Forum

So I took your advice

Primary progressive MS
#1

HI lovelies,

Long time no write .

So, I took your advice and went on sick leave…just lost the will to cope. I am now officially redundant as of 31.07.

In a weird place right now trying to come to terms with losing the job I’ve been doing for 29 years.

I know I won’t be able to find/do the same job anymore so am going to try going down the admin route.

I haven’t signed on yet as I’m trying to find out where I stand. I want/need to work from home and need to be forearmed before I go.

I’ve looked on the Benefits and works website but for some reason I can’t download the info I need (I’m a member) I emailed them a few days ago to explain the problem but haven’t heard back yet

Anyway, just thought I would give you an update as to where I am at the mo.

Hope you are all as well as you can be.

Oonagh

Xxx

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#2

Hi Oonagh

Its always a huge decision to make, but give yourself time to adjust and get your head round it, and before long I suspect you will be thinking that was the best decision, that’s how it went for me and quite a few others.

Fingers crossed it all goes well for you, nice to see you back on the forum.

Pam x

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#3

Hi Oonagh, very hard for you. But I agree with Pam… it ended up being the best decision I made. After a while I realised just how hard I had been pushing through fatigue… in fact I got shingles on my face and scalp before I finally came to a full stop!!! (Not an attractive look… and the antiviral prescribed gave me the most terrible wind… thanked my lucky stars that I live alone!).

Thinking about Benefits and Work… are you on Twitter? Might be worth sending them a tweet. I find now the best way to get a response from anyone is to tweet them.

Best of luck with it Oonagh… who knows what doors might open for you now?

Nice to see you on here and to catch up. Been wondering how it was going for you.

Pat xx

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#4

Hi Oonagh. That is a very difficult time but like the others once I retired I felt a huge burden had lifted and the timing had been right for me. I agree that you need time to sit down and smell the fresh air before you make any important decisions but know what you mean by needing to know where you stand. Take care and I hope you find what you’re looking for.

Cath xx

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#5

Hi Oonagh

with Benefits, give them time, they eventually come through. They’re under pressure of the immense workload imposed on them by politicians who have no real concept of what it’s like to need this support. (Sorry, my own personal axe to grind!)

they will, in my experience, back pay you if they owe anything when things do finally move, as long as you can prove dates. Keep a record.

lots of luck with finding some suitable work.

Kev x

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#6

Hi Oonagh,

Such a hard time for you but as the others have said, although it takes time to adjust I bet like the rest of us given time you will come to know it was the best thing you ever did!

Good luck with the benefits.

Nina x

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#7

Hi,

Thank you all for your replies

Still wating for reply from Benefits and work but I shall be patient

I’m only 45 so am soooooooo not ready to retire just yet.

So watch this space!

Oonagh

Xxx

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#8

Oonagh I retired at 43 so I know how you feel. That relief of not having to let them down by calling in sick is a huge relief. I had to a few times and guilt made me very depressed. Find yourself a hobby though so you maintain a feeling of accomplishment, picked me up so much, along with happy pills!

Cath xx

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#9

Hi

It’s been a while, I hope everyone is doing okay.

A couple of questions…I’ve been put on Baclofen as I’ve been getting severe cramps at night. I’m taking 15mg at night at the moment (no side affects so far fingers crossed) Was just wondering what dose anyone else is on? I’m going to up it to 20mg tonight. It has helped, some nights I don’t have any cramp other nights I do (I was being woken up every hour before I started taking it).

The other question is about turmeric. Apologies if this has been asked a million times before. I use it a lot when I cook and was wondering if anyone takes turmeric capsules?

A quick update about me. I still haven’t signed on, trying to pluck up the courage. Has anyone seen a disability employment advisor? (sorry that’s another question LOL). I’m just worried that I’ll be put under pressure.

Sorry my post is a bit ‘all over the place’. Brain fog central here at the moment.

Again, I hope everyone is doing okay

Oonagh

Xxx

#10

Hello Oonagh

It is the most difficult of all predicaments. To stop work or not to stop work? To change direction or just retire? Trying to deal with the great heart and head conflict can be very confusing. While we usually see this as a straightforward dilemma between logic and desire, in our case both factors have contradictory sentiments and conclusions between themselves. Two years ago my heart was saying stop I’m too tired but it was also fearful of losing any feelings of self worth. On the logical side it could be a health versus wealth issue.

I retired. I love it! But I did a lot of homework about pay offs and benefits.

Best wishes, Steve.

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#11

Sorry I accidently hit the Anon box…

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#12

Hi there, I had to take my employer to the court due to disability discrimination but it is a very difficult and incredibly difficult case, due to the proof that you need to provide in your defence that there is a case. It’s awful, I just thought I would answer that one question that you had posed.

When it comes to such a serious illness there is not an early retirement age there is just the right age for you, and it’s different for everyone. But believe me it’s not as scary as you think.

Polly xxx

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#13

Hi Steve,

You have described exactly how I’m feeling

I have decided that I definitely want to work I just have to sit back and think about what I really want to do. Ideally I’d like to win the lottery, buy a little cottage by the sea and write (just a dream I have LOL). To be honest, although it would be nice to be bringing a little money into the house, I want to work for my sanity, and as you said, self worth. I’ve always been a confident, independent woman and I want some of that confidence back.

Thank you for your reply Steve, it’s much appreciated. Glad that you love retirement!

Oonagh

Xxx

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#14

LOL! I thought it was you when I read the post

Thanks so much for your advice Pat (as always). I had a look at ESA…it looks like a nightmare. I’m definitely not ready for that yet . I’ve been looking at courses to brush up on Office and I have a programme to teach me to touch typing so I’ll see how I go.

Lovely to ‘hear’ from you

Oonagh

Xxx

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#15

Hi Polly,

Thanks for your reply. Sadly when I was made redundant they had covered their a***s.

I totally agree with ‘the right age for you’. I’ll bear this in mind

Thanks again Polly

Oonagh

Xxx

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#16

Oonagh I can fully understand your reluctance to claim benefits, I won’t lie, I had a hell of a time and still cringe every time a heavy envelope comes through the letter box. Pat hit the nail on the head though, by claiming ESA you will get all sorts of help training and applying for work and when you find something they’ll come to the workplace and make sure you get any equipment, chairs etc to make it comfortable and safe for you. They offered to do that for me but then as I was a nurse and my doctors wouldn’t give me permission to work, I had no option but to retire and I’m coping with my ms so much better now.

Good luck with whatever you decide to do.

Cath xx

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#17

Hi Cath,

I used Access to Work and Occ Health when I went back to work to make sure I had everything I needed. Now I need a job where I can work from home as my condition has worsened since I left work

From what you and everybody else has said, it seems retiring has been the best thing you’ve done I just think I have a few more years left in me - of course I might just be kidding myself but I’m going to give it a bloody good go first

Thank you Cath

Oonagh

Xxx

PS I know what you mean about those heavy envelopes…especially the brown ones

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#18

Hi Oonagh

Nice to hear from you, I hope all your plans work out for you, you deserve it.

Take care

Pam x

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#19

I saw OH yesterday who told me I was unfit to work, ever, PPMS. Only diagnosed a year and have been fighting a losing battle to keep working. So I think I have one week left to work and then will be signed off sick until all the paperwork is through. To be fair I feel very relieved not to have to fight the battle to go to work any more. Time to think about what to do next!

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#20

Hi Onmyown, that’s exactly how I felt when I finally finished working. I had been fighting my way through fatigue for so long that it was an incredible relief.

When I look back on 10 years or more before I first got ME dx (a couple of years before MS dx) it all seems to have been fighting fatigue… work, holidays etc. I thought I was lazy!

It will seem strange at first but you soon find things to do that don’t require energy!

Good luck… let us know how you get on.

To apply for benefits you can’t do better than subscribe to the website ‘Benefits and Work’. It’s about £20 a year to subscribe but then you can use their ‘members only’ step-by-step guides to applying for each benefit.

Pat xx

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