time for a new start?

New diagnosis and before diagnosis
1

Hi,

I’m just thinking and not sure who to talk to.I’ve been unhappy at work for an age, too cold in winter, lack of holidays, no lunch breaks. my boss thinks that I should go in at 9.30, finish at 5 without leaving the premises all day.There are no facilities to make a drink, no water thats drinkable from the taps. a loo with no door handle and cold water for washing your hands.I have my lunch behind the desk inbetween serving customers.my boss had a go at me in Jan for talking to someone for too long.I’ve been there over 10 years and had never had a day off sick , covered holidays and understood that work is work.he said i shouldnt have friends in. this is impossible. we live in a small town . i know most of the people who come in and i’m always more aware not to spend too long talking to a friend and end up spending a lot more time with people i don’t know.when i started with my symptoms i phoned nhs direct who sent an ambulance for me. i missed the morning at work but went in in the afternoon to make up my hours. this was after 4 hours in hospital having my heart checked and blood tests etc. the following week i made anearly appointment at my drs, had pins and needles all over and ms hug. this was before work but the dr sent me straight to hospital.Boss complained that the shop hadn’t been opened on time and to be in on friday.

symptoms are now mainly in my hands and arms, but have lots of other things going on. eg concentration is rubbish, legs and hands randomly not doing what i want them to . the feeling of being bitten or burnt etc and i’m sure my boss thinks that i’m making it up.

i don’t know anywhere that would employ me now but need to get out.

The same at home, while i was in hospital, my husband never visited and when i got home there was a pile of washing and everything to do.i feel like a doormat and all he talks about is how rubbish his life is.

i just want to walk out on it all but feel i should have done it sooner.is it too late. feel like i have a very uncertain future anyway. not the fresh start i’d have hoped for

2

Tonka, you are being treated like a doormat. Your work conditions are disgusting and you are entitled to a break. By law after six hours you are entitled to a twenty minute unpaid break. You should also have facilities for drinking water.

http://www.direct.gov.uk/en/Employment/Employees/WorkingHoursAndTimeOff/DG_10029451

Years ago i was in a similar situation. I went to work with urine infections, chest infections, didn’t have holidays and didn’t get any help at home. I ignored all of the symptoms I was getting until I ended up in hospital with loss of vision and hardly being able to walk.

Months later I tried to go back to work part time but my GP saw the state of me and signed me off work again. My husband started to help in the house so I was getting support.

It is never too late to change your life. Your employer needs to be taken to task. Read the links at the site I’ve given you. You need to be brave and bring up your concerns. Show your boss these links.

http://www.direct.gov.uk/en/Employment/HealthAndSafetyAtWork/DG_4016683

If he ignores it you can contact other agencies.

You need to sit down with your husband and be honest with him. Your husband sounds as though he has own problems and is not looking beyond himself.

I hope others add some advice too.

Jacqui

x

3

It’s never too late Tonka.

Your place of work doesn’t sound like a very nice one at all. For a start, there are certain things that an employer is obligated to provide for employees. Drinking water, toilet facilities, breaks and holidays being just a few. Obviously when it comes to breaks & holiday entitlements it also depends on your hours of work / contract of employment too. Of course, it doesn’t necessarily follow that all employers will provide what they should be providing either - clearly yours isn’t!

I guess what you do about it is up to you. Do you find out exactly what you’re entitled too and challenge him, or walk away? Obviously that may depend on your finanicial situation and also whether you feel up to it. Having a look into whether you’re entitled to any financial assistance may help (if you haven’t already).

As for your other half - has he any idea of what you’re actually going through? By that I mean does he understand the symptoms and what having ms (?) means or is he burying his head in the sand? Have you tried talking to him about how you’re feeling?

I’m not married so I’ve not had to go through the complexities of how my ms affects anyone so close as a husband but there are many here that have and are going through similar difficulties. Hopefully they can offer you some better advice.

I do understand that feeling of despondency though - the constant worrying about the future, it’s always there in the back of my mind. I try not to fret about it but I do. I’m trying to do something about it, but it’s not so easy is it. I’m very lucky in that I have good employers but I’m finding my job too demanding now and know that it’s not going to be that long until I have to make some decisions about it - for my own benefit.

Whatever decisions you do make, don’t rush into them. Take some proper advice about where you stand first. Plus it’s not always good to make potentially life changing decisions when we’re not feeling so great.

I’m sorry that I’ve not been able to offer you much in the way of practical help but rest assured that my listening ear is switched on if you need it. Mail me anytime

Good luck

Debbie xx

4

Hi Tonka,

Trying to be realistic, I think it’s a bad time for anyone to be looking for a new job at the moment, let alone anyone with MS/suspected MS.

So as much as I want to say: “Yeah, yeah, tell 'em to stick it where the sun don’t shine!”, I’m not sure this will be the best outcome for you.

I’m not saying having MS (or whatever it is) means you should be grateful for anything you can get - please don’t think that.

BUT, at the moment, I think anyone, whether they have health issues or not, would be well advised to try to try to sort out any problems with their existing employment, rather than quitting for an uncertain future. Unless you have a guaranteed alternative you can go to, it’s a really bad time to be quitting.

So I think you need to focus on what could be done to improve your existing situation. As others have mentioned, it sounds as if your employer isn’t complying with minimum legal requirements about breaks, holidays, sanitation and the like.

Have you ever raised any of this? If you have worked there ten years, without ever complaining that you couldn’t take a break, get a drink of water, or wash your hands properly, it’s not surprising your boss thinks you accept all this, and that he needn’t change anything.

So maybe a visit to the CAB, to find out exactly what his legal obligations are - because I’m sure he’s breaching some of them! If you get advice first, you’ll be on stronger ground, because you’ll be able to tell him you know what the law is, because you’ve checked.

There is also protection in law for people with disabilities, although it’s a bit of a grey area (to me at least) about how this applies to someone who isn’t diagnosed yet. So that’s another thing you might want to ask the CAB about. I’m pretty sure there would be at least some protection for someone who is suspected of having a serious illness like MS, even if they aren’t diagnosed. Being allowed to have a proper break is a basic right, for anyone, but all the more so if they are known to be ill. So your boss could be breaching not only his general duties, to any employee, but also his special duties towards one who is ill.

The CAB might even be able to phone your employer, or draft a letter for you, setting out what the statutory requirements are, and detailing how he is failing them. It tends to be more persuasive if it comes from a reputable source like the CAB, rather than just sounding like a moan. Let’s face it, all employees moan from time-to-time, and think they deserve a better deal. That’s human nature! But your employer needs to understand the difference between “moaning”, and what the law actually says.

Tina

x

5

I really don’t have anything to add to the brilliant replies you’ve already had. I just wanted to say, “Don’t give up. You deserve better.”

Living with a neurological illness means learning a few things. First of all, to say NO. Second, to be more selfish (to protect your health). Third, to ask for help (and demand it when necessary).

Don’t give up. You deserve better.

Karen x