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I need some advice a bit lost

Hello, I was diagnosed with Ms around 7 years ago give or take and thankfully it hasn’t been aggressive and I’ve been able to recover from current relapses with minor issues left behind like loss of feeling in fingers etc. Ive taken a bad relapse and currently been off work for two weeks and it doesn’t look like I’ll be back soon so I’ve started looking for help with pip and universal credit as I have an 8 month old daughter and I need to pay my bills and keep a roof over our head. My vision has went more blurred, loosing strength in my legs and arms, lost the feeling in my face mouth neck tongue. I take gabapentin and amnitriptyline for pain relief and currently have been on methylprednisolone for 8 days, which didn’t work just made things worse and I’m currently on dexamethasone for two weeks. My hospitals here in Northern Ireland aren’t helpful when I have issues as the only hospital that deals with my condition is 55.miles away so I had to travel this weekend to seek help in their a and e to change medications and push towards getting on tacfidera which isn’t happening until next month as my Ms nurse is on annual leave. I work as a chef and have worked hard for years to get to where I am in the industry and now with loosing the feeling in my hands and legs, and my taste has basically gone, my family have told me it’s time to step down as I’m struggling to cope with normal life and work. It’s a hard pill to swallow to give everything I’ve worked for to some disease but as the years since diagnosed have passed things are getting harder to manage. I will be contacting the Royal Victoria hospital Belfast tomorrow to try and speed up the change over to new medication as there has to be a Ms nurse covering my current nurse. Hopefully someone here will be able to point me in the right direction for advice on how I can manage to live while all of these changes are happening because the past few weeks have been a bit of a struggle with money, a lot of cuts have been made to say the least thanks

hi

i don’t know the system in northern ireland but if you have similar advice agencies such as welfare rights, citizen’s advice bureau or DIALS (disability advice line), then ask them for help.

the PIP fiasco is a minefield. www.benefits and work have a lots of info which should help.

there is a fee of £20 to join but their help is worth far more.

also in the uk we have Access to work who aim to keep you in your job and helping your employers to understand what help you need, provide taxis to work etc.

hope there is something here that you can access.

carole x

My citizen advice is very good and helped me with Dla before pip took over unfortunately I was denied pip as I heard a lot of people were and just gave up. Unfortunately I have no choice but to try again as I’ve already reduced my working week to a few days a week. I am getting ssp but that doesn’t cover half of my living costs per week. Family has been very good to me the past few weeks making sure that we have everything we need. I’ll keep an update on the progress of the situation in case anyone else happens to fall into the same position as myself

Hi Neil

What a bloody shame. MS is a sneaky beast. Lulls you into a false sense of security, then BAM! wallops you with a nasty relapse.

So I take it you’ve not been on disease modifying drugs up to now? It’s a bit like slamming the stable door after the nag has bolted, but it’s a good thing to get on Tecfidera to prevent further relapses from hell. I hope you have a decent bit of remission very soon.

As far as benefits goes, as far as I know there are a few differences in NI to the main U.K. benefits. I’m not sure why or what the rationale is, but I just have a vague memory that there’s differences.

Check out Benefits - Citizens Advice that should give you an overview. But, the best thing to do is get help from your local CAB, they’ll be able to help out hopefully with making a claim for ESA (Employment and Support Allowance) / Universal Credit and PIP. You could also check out https://www.benefitsandwork.co.uk/ As Carole said, they charge for membership, but their members only guides are excellent, so if you’re claiming PIP, you can’t get better advice.

It’s a bugger for you to have to take a hiatus from your work, but this relapse need not be the end of your career. Take some time out, rest, but get physiotherapy help to recover the bits of you that aren’t working, get sorted with a DMD, as you’re doing, and hopefully you’ll be back cooking up a storm again soon.

Sue (Who wishes she’d been a chef but has to put up with being executive chef at home with Mr Sssue being head chef nowadays!)

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Aprciate all the advice so far have read a lot into the information and I’ll also book an appointment with citizens advice. My advisor is very good and hopefully will help me get on track with what needs to be done. Even if I’m to have time to recover and get back on my feet I can always jump head first back into normality when things ease off again :slight_smile:

All good advice I can’t add to. May I wish you luck. Anne

Do you have any insurance policies (critical illness) or any that may include critical illness? It’s worth a phone call to check.

Best of luck

Jan x

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Hello Neilzomg, I’m sorry to hear your situation, but support is out there. Have you been in touch with Belfast Resource and Day Centre | Multiple Sclerosis Society UK to see if they can offer any support. Also,
https://www.turn2us.org.uk/ are a great organisation who may be able to help or point you in the right direction.

Good luck for the future and take care.

I have a meeting that universal credit have set me up with tomorrow it’s like a 45 minute slot to go over everything with me that can be done with their end. It’s possible to get financial support example I was offered up to £1000 advanced payment from universal credit with a repayment plan but until I can see I am eligible for anything I’m refusing to take a penny as I could borrow an advance payment to be told next month I am entitled to nothing and have to find a way to make monthly payments on what I have borrowed to pay my bills. Woman completely understood my situation with work and what’s going on as I need the security for my 8 month old daughter and my fiance. Citizens advice is going to be arranged for Wednesday. It’s been a day of ringing some people and trying to find information. My GP doctor is also supporting me for pip and writing a letter to help me out and due to the fact my Ms nurse and doctor are both off on annual leave I’m left without any care from them as there is no one else to cover until they are back, she has also written a letter of complaint to them while I was in the GP office with her today. Unless you push for what you know you need you never get it but things seems to be moving in a steady motion.

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