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mjas0505

MS and the ability to work....I am at a crossroads.

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mjas0505

Hi All,

 

Thank you for letting me join the forum.

 

Very quickly about me.....

  • I am Male, 44
  • Diagnosed with RRMS in 2009
  • Married with 2 kids
  • History of numbness and neuropathic pain - tried many things but nothing ever dents it
  • Getting a little worried about my future!!!

And so this is where my story begins. I am lucky, with the exception of constant pain for the last 12 years in my hands, a limited amount of balance issues and some reproductive problems, I feel like I have gotten off with my condition so far. I take Gilenya daily following a drug trial and things seem stable.

 

I am employed, I work full time in an active role, I am the only person working for the company that employs me based in the UK. I run up and down the UK, drive lots of miles, run around building sites, up ladders, into lofts and its a very physically demanding role. I havce never told my employer I have MS.

 

But....I have noticed a decline recently, not one that can be understood by many unless you have this condition but I am finding the physical side more and more demanding. I am feeling that my symptoms are getting worse and it will get to a point where I will feel I am putting myself and others in danger if I carry on.

 

My job is all I know and I am getting to the point where I need to consider whether I can do it or not. I am also considering registering myself as being disabled.

 

So I need to make a plan in life. What happens next? I know that unless I do the job I do with my current employer, there is no other job for me. I am their man in the UK and there is no desk job equivelent. All I know is the travelling and managing that I do. Also, I earn a good wage, very good, and if there are to be changes in my life then I dont want to scarifice my earning potential to do it. I have all those great things that a guy at my age has...mortgage etc.

 

I have done nothing so far, other than join this forum and tap into the experience of others whoi may have some sage advice or guidance from me.

 

I hope there is some help out there and I am also looking forward to helping others if I can!!!

 

Thanks in advance.

 

Mike


Edited by mjas0505

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ptlike

Hi and wellcome. I also had a physical job but had to quit for the safety reasons you mention. You should be eligible for pip/ dla and sick pay/esa if you need to quit. Your mortgage maybe covered by insurance ???? My advice would be to speak to citizens advice who will be able to help you come to a decision as to your future. All the best Peter


Edited by ptlike

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Sleepy
Scully

Hello Mike,

 

Welcome, good to have you aboard.

 

It is a conundrum trying to balance MS and work...before I get into the why's and where for's, just a few points.

 

With my ( retired legal hat on firstly)

* you are not obliged to actually tell your employer. The only people you legally have to inform are the DVLA, and you drivers insurance company...DVLA isn't a problem, they review your licence every 3 years, for free. Oddly when I informed my driving insurance company they note it down but my premium didn't change. I hope you've done those two things ?

 

Back to the employer - As you say, your job is getting harder to do, I am a little concerned about the safety issues...as, if you were to fall, and then you have to admit your have MS after the event, Which you will do, as H&S would be involved, it could cause a myriad of issues...to say nothing of insurance companies doing a lot of wriggling..

 

By telling your employer you have MS, under th Discrimination Act ( can't recall the year ) they can't simply sack you, they will be in hot water if they did..but they can be asked to make 'reasonable changes or adjustments ' to make your job easier....they are bound by law to do this, but you'd need to check the Act for precise details, or consult an employment solicitor, some do a free initial interview. Or the citizens advice mob, although they may not have the precise legal advisors .

 

IF, you quit, then you would need to apply for DLA or PIP, it's not a lot unfortunately, and it depends on medical, so, for example, if you were able to walk more than 25 metres...it's reduced or not given at all.

Employment and Suport Allowance or ESA is another sorta minefield, if your NI contributions are paid up you qualify,..think it's about 90 a week, any enhanced extra depends on savings, if you have other income, if your wife works, pension income, etc, etc...

 

So, quitting won't necessarily mean you can cover your outgoings such as mortgages..I would suggest the following.

Check your mortgage insurance and see if it's covered in any way should you be unable to work.

I assume you don't have any income replacement policy ?

 

I think there is a DWP road for 'mortgage relief ' but never used it, so again you would need to check this out.

 

I had to stop work mainly because of the unpredictability of this condition, and daily difficult pain, I had trouble working a full week, not great when a case would be listed for several days or weeks..

 

Clearly I can't advise you whether to quit or not, and you need to check the above points, it's a big decision.

 

Finally, make a call to the MS Society helpline, free number 0808 800 8000and discuss this with them, they are excellent at listening and may well be able to point you in several directions for help. Most of the advisors also have MS so they know the issues when faced with MS.

 

It's a little quiet here at the moment, but I'm sure others will be along to throw their hats in the ring. Do feel free to ask questions...and don't feel that any questions are daft or stupid, they aren't ..

 

Scully


Edited by Scully
  • Like 2

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Nick

Scully has made a lot of important points. Do please tell DVLA as this is a legal requirement and failing to do so could mean your car insurance is invalid. When I did this it simply meant my licence needed updating every 3 years (for free) and later when I had difficulty driving I put myself through a 'drivability' assessment (free if claiming DLA/ PIP) which now means I can safely drive using modifications.

Like the others I was in a physically demanding job, but due to strict medical assessment requirements, had to give up at an early stage.

This is a very difficult decision for you and, as has already been said, you need to be aware of the complexity of government benefits.

One good example of this was that when I was force to 'retire' (Aged 52) I had expected to be able to claim ESA, however due to my receiving an income from a pension, this negated the value of ESA to zero. One good point about claiming all that you are entitled to is that you should be able to claim NI payment credits. Another thing to understand is how the new pensions system works and the need to keep up with these NI payments, one way or another. Get a pensions forecast https://www.gov.uk/check-state-pension

 

Again understanding the DLA/ PIP system and forms is a nightmare! Help is definitely needed here. A good place to start is here. https://www.benefitsandwork.co.uk

an organisation well worth joining.

 

Hope that is a bit more help and don't be afraid to ask! We know just what it's like trying to work out what's best.

 

 

Nick


Edited by Nick
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Just another Warrior...........

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Nindancer

Yes, most has been covered already but are you a member of an occupational pension scheme or do you have a personal pension? :what: Also, do you maybe have any critical illness cover for your mortgage? Some of these policies will cover MS.

I took ill health retirement and drew on my modest pension arrangements.

Good luck & welcome

Sonia x

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Mal

I worked for years not knowing i had MS worked as a panel beater then a steel fabricator welder both heavy jobs ,

then i was DX with fibromyalgia so moved on to what i thought would be a lighter job in a factory as a spray painter ,

after a while i was asked to manage the department but then the job become too stressful trying to manage and still

on the tools trying to cover for bad workmanship so decided to become a promotor which was great until venues started

closing down , some overnight lol.....by then i had my DX for MS and it was catching up fast onme , decided to relocate myself

back home and thought i would have a good rest .......5 years later im still resting :tvhappy: . :lol:

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Nick

A subject of great importance is the relationship between stress (work related or other) and MS particularly before diagnosis. Like Mal I worked with MS a long time before diagnosis. Again the similarity when taking on a more demanding and stressful life, and finding your body was unable to cope, was like my own experience.

Finding a stress free environment, work/life balance is difficult, and yet it's not really a case of 'resting', more a case of finding a balance that suits you.

 

Nick

  • Like 1

Just another Warrior...........

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