and I am unable to, due to my restrictions, move on to the more stressful role, with longer screen time, longer drives and greater chances of having to present to case review panels etc. Having MAV made the whole reassessment process unachievable and this I knew in my heart. So here I now am, after 19 years of my career and achieving a work place degree, about to leave and search for something new. I too am very interested to hear how other MAVers cope. I have a list of what I don’t want to be doing. But what job will let me rest when I need to, go for 2 short walks a day, eat regulary and not be all day on a screen?
- List item
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So sorry to hear that changes in circumstances at work has meant that you’ve had to leave. Something very similar happened to me. An existing employer is far more likely to be able to accommodate such requirements because of both existing laws and previous involvement. Whilst you will obviously be very proactive in trying to find an alternative do you feel you have exhausted all possibility that, in due course, you might not be able to return to your current role when your MAV eventually settles. Have you thought about using additional drug therapy to improve even further or are all possibilities of that now exhausted for you. Helen
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I wish we in the US had any of those benefits and protections. MAV is fair game for being let go. No accommodations whatsoever are required or offered. No disability benefits. No health care. No income. Becoming homeless is a very real possibility.
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I was director of a company with 200+ employees; work included a lot of international travel as well as high pressure board meetings and sales trips.
I worked from home for a while but eventually had to give it up.
I’m now working as a writer.
Screentime is still a bit problematic but I work from home and do the hours I can.
Changing roles has helped me a lot.
The previous job was v stressful when in full health; it was a nightmare trying to do it when I was unwell…
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Impressed! That sucks though!
But yeah, have experienced a very similar transition to you (albeit just 40 odd people)
I’m hoping to go back into the fray at some point though if I’m lucky enough to get to a point of recovery that will facilitate that.
In any case, at least you got there and have stories to tell, now you will have new experiences!
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I am a psychologist, so my work is sedentary and I have a high back chair which stabalizes my head! There are so many jobs one couldn’t do with this damned curse.
Additional drugs lol?
Well on the one occasion I got to see a migraine specialist neurologist she upped my meds dose which meant my symptoms reduced a good bit and my quality of life improved dramatically and eventually, after a further year on the upped dose, the wretched 24/7 dizziness actually stopped (Bliss), and the extreme photophobia receded to the point I could risk going outside when the sun was shining again and I found I had at least half a life back, Propranolol be praised! And said same specialist said “If the Propranolol is working but not enough, add in another drug” which, a further two years on, I haven’t done yet, so I’m not quite the junkie some might believe, but I thought it was worth asking the question. Helen
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Each to his own my friend. I always say do whatever works.
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Absolutely ol’ chum. We have far more in common than to disagree which was further confirmed to me only earlier today when I read your telling words:
Now I really know we’ve suffered similarly. I’m still over reliant on one, and just regularly recall the looks on people’s faces when you say ‘well I would go but they don’t have any high backed chairs there!’. The times I’ve said that. Helen
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Hah, I’m the same with high backed chairs ! I always look out for one!
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