MS & My Money

This week Joan Jordan speaks powerfully about the reality of living on a fixed income. She shares with us the value of being honest about financial issues to ensure you don’t miss out on life.

I will NEVER lose the thrill of getting my first ever, real, grown-up pay-check. Emergency tax couldn’t dull the buzz of having my own money which I could spend on whatever my 22-year-old heart desired. The cash was mine and the shops were calling. Oasis first! I swanned past the 70% off rail and noticed an avocado green suede skirt winking at me coquettishly. I tried on the timeless classic and handed over the notes. I loved it! Buying stuff with my own money rocked!

Since I got diagnosed with MS, I guess I have adjusted my lifestyle considerably. You could say that I am cutting my green suede to meet my measure- which is currently postage-stamp sized. I need to watch out for getting trapped into expensive events where the champagne is flowing and the bill is split at the end. I know the price of everything and the 70% off rail is the only place that is not off limits in Oasis.

Digging deeper- having my own money which I had earned myself gave me a sense of worth. Now that I don’t have my own cash, I feel a loss of independence and certainly a huge amount of guilt that I can no longer support my family financially. I have an honours degree in Computer Science from Trinity College and a EUPATI qualification (patient education) but despite many applications, I haven’t even been given a single interview since I got diagnosed in 2010. This gets discouraging after a while and my confidence has certainly taken a bashing.

I do worry about the future and how we will manage financially. It’s hard not to. Currently, one ad on the TV really irks me. It’s about Kate and Mick. It’s the last day of their mortgage and it ends up with Kate remarking that despite their trials and tribulations- “We just KNEW we could make it work”. I want to make it work Kate- believe me I do. Sometimes, things outside your control happen and try as hard as you can, it just won’t work anymore….  

Having lived on a tight budget for a few years now, my advice would be to take a good look at how you are currently spending your money. Cut out what you consider frivolous but be careful not to launch into full blown austerity. If you really like the branded ketchup- then let it remain on the shopping list. If the fancy coffee to mark the end of the week makes you feel better- then relish every drop and don’t let yourself feel guilty about it. If you get invited to an occasion, be clear that you are covering your own costs. If you can’t possibly afford it- don’t go! If you really can’t make ends meet, talk to somebody you can trust or even your local Citizens Information to check that you are getting all your entitlements. Denying the problem doesn’t help.

Have you got any tips on managing your money while living with MS? I would love to hear them

**IPPOSSI, The Irish Platform for Patient Organisations, Science and Industry, is developing a Patient Education Programme in Health Innovation. Apply before the 30th June to take part. 

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