May have to give up work, any advice.

I get up at 4:30am every Monday to Friday to go to work where I am mostly a driver. Sometimes I do long drives, others are shorter and at other points I spend the day on site driving a truck or diesel bowser.

As my legs twitch when I’m tired it can be quite difficult to do these tasks or hold on to things properly and the incontinence problems often cause me a lot of embarrassment.

I’ve had a couple of days off sick this morning because of a change in medication, and the tiredness / illness associated with this.

Who do I see? What do I do? What help is available? It’s all new to me and a big step!

Any help appreciated

Thanks

Mel

Hello Mel, from my own experience I know that PPMS and driving will eventually become alien to each other. I now have real difficulty to drive for a sustained period and rely heavily on my wife. I gave up work 18 months ago and have not looked back. Fortunately I was able to use occupational health and had a sound case for early retirement without losing too much. I had also ensured that I had saved enough since the day I was diagnosed (20 years ago) to help cut down the mortgage. I know it’s different for everyone but I’m at the stage where no-one can argue about what I can or can’t do so I’m getting full benefits. It’s worth looking onto. Best wishes, Steve.

Me again! Don’t be afraid to ask specific questions on the forum about this pr anything else. It’s a very helpful place.!!!

As a single father to three teenagers and a mortgage to pay I didn’t think quitting work was on the cards, but things are starting to get difficult and it might be the best option for me as far as my health goes.

I’ve a while to go until I can justify retirement and so it looks like I may have to leave on the grounds of occupational health and sign onto the benefit system - I know there is a disability extra that you can get as my ex-wife who had a couple of strokes was placed on it and my eldest daughter who cared for is very knowledgable around that area.

I was originally worried that if I took that route I wouldn’t be able to run the house or support my children, but it seems like a real possibility now!

Mel

As a single father to three teenagers and a mortgage to pay I didn’t think quitting work was on the cards, but things are starting to get difficult and it might be the best option for me as far as my health goes.

I’ve a while to go until I can justify retirement and so it looks like I may have to leave on the grounds of occupational health and sign onto the benefit system - I know there is a disability extra that you can get as my ex-wife who had a couple of strokes was placed on it and my eldest daughter who cared for is very knowledgable around that area.

I was originally worried that if I took that route I wouldn’t be able to run the house or support my children, but it seems like a real possibility now!

Mel

Hi Mel, your employer is obliged by law to make any changes they can to your job so that you can continue working. That might mean giving you a different post (like office post) or adding equipment etc. They can only make you redundant if there is absolutely nothing else they can do. Be very careful not to leave your job without going through this process. You will have difficulty with benefits if you leave your job by choice. If they eventually let you go, you can then claim Employment Support Allowance (ESA) and try and get into the ‘support group’ which means you don’t have to look for work. If you are on benefits Income Support will pay the interest on your mortgage. If you have Critical Illness Insurance you can claim that with MS, which might just pay off the mortgage. While you are working you can apply for the new PIP (Personal Independence Payment… which has replaced DLA). You could use this money for taxis or anything that would make it easier to continue working. Before you do anything I suggest you talk to your union if you are in one. Or talk to your employer if you feel they are sympathetic and helpful. You could also talk to Citizens Advice Bureau. Another good thing is to join ‘Benefits and Work’ website. It’s about £20 a year to join… but worth every penny. Apart from the fantastic advice and guides they have on the site, they also have a member forum with some very knowledgable people on there. Best of luck to you. It’s a complicated process I know… but worth taking your time, step by step, and getting it worked out. Pat xx

Pat’s advice tells you exactly what you need to know

I know I could have signed on when I was made redundant some years back, instead I took the risk of giving counter-notice (i.e. still got my redundancy paid but left a little earlier thwn planned) when I knew some jobs were due to come up that they could have offered me, that would have involved re-location.

It seems if you do anything of your own volition, you get naff all in benefits!

Good luck with your employer

Sonia x

Thank’s to all,will see what my employers come up with.

Mel x.

Mel the others have given excellent advice, especially Pat. I am a single parent, was a nurse and had to give up work. My union was a big help with my benefit claims, especially when I got rejected. I just wanted to reassure you that life on benefits won’t make you wealthy but is possible. It’s not something I ever envisioned or wanted for myself but my health forced it. I must admit that the budget is sometimes a juggling acct but my health has benefited.

Tiredness and stress worsen symptoms. Now that I can rest when I need to and the stress of letting my employers and co workers down isn’t an issue I’ve felt better and according to my daughter I’m not as grumpy. I have a life, although a quiet one, and I’m not very mobile but I enjoy my hobbies and spend quality time with my family and friends.

As the others have mentioned, do it properly but don’t feel bad if you do have to give work up. The shame of being on benefits was a major issue for me but as so many people have said, it’s not your fault, you’re not taking the pee, ms has just struck with all its annoyances.

Take care. Cath xx

Thank’s have taken all the advice in,will have to put it into practice as soon as possible and i will stay positive thanks again.

Mel x.

Mel, Pats advice is very sound and Cath is right, benefits won’t make you wealthy but it is entirely possible to live comfortably. Good luck, Nina x

Hi Snoopy, you have had great advice,

like you I’m on the border of work or not to work that is the question!! I have my work health assessment on the 27th of this month, I was worried about my ability to be ready to leave the house for 8am never mind 4.30am. My safe Driving ability is now down to 20mins from 1hr a year ago so I’m worried about the speed of decline I know were all different but I can imagine how sat in one position

for any length of time must cause some pain or numbness.

I know that my employer will make any reasonable adjustments to enable me to retain my job, I have contacted Access to Work to start the ball rolling, but like the others have said due to the fatigue what quality of life will I have at the cost of working? I know I will go back as I need to know if I can before making any final decisions.

Best of luck

Pauline

Pauline x