Forum

Working with symptoms

Hi,

I was diagnosed with relapsing MS in May so it is very new to me and I am still learning how to cope and adapt. I was given steroids from my neurologist when I was diagnosed and they brought me out of a 6 week episode. I was then under the impression that it would hopefully be six to nine months before I had any further symptoms.

Last week I started feeling like I had flu and my dizziness and fatigue stopped me from driving and being able to work. It felt like I was going into another episode.I was suffering with numbness in both my legs and I also experienced the MS hug for the first time which was very scary. My MS nurse was confident that I was suffering from a virus or infection until I informed her that the numbness was worse this time and effecting more of my legs than before. My symptoms have eased a little and I have come back to work today but I could quiet easily sit here at my desk and cry. My tiredness is very extreme today and I have a lot of back pain. Work is the last place I want to be but I can not afford not to be at work.

Due to the amount of time I have had to have off in the last 18 months I am no longer entitled to sick pay. So when I am off I am only entitled to SSP.Since diagnoses I have found one of the hardest things to cope with is getting back into my work routine.

How do people stay in full time employment when they feel like this? I feel very trapped as I need to work because quiet simply I can not afford to have another day off this month.

So my question is, is there any benefits I can claim to top my wage up if I do have to have a month off or even a week?

It feels awful to not have the option to stay at home if I am to dizzy or too fatigued to get to work, how do the people who have no family or support cope finically if they are off work and can’t claim benefits?

I know my message may seem very money orientated but I have no control over what my MS does but I am trying to hold on to the control I have about paying my rent and feeding myself whilst staying as healthy as possible.

Any help or advice would be much appreciated.

Benefits are a bit of a minefield but I’ll try and give you the broad strokes.

PIP is available for people who work, is not means tested or NI contribution dependant so is always a good place to start. The application process can take several months so is not a quick fix. You can take a test at www.benefitsandwork.co.uk to see if you think you would qualify.

income replacement benefits come next.

Statutory Sick Pay if you are still in employment followed by Employment Support Allowance when this runs out. Your question revolved around “topping your wage up” if you were off for a few weeks but I am sorry to say this simply does not exist. If you were to reduce your hours you might be eligible for working tax credits to top up your reduced income. You can read about them at www.gov.uk

if you are on a low income due to claiming benefit or working part time you might also be eligible for help with your rent and your council tax. You can find out about this on your local council website.

One of the harshest things people have to come terms with is that life on benefits means a substantially reduced income. We are so often bombarded with the myth that welfare provides a cushy life. The reality is very different. However for many people who are finding work a stress and a struggle it is preferable to be poor than to continue to stretch themselves to breaking point.

Jane

That is very help you - Thank you Jane.

I have spoken to HR at work today and it looks like I am one of the lucky ones as they have insurance with Aviva who I can apply with to top my wages up if I am off for more than four weeks.

Thanks again for your help.

Kelly

I second everything Jane has said. You should definitely have a look at the benefits and work website. They have guides to claiming PIP and ESA and their information is current and correct. Sadly there’s no temporary top up to income available for short periods of ill health.

It’s proved very difficult for people to work full time when they have MS, one thing you could consider is Access to Work, it’s possible that with assistance you could keep working for longer. Look for it on the gov.uk website.

Otherwise, does your work have an HR department, could you speak to them about your work pattern, and any adaptations they could make to your work to make life easier. For example, is there any part of your job you could do from home, so you don’t have the extra effort it takes travelling to work, dressing appropriately etc. Or is there any change to your hours possible even on a temporary basis? If there’s no HR department, do you have a sympathetic boss who will help you to manage your current issues?

Obviously if you did have a drop in income, even on a temporary basis, do check what benefits you may be entitled to, eg Council Tax Benefit, and Housing Benefit if you rent your home or Working Tax Credit. These are of course based on quite low income levels so it would depend on how much your income dropped by, and of course if you have a working partner they would be based on both your incomes so may not be of any use.

I hope your current problems are in some way resolvable as quite obviously you want to get things back to where they were and to continue working. It is tough to work with MS, but if you can get over the current hurdles, with the right support you may be ok to carry on for years to come.

Sue

Hi kbrown, I have just started receiving PIP due to my MS symptoms. It’s not enough for me to stop working but a help… I will warn you that application is a long process, firstly…questions over the phone then an intense booklet to fill and thirdly a medical assessment. It’s not bad the worst for me was the realisation when all my issues were wrote down on paper of how much my MS does affect me and my family!!! As I have plodded on over the 3 and a half years of diagnosis x Good luck with your application!