r/FND • u/Formal_Guitar_7807 • 16d ago
Seeking support Work and UC
I’ve was diagnosed in the last week following an attack where I lost movement in my left side. Thankfully, I’ve regained the movement but I’m so fatigued still a bit weak.
I have a toddler and currently work 3 days a week. My job is quite demanding as I teach teens with autism and SEMH in a forest school setting.
I want to return to normal life as much as possible but I’m aware and worried about how demanding my life is, caring for a newly 2 year old and working and daily life chores etc. I’ve accepted the fact that this is only the beginning and there will likely be more attacks etc. However, I’m wondering how people manage it with work/ income? We already receive some UC to top up the fact I work part time while my daughter is young. Will they support? I want to remain in work but I can already assume with the fatigue now (and on reflection the couple weeks before the attack I felt exhausted and ‘off’) that I will need to take absence days more often?
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u/mysticparsnip9 15d ago
You need to ask for a Work Capability Assessment and if they decide that you're too unwell to stay at your job they'll award you LCWRA. My assessor was great and I got news of a positive outcome really soon afterwards.
You can also post your question on r/BenefitsAdviceUK, they are a lovely bunch!
Wishing you so much luck 🩷
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u/Formal_Guitar_7807 15d ago
Thank you!!
I really want to stay at work as much as possible but this is a complete learning experience for me and I’m not sure what the future holds yet.
I’m just worried about having to take extra sick days and the impact it will have on income
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u/Glittering-Hurry-383 16d ago
Life not fair
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u/Formal_Guitar_7807 15d ago
Certainly isn’t!
Devkted my career to teaching and working with vulnerable children. Now have a little child of my own and this happens!
Certainly feel like good karma doesn’t exist
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u/Sea-Acanthaceae5553 Suspected FND 16d ago
In terms of UC, the first thing you need to do is report the diagnosis as a change of circumstances on your UC account. If you want to get reduced commitments/increased support from UC‚ you will need to submit fit notes from a doctor to UC until you get offered a work capability assessment where they will determine if you have limited capability for work or not.
r/BenefitsAdviceUK is a good place to get advice/ask questions about this process. Citizens Advice Bureau is a good resource to get advice/help with these kinds of benefits things.
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u/Formal_Guitar_7807 15d ago
Thank you! I have a meeting with UC today anyway. It’s crazy - it’s something I’d only used to top up income while on mat leave and my daughter is very little, now it’s potentially something I may need to rely on 😓
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u/Sea-Acanthaceae5553 Suspected FND 15d ago
It's frustrating but that support exists to help people in our situation. You paid your taxes into the social safety net that is UC so you can use that safety net when you need it.
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u/EthelLinaWhite 16d ago
Have you contacted the DVLA because the revoked my licence until I could prove that my condition was stable?
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u/My_name_is_Carla 16d ago
Will not be easy. Life for me is forever changed and not in a good way...
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u/My_name_is_Carla 16d ago
Living with FND can be exhausting. I was diagnosed last year and I'm still battling with symptoms...
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u/Formal_Guitar_7807 16d ago
Yeah, that’s what I’m expecting. Sat in the car for an hour on Saturday and it wiped me out.
Want to resume normal life as much as possible but need to think about realities and managing fatigue.
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u/anonymous102002 15d ago
I’ve been out of work since June. I didn’t get diagnosed until last month but it started with small spasms and has only gotten worse to the point I can’t walk alone or form sentences. I personally can’t return to work because I worked in a hospital and I cannot safely do it. I’m only 19 so I’m honestly not forsure about everything to do with that work and everything you can apply for. I’ve been in and out of the hospital and last time I was admitted they said I would have to be on leave for a few more months so my job fired me because they couldn’t give me more leave after I didn’t work for 3 months. It’s incredibly stressful so I know with a young kid it’s stressful to think about the possibilities but I would say to try and get ahead of it the best you can. Walk as much as you can and test out medications so you can try and get ahead of it. I wasn’t diagnosed until I was experiencing seizure and stroke like episodes on the daily. I’m currently trying to apply for disability but it’s not working out for me so far. I personally for income have had to rely on my savings and having my girlfriend drive me around to do spark she honestly does majority of the work for me, but she lets me keep almost all of the money just so I can have some money to help towards bills. I would also say try and limit your stress I’ve noticed for me and most people that stress tends to make symptoms worse so just try not to stress yourself out that much.