how, when and why to give up work

Everyday living
1

hello fellow MSers,

Unfortunately I feel like the time is approaching to give up work. Everything is becoming such a struggle, now including speech as from.the last relapse. As a teacher I don’t feel I have the necessary fire in my belly to get kids to remain on task for an hour at a time, let alone the energy to work in the evenings and weekends (yes, most if us do, as well as for most of the copious holiday time we get). I’ve applied for four days per week as from September to give me some respite and thinking time, as thank God the critical illness has paid off the mortgage.

If anyone has given up work id really appreciate any advice or tips on when,how and at what stage in ‘your MS journey’ (sick, and sic) you did it.

In short, my symptoms are getting worse by the week, and if, 5 weeks post relapse, this is my new ‘normal’ then I’ve not got much of a choice. Not self pity btw, just cold objective reality.

yours, ever hating michael gove, fluffyollie xx

2

Hi Ollie,

Slightly off at a tangent I’m afraid, but I don’t think five weeks is anything like long enough to tell what your “new normal” will be, so beware of acting hastily. It’s much easier to get out of a job than back into one, so I’m glad you will not be making any firm decisions until the Autumn, at the earliest.

My worst relapse - coincidentally the one (as with many people) that led to my diagnosis - lasted about a year. I’m not saying there were no improvements at all before that, but it was a full year before things got as good as they were every likely to be. How I was at five weeks (struggling to walk five minutes to the post office, and pick up a single blanket from the dry-cleaners) would have been in no way indicative of how I am again now (able to walk 3.5 miles unaided).

I think we’ve had a similar discussion before, but you need to be wary of assuming there’s a fixed timescale to recover from relapses, and especially that it’s as little as five weeks. As a rough guide, I’d say what hasn’t resolved after a year will usually be permanent (but MS being what it is, I’m not sure there aren’t exceptions, even to that). But anything prior to that still leaves scope for improvement, and five weeks is certainly too early to conclude anything about what the end result will be, and definitely to make any irrevocable decisions.

Work ended for me when I was made redundant anyway. I’ve no reason to assume it was health-related, as it was along with over 600 other people - the vast majority of whom were in reasonable health - or a lot better than having MS, anyway.

When it first happened, I did have vague notions of trying again with something else, but never found the motivation - could not cope with the stress of interviews etc. at 46, and ill - I’d worked at the same place (with a few changes of ownership, job description etc.) for over 23 years - I was totally out-of-the-loop as far as modern job-seeking is concerned.

For example, I was advised to have “at least 40 people” in my LinkedIn network. I realised I didn’t know more than about six who would be of any conceivable relevance/influence careerwise. There was no point adding retired people and stay-at-home mums to my professional network!

Tina

x

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hi fluffyollie

i was off sick for 6 months, was told that if i was off sick any more that it would be at half pay.

the job had changed immensely and i didn’t want to go back, felt sick at the thought and it made my nerve ends tingle.

so i had 12 months off sick and occupational health saw me.

i ended up taking ill health retirement.

so i’ve been a pensioner since!

no regrets except missing a few colleagues although we meet up occasionally.

what you need to know is that your pension is based on your most recent salary, so reducing your hours will affect it.

i had moved from teaching to working as an advisory teacher so moved from the teachers pension to greater manchester pension fund.

it took me the 6 months at half pay to get my head around the whole thing.

it’s something you need time to think about, given tina’s explanation that recovery from relapses can vary enormously.

good luck and i hope you make the decision that is right for you and your family.

carole x

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This bit in particular really chimed with me. The thing that did it for me at work was the constant, frustrating and embarrassing misery of knowing that I was simply unable to contribute at anything remotely like my pay grade. Self-generated energy, resilience, mental agility, ability to drive projects forward and talk people round by sheer, persistent force of will… All ebbing away. All the things that I needed to do the job well.

I wasn’t a teacher, but I can well imagine that similar feelings apply, and that is a horrible thing for a person who has always taken pride in doing a job well. People often say ‘stay at work for as long as you can because work is good for self-confidence, feeling of worth…etc’. It doesn’t always work that way. By the end (I worked 5 years f/t after dx and then 3 p/t) being at work was taking lumps out of my threadbare self-esteem every day. Not my employer’s fault, or my colleagues’ - they were are brilliantly supportive - but just the fact that doing a job badly is a real downer. So my advice is, don’t spend too much time doing that.

Alison

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[quote=“pigpen”]

what you need to know is that your pension is based on your most recent salary, so reducing your hours will affect it. [/quote]

It depends on the rules of your pension scheme. Before retiring on ill health, I reduced my hours from FT (37 p/wk) to 20 p/wk) Under the rules of the LGPS, if the reason for the hours reduction is the same as the reason for retirement, as it was in my case, the reduction is ignored and the pension is calculated as if you were a FT worker, so my retirement pension was actually greater than the reduced salary I had been receiving

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Hi

I would advise two things:

As others have said don’t rush into anything, take your time. I haven’t got RRMS so I’ve no experience of how that affects people and whether how you are now is permanent or not.

Secondly, get some good advice, from anywhere you can e.g. your union, HR, the MS Helpline and weigh it all up.

My story for what it’s worth is similar to ‘pigpen’s’. I am SPMS. I was a teacher and went into the local LA as an adviser. I transferred my teacher’s pension into the LGPS. I was about to go through ill health retirement then thanks to this government got voluntary redundancy. The LA were incredibly helpful and supportive. They bent over backwards to keep me working and were very good throughout the redundancy procedure. I found HR to be the best source of advice.

Incidentally you will have to go through Occupational Health if you want early retirement.

Take care and good luck with whatever you decide to do.

Anne

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Hi, the best way to retire early, is on ill health grounds. Normally that is decided by your employer and it happens after a lengthy bout of sick leave.

When it happened to me, I had been unable to continue working the required hours, with the level of physical stamina needed.

I was seen by a doctor of my employer’s choice, who declared I was unfit for that particular job. As there were no vacancies suitable, it was mutually agreed that I retire immediately. I could’ve stayed on a few more months, as was my entitlement.

There’s no need to rush into a decision right now for you.

I wish you all the best.

Pollx

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I had my severest relapse five years ago resulting in my being off work for nine months. After I returned I went from working 52 weeks to working term time as I thought this would benefit me, unfortunately it just made going back feel worse. Since then I have got steadily worse and am now considered SP. I felt I wasn’t doing my job to the best of my ability, I was losing sleep worrying about things at work, I was forgetting important things, I simply wasn’t functioning properly.

Last April I finally gave in and accepted I could no longer continue to work. I went to my GP and explained to him how things were regarding work and he assured me he would be happy to sign me sick until I no longer needed him to. As part of the management team I felt I had to tell my Manager that unless a miracle occurred I would not be back at work.

I was eventually sent to the Occ health doctor who was happy to recommend my application for ill health retirement. I was able to supply letters from my GP and MS Nurse stating my condition and problems re my MS which were then used to assess which level I was to be retired at. It helped my application that I had reduced my work load by going term time, the more proof you have the better your chances of getting the highest level of early retirement. As far as ESA goes I was placed in the contribution based support group I was given this on the evidence of the letters of support I used to support my retirement. Keep in mind that for every £1.00 over £85.00 you recieve in private pension they will reduce ESA benefit by 50p this is worked out on the gross pension. It irks me no end that they take 50p off my ESA for every £1.00 I pay in tax but that’s a moan for another day.

While I still steadily decline I am much happier and relaxed for not working. I do keep myself busy, it is rare for me to spend a full day at home I feel it is important not to isolate myself.

If I have not made myself clear on some points or you would like further info please feel free to ask on the forum or send me a message I will be happy to help.

Best wishes

Jan x

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l see you have put an actual photo of yourself for an Avatat Poll. l like it - but l think your new shorter hairdo looks easier to manage.

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dear all

many thanks for taking the time to read and respond to my e-mither above. i have emailed my union, and am going to the doctors today (again- i should have a named chair as i feel im always there) to ask about extending my phased return as i think i need more time, especially if the recovery time after a relapse is longer than i thought- am still waking at silly o’clock with pain in my leg, along with a whole encyclopaedia of maladies.

anyway, in short, thanks for the advice and being bothered to read and respond; i am finding MS to be quite an isolating condition which is probably common?

nice hugs and best wishes, fluffyollie

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Very difficult for you. Are you by any chance on DMD? I was retired on ill health grounds 21 years ago as I had 4 major relapses in 1st year of MS and never recovered. There were no DMD’s back then. I am now on Tysabri & have gone from 2 major, 7 minor relapses a year to NO relapses at all since starting Tysabri ( 6 years ago). If I had been put on Tysabri 21 yrs ago, I would still be working. Before you make any major decisions, see if you are eligible for Tysabri. If so, try it & it may stop further relapses & enable you to keep working, if that’s what you want to do. it’s never an easy decision to stop working, unless you have no other option. Good luck,

Jools

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Something else to consider when working out the financial implications of retiring…you will no longer have to pay National Insurance and you will no longer be paying private pension contributions. The savings of those two things can amount to quite a substantial sum.

Good luck

Jan x

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On a teachers pension they take your final salary or the average of your best 3 consecutive years of salary over the last 10 years, adjusted by some Treasury inflation factor to what it would be worth today, so if your salary dipped at the end, it might not matter that much. My early retirement pension is based on better past earnings adjusted to today’s equivalent, with the result that a salary some 24% higher than my final salary will be used. The other thing to consider if retiring on health grounds, is whether you would be doing so because you can no longer work full stop, or just that you cannot work any longer in your current role as a teacher. If you are effectively ‘on the scrap heap’ through incapacity, then I believe they will enhance your pension to what it would be worth if you had continued to make contributions up to your official Pension scheme retirement age (depends on your age and when you joined TPS). If you could work in some other capacity but not your current job, then I think your pension is not enhanced beyond what has accrued through past contributions.

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A word of caution: a lot of that depends whether you’ve been officially medically retired, and thus able to start drawing your pension immediately, or have simply made the decision to stop working.

In the latter case, there are good reasons still to contribute to a private pension, if circumstances permit, as you can contribute up to £2880 net each year, even if you’re not earning, on which the government will give you basic rate tax relief, to round it back up to £3600!

I’ve made a point of maintaining my pension contributions since finishing work - especially since the introduction of the new pensions freedoms - which mean I’ll be able to do as I like with it from 55, and not be forced into an unfavourable annuity.

It’s a lot of money when I’m living on savings and investments (no salary or benefits), but not doing so would mean I was writing off £720 in free money from the government each year, so it’s worth tightening my belt now, to get more back when I can eventually access it in a few years.

Similarly with NI. Naturally, if you’re no longer working, you’re not obliged to pay it. But if you’re short of the number of years necessary to guarantee a full state pension (I think currently still 30, but will be moving to 35 imminently), you can elect to make voluntary contributions in years you’ve stopped working, to secure your entitlement.

I have not yet decided whether to do this, as I won’t qualify for my state pension 'til I’m 67 at the earliest, and I expect it to go back still further before I get there, so it may well be 70+.

I currently have 29 years’ contributions (should be 31, but I have two years missing from when a former employer deducted them but didn’t forward them, and it’s too late to correct now).

I have to weigh up the expense of making the voluntary top-ups with the risk I may not live to see my state pension age - which keeps rising - and thus it will have been money wasted. Unfortunately, voluntary NI contributions ONLY count towards state pension. You can’t use them to access other contributory benefits, such as contributory ESA or JSA.

I’m just pointing out that stopping work needn’t automatically mean an end to pension contributions or NI. Depending on individual circumstances, there might be a case for still doing one or both, voluntarily.

Tina

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My comments were based on the assumption of being medically retired therefore drawing an enhanced final pension. When ESA is awarded however reduced it may be Narional Insurance contribution are kept up to date for you. Sorry I don’t always make myself clear

Jan x

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Hi

The trouble is the pensions game keeps changing the rules, never mind the fact that the rules differ between occupations. Teachers have different conditions to local government employees although technically they have the same employer. You do need accurate, current advice.

Anne

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17

Excellent advice Anne.

the bottom line is you have to work out what is the best deal for you and go for it.

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18

the new pert boobs are a bit nice eh?

poll

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Or lemtrada :slight_smile: Not that i’m happy with my diagnosis, but, it’s much better than what would’ve been on offer for treatments 10 years ago :slight_smile: Goodluck xx

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Being a modern, liberal metrosexual man, I was naturally looking at your eyes, not your boobs :0)

something quite funny just happened btw- autocorrect changed ‘boobs’ to ‘blobs’…