MS & Money

Having MS means that unpredictability is part of your life. 

Like Emma wrote in her first piece about MS and money, “Having MS can affect our ability to earn. Not earning can cause a financial crisis and a financial crisis can affect our peace of mind causing great stress and emotional wobbles.”

On my day of diagnosis, my neurologist at Beaumont Hospital, said, “From now on you should change your lifestyle, and work.” At first, changing my lifestyle was not an option. I never realised, though, that on a physical level, my body had already decided for me. Stress and anxiety flood your mind, and immediately you think, “Will I have to give up my job, and if so, for how long?” 

Retiring from work isn’t an easy question because you don’t want to become a liability to your colleagues or yourself, so it brings a lot of ‘What ifs…” and “I don’t want to lose my…” In fact, it took me a good while trying to find a definitive answer to that question. 

At some stage, the level of fatigue, trigeminal neuralgia, and other symptoms became a hurdle too many, and even sitting down in front of a computer for an hour in the office had me crying of facial and eye pain. Again, my body had decided for me even though my mind didn’t want to give up any freedom working had given me. 

Being on a disability allowance or invalidity pension teaches you how to be creative with money. 

Absolutely, you want to remain financially independent for as long as possible. There are many things to consider, i.e. will you be able to live on the level of income for example, which social welfare benefits you might avail of, can you still do some work or what is the outcome of your occupational doctor’s exams, etc.

The prospect of having to rely on a weekly social welfare income is daunting. So many things depend on that social welfare payment because life in Ireland is expensive, and money seems to fly out the front door faster than it is coming in. Bills and rent require rescheduling, and you need to learn to squeeze as much money out of what is left. 

You can sometimes swap Debenhams for Penney’s or the weekly take away for a monthly one and instead lose weight with healthier food. Try and cut credit cards in two or phone a money advice line that can help you sort out outstanding bills, credit cards or bank loans.

If you feel that giving up work is the only option left, do some research beforehand on the Citizens Information website where you can find a checklist for people with long-term illness or disabilities, be aware though that some benefits are means tested while others are not. If you need a hand filling in paperwork related to benefits, you can find a Citizen Information Centre here. 

Being retired has been the blessing my MS needed. I still have lots of trouble with fatigue despite using several treatment options and trigeminal neuralgia remains an ungentle reminder of my illness. What has been a blessing is that whenever I now feel I need to withdraw to rest because of stabbing facial pain or fatigue, I can do so without an employer telling me to go back to work. It sounds so simple, but it has changed life for the better.

Financially, life is a challenge. For example, buying luxurious coats, shoes, and handbags, or buying an expensive new laptop or jetting off somewhere far, far away, now those things belong in the past. 

But, life is about adaptation. And as time goes on, you begin to realise that maybe you should have retired sooner. It didn't turn me into a wealthy, female version of Richard Branson, but it has given me another chance of starting over. Yes, with less money in the bank, but emotionally stronger and richer than I ever thought possible.

If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter