Hi all I have FA and have had a couple off falls hitting my head quite hard (luckily not done any lasting damage ) ,
I retrained and came off ESA around 5 years ago as thought the benefit of being around people would be great for my mental health, but with Covid I've been stuck working at home nearly two years alone (great)
my Physical health has took a nose dive and trips and falls are stupidly more regular,
I'm now thinking I made a huge mistake going back into full time employment as I'm not any financially better off and physically its starting to really affect me.
With my Ataxia I know I'm only going to get worse as time passes!
It would be fantastic if some off you would give some input on what you do working or not ?
Thankyou Lee Morris
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LeeMorris
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i can't really help, but first i wanted to say i'm sorry you're going through this. my ataxia developed after i was already disabled and unable to work due to spinal issues (pain, balance trouble, numb limbs... basically ms without the label), but i know what it's like to try to get back to work and be physically unable. i was also in my 20's, so there was the added pain of feeling like i should be able to do more than i could.
it wasn't fun. at some point, once the incontinence issues set in, i had to just face that my body couldn't work properly, couldn't do what it was designed to do. there were a lot of tears, but i added things i needed, like incontinence pants, a cane (then a rollator), and learned to listen to my body. i was lucky to be able to live with my parents as it took some time to receive benefits.
is money part of the issue? are you able to apply for benefits while perhaps taking reduced hours?
Money would be an issue as I retrained in AAT ( Accountancy ) If I reduce my hours I would earn over the limit to receive help but with the cost of living would push myself into poverty!
I did consider reduced hours but it would cause a whole new set off issues.
i say benefits give you one fourth of a living wage😠. for people who are able to work fewer hours, unless you work in a minimum wage job, you bring in 'too much' money. it's exasperating. i'm sorry i couldn't help more.
Hi Lee,im 70 next month so a lot older than you i was retired before ataxia struck,i was really enjoying retirement i live alone and only go out if my kids can take me if i were you id give up work.i understand it would be hard in many ways but with a positive mindset you will get used to it not sure about finances as i get a pension.whatever you decide i wish you luc.take care.
This is along my mindset, of I only have a short time left doing stuff independently and I don't want to waste years sat at my desk, already finding I only feel comfortable going out with family and friends on hand to help and avoid going to certain places,
A difficult one that takes a lot of careful thought.
What type of job you do and is it the job that’s causing the falls.
Does it affect you finically if yes are you claiming PIP and other benefits you maybe be able to claim.
A job is not just about money you have something to keep you occupied you have people around you and something to keep you occupied you have a purpose for getting up in the morning.
The worst thing you can do is leave and sit on your own watching TV all day so if you do leave your job try and make sure you have a hobby or something that you enjoy doing. For me the worst thing you can do is nothing.
You mentioned you have spent a lot of time at home and your physical health has got worse, maybe linked.
Try not to think too far into the future as far as your ataxia goes as we can never judge what we will be like tomorrow let alone in years to come.
I work iñ finance and Accounting, I think not being as active has caused my Ataxia to worsen , your right about working was about more than money , if I do take the route off not working I know there's plenty off voluntary roles Available and I have recently taken up Rowing which will save sitting in front the TV !
a few years after i got sick, a relative told me, 'if i didn't have to work, i'd never set my alarm clock.' he's also the one who said, 'you're so lucky you don't have to work.' seriously???🤬🤬 work is about so much more than money. you face a difficult question.🤗
I haven't been on here much this year, it was a complicated and emotional year.
Re. Your I can appreciate your reasoning.I have acquired atxia, not officially diagnosed, since 2009. At the time my neurosurgeon stressed the importance of work and routine in order to retain cognitive functions.
I went back to work part-time around 2013. I was a qualified quantity surveyor and had prior to the atxia, just qualified as a woodwork teacher. I came to my own conclusion that I would need to think about a different career.
I am in Ireland and receive an disability related payment which also allows me to work part-time and I am more than happy with that as I have 4 & 6 yr old kids.
The working from has been EXTREMELY hard, I really struggle in noisy environments, and with kids not at school, that's what it was.
I have a proper home office now so it is somewhat easier.
I don't get paid a lot, its not about that. I have no intention to go full-time. If you don't have to, don't.
Hi Lee, I am in the process of further tests but have been told I have Ataxia. I too am qualified in AAT. I have been self-employed for 20 years running my own accounts practice. Covid certainly has not helped me. I don't mind working from home as I have done since 2000, but having 4 adults at home last year and most of this year has been hard on me. I like working when no one is home.
I have so many questions regarding Ataxia but will be seeing my consultant again on the 5th of November, hoping he will tell me different. Probably wishful thinking. My work is the biggest stress and has been for many years. Especially between now and January. I am going to downsize some of my clients and see how that goes. I have a couple of hobbies and I am happy to do them and look after the house without work but my husband thinks I need to keep my brain working. It's a difficult decision. Do what is best for you.
Hi paper I started a book keeping practice this year, probably over done it for a while, I've decided to keep up with work for a few more years, as you can appreciate to get AAT qualified takes alot of commitment I don't want to just throw that away
I remember studying it. I did start ACCA but stopped to have children. Haven't needed it so didn't go back to it. My only tip with your own practice is only to work for the ones that appreciate your work and that you enjoy doing. I have far too many clients who take my service for granted and don't like paying me and least of all a tax bill. Keep up the good work as an Accountant I appreciate your worth!
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falling down and getting up
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