Willeke and The Cost of Multiple Sclerosis

One thing we can all agree on is the cost of living with an incurable illness like multiple sclerosis. It slices and dices through your physical life at will, no matter how you think your life is. It equally has little regard for your mental and emotional life. 

Sacrifices and Choices: Holidays and MS 

I presume we're all on the same page here, and you also had to make sacrifices you wished you didn't have to make. Do I go on holidays knowing the sun and high temperatures will be a big spoiler that will melt valuable memories? Or do I stay at home knowing that tomorrow is just another day doing the same thing, blah blah blah?  

Early Retirement: Life Changes at 36.5 

I get it. The cost of life with MS is a dear one. I had to retire at age 36.5. That 0.5 is an important one as it is at least six months into my 36 years that I take stock of and say, "Hey, it took MS another half year to try and bring me down!"  

Navigating Relationships with MS 

But MS takes, and MS gives. We've gained love, support and many alternative ways to live, but some of us lost love, friendships, jobs, and our old selves. In short, nine thousand people in Ireland can tell an epic story of how they got here, one that is to be retold because of the nature of MS. While I may be alone in thinking that MS is a lonely illness as no two people are alike due to the plethora of different neurological symptoms associated with it. Still, your closest environment, in a sense, also has MS as the physical, mental and financial impact it has on those around us.   

The Financial Toll of Multiple Sclerosis  

The figures don't lie. The societal annual cost of €438.8 million in 2021, and the annual cost of relapses was a staggering 22.7 million. As such, the cost of MS on any given person is an expensive one, albeit partially hidden by the way the Irish healthcare works. One example proves that more needs to be done to support carers: informal care hours by family and friends have increased since 2015 to a staggering 2,956M days of care in 2021.  

Improving Quality of Life with MS 

While I try not to let the costs get to me, it does make my grey cells itch trying to find out what the personal impact of MS is, primarily its impact related to our quality of life. We all want to live as much as we can, as long as we can and more importantly, as best as we can.  

Thankfully, these days, there are plenty of ways we can live a life worth living, as assistive devices, rehab services and individual manners of treatment can help you eke out the best of your life. 

Community and Support Networks 

As people with MS and its related (dis)abilities, we all go through challenges and experiences we sometimes want to discuss with people other than our loved ones. Fear not, because we are blessed with an MS Society that will pick you up when you need them if you want to find out what benefits you might qualify for or if you'll find out details about mental health services.  

Advocating for Awareness and Support 

As straightforward or complex as you find your life with MS, do not suffer in silence. It is an illness that places a hefty burden on your body, so don't be afraid to ask for help. You are not alone.  

If you want to find out more about Willeke or her blog, Ireland, Multiple Sclerosis & Me, go to irelandms.com  



The views and opinions expressed here are those of individual contributors and do not necessarily reflect the views of the Multiple Sclerosis Society of Ireland. Whilst every effort has been made to ensure accuracy of the information provided, the editor is not responsible for any error or inaccuracy contained herein.
If you have been affected by any of the content, please contact the MS Ireland Information Line on 0818 233 233

Comments

Very wel written blog. With all our issues around MS & life.
I find myself now living back in South Africa. Where one has to literally pay for every little tablet yourself!

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