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Paralympic guilt....

Hi,

I’m desperate to retire from the NHS. I’m 40 years old.

I drag myself in every day. I’ve had AtW help and adjustments twice but I can’t do it anymore. I walk with two sticks over very short distances, use a scooter or wheelchair when out of the house. Numb feet, extreme fatigue and balance is totally shot.

I feel bad because it’s almost as if I’m planning when to go off and leave but I’ve had enough. I have a young family and I do nothing with them because all my energy is spent working 3 days a week.

But the paralympics is making me feel so bad. I look at these people doing amazing things and wonder whats wrong with me?

Just having a rant. I’m going anon because I dont want people to know what my plans are, sorry…

xx

Hi Anon, Paralympic athletes are amazing… fantastic… BUT they do not have chronic illness!

There was only one athlete with MS… good for her… but only ONE. And that is because we MSers have chronic illness.

Our Posh Boys Government have been using the Paralympics to say “Look, this is what disabled people CAN do”. Many many people with disability and chronic illness have been FURIOUS about this. It gives a totally distorted picture of what the majority of disabled people have to deal with on a daily basis.

Drop the guilt Anon. Ask yourself this… Do healthy, able bodied people feel guilty because they did not complete in the Olympics??? Of course not. It would be madness!

Your employer has an obligation to adapt your work so that you are able to do it with your MS. Speak to your manager and with HR. They are obliged to do it by law… even if it means changing your job to something you can manage, reducing your hours, or giving you aids or help in order to do your job.

Forget comparing yourself to the top athletes in the world… and get your job sorted so that you can do it without going through the hell you are currently going through.

Good luck,

Pat x

The fabulous, wonderful, amazing athletes in the Paralympics didn’t have YOUR disability, they have their own and of course had to fight their own battles, but they are athletes who happen to be disabled.

I’d never be an athlete even without MS !!!

Perhaps look at pacing your day out or working flexi shifts? Have you tried modafinal for fatigue?

xxx

Very well said Pat, and grossly ‘ironic’ that the Paralympics where sponsored by (we don’t give)ATOS…

Not many paralympian athletes have a chronic progressive neurological disorder, with all the rubbish that goes with that. A few do - we all know how variable a disease MS is - and some people are relatively lucky, and good for them. But us feeling bad about paralympians is like your 70-year-old- next-door-neighbour feeling bad about not being Jessica Ennis. I know all too well, of course, how easy it is to be seduced into that kind of thinking when one is feeling a bit sensitive anyway about what what one can and cannot do, and how people understand, or don’t, and whether their expectations are reasonable or not. Rant away! - but please try not to beat yourself up.

I don’t know what to suggest. When the point finally came that I felt that I had had enough and was on my knees, even on reduced hours, my employer and their medical advisors felt the same way, so it was in everyone’s interests to get on with it. If you have not already done so (but I expect you have) it would be a good idea to get a clear idea of what the rules and criteria are with you for retiring on health grounds, so you have an idea where you stand.

Good luck with it all.

Alison

x

Sorry Anon, just realised you’ve had two adjustments already. Maybe time to think about giving up work?

You ask ‘what’s wrong with me?’. My answer is ‘you have MS’!!!

Many many of us have given up work because we just could not continue. It’s really not the end of the world. It’s accepting that you are no longer able to work becaue of your MS symptoms.

Get advice from HR and CAB about what benefits you can claim.

Once again, best of luck,

Pat x

Hi, I want to echo what the others have already said. You have MS and as truly horrendous as losing limbs must be, MS has hidden problems. Its a constant battle to stay awake and look interested in things, when all you want to do is sleep. We dont wake refreshed either, as problems still happen when we are asleep…or as in my case, I have to wake myself up to turn over, as my legs need to be lifted. Then there`s the pressure pain I still get, even though I have an air circulating mattress and use a barrier cream.

It`s like fighting a losing battle. But fight we must, to get through each day.

I was retired on ill health back in 2000.

You do right not to broadcast your plans and thougthts of finishing work. But I believe you have to let your employers retire you, not the other way round. I began the process by going on the sick…fully intending to return to work, but it never happened.

Why not do that first, eh?

luv Pollx

I really hope that you will listen to what the others have said - there is no shame in not being able to keep on working, never mind not being able to do what some of the paralympians can do.

What’s more - you might be astonished at the difference if you stop work; I know I was, and many others have said the same thing. Battling your way through the work day, pushing yourself to meet deadlines, get to meetings, finish a project, etc, and then having nothing left for yourself and your family at the end? It is not worth it. There should be more to life and you and yours deserve more. Without the drain of work, you will hopefully find life so much easier and have that extra time and energy to do the important things in life, like spend time with your family.

Karen x

I totally agree with all thats been said, all the paralympics have done is make us with a degenerative illness look even worse,a lot of the general public will think we ALL can be athletes even with MS, i think the paralympians are really good, but most of them are NOT ill, they have a disability, like lost limbs, and have adapted to it,not easy i know,and i really admire them it take guts and determination,but i feel so angry that we have to put up with even more discrimination now.

It prooved it on the wright show this morning, a woman rang and said ‘anyone in a w/c can do sport’ shes so wrong, i use a w/c and can barely stand unaided,never mind do sport,grrrrrrrrrrrrr it makes me so cross,it really does.

hi guys,

Thank you so much for your replies.

It really helps to hear your views. It puts things in to perspective.

I think the time has come to leave. Over the years i’ve cut my hours to 3 days a week and it’s still too much. My poor kids this Summer haven’t done anything interesting.

We are definitely made to feel like a bunch of whinging scroungers, but I know I’ve done as much as I can. Nobody can say I haven’t tried.

OK, self pitying hour over. Time to finish work lol.

Thanks again Guys xxxxxxxxxx

Hi anon, I am currently off work after diagnosis in June, I was started on treatments the end of august,. I am a staff nurse working for the NHS. I work 23 hours per week. I am going back on 26 the of this month. I am going to do x2 10-2 shifts and take it from there. I am sure if you retire through ill health the trust will be understanding.

Take care. X

I am assuming you are in the local government superannuation scheme???

I am and my employers sent me to occy health to be assessed and they stared the process of retiring me on health grounds.

Is it time to have an honest discussion with your line manager,remember if you cut your hours again it will impact on your pension.

Mine is still not finalised after 12mnths,despite it being agreed by all parties that it was for the best. So I am nearly at the end of my 6mnths half pay.I dont know if it takes this long for everyone,but without hubbies money we would be in trouble. ATOS decided I was totally fit for work,whereas all involved people in my retirement (2 of which have to be independant) have put me as never likely to ever work again!!!

I am 44,but with grown up kids so no worries about occupying them,in fact I’ve hardly seen them during the college break. I dont know how many of you do it with dependant children. The thing is if you do retire you can be there all the time. Kids remember the safety/stability of you being there more than fancy outings that only last the day.

I wish you well wherever life takes you.

Pip

And there lies the fly in the ointment - ATOS!

Why do these people have to be such pains in our rear ends. My GP and MS Nurse have both said they’ll support me and at a review by my Neuro last year he said he couldn’t believe I’m still working.

I do understand the need for independent reviews but come on!

Pip - why have ATOS done this to you? What’s their excuse?

I also know a PwMS who walked straight through ATOS to ill health retirement. No bl**dy consistency…

xx

Hi

Paralympic athletes have a whole rang of illnesses & disabilities.

Some do have chronic illnesses but each person is different in how their illness / disability affects them.

Some Olympic athletes had chronic illnesses but each is different.

I welcome what disabled athletes can do and it gives me hope that I can do well in whatever I do, whether its a bit of gardening (sat on my bum) or open a tin of soup.

What is wrong with saying ‘this is what a disabled person can do’. I wanna shout from the roof tops at times ‘I can do that’. Just because I have a chronic illness does not mean I am on the scrapheap. I use aids to help me do things, perhaps not as fast as others but I can do them.

I dont think I am treated like a whinging scrounger. I have seen people treat me more positively since the Paralympics started. I personally think it has done disabled people a great pat on the back for dealing with whatever we have.

Neil

My answer is much the same as others, You have MS. What more can I say, it affects us in different ways. I think we all feel a little guilty if not envious of what we’ve just seen on our screens, especially when politicians say "it’s not what disabled people can’t do it’s what they can do."

This rhetoric is all very well but I don’t think employers especially the NHS are interested in what you can do; I imagine that they need you to be fast, full of energy and able to work under pressure,

Please do not beat yourself up about it, do what is right for you.