Ten years after diagnosis I admitted to myself that keeping up fulltime work was taking way too much of a toll on my health. Bye-bye pension, nice knowing you full pay-cheque, colleagues, stability, identity and financial security. It was a very difficult time, and I faced a personal crisis that most people only really do later in life on retirement, namely what is my purpose? What defines me? What will I say when someone asks you, “so, what do you do”? A few years later I returned to the workforce in a part-time contractual self-employed role in my former profession as a librarian-researcher and I’m loving it, but I fear for the future. I’ve no private pension, I don’t get paid sick-leave or holidays, and there is no certainty beyond the contract I have signed. I’m only as financially stable as my last invoice. At 42 I hadn’t expected to be still in this position!
There are of myriad of extra costs with MS. Secondary Raynaud’s syndrome means the heating needs to be on more, and I’m home more than most. Poor co-ordination, ever-present fatigue and severe heat-intolerance meant I needed an automatic car with air-conditioning, costing slightly more to buy, insure and run. I have to buy cooling products for the summer, high-intensity fans, cool-gel packs to put behind my back for the car and work and this year coming I think I’m going to have to invest in a special cooling vest. I haven’t even got to the point of needing house or car adaptations, that may be in the future for me. I take a very specific set of supplements too. I know these are complementary medicine, but I think they are a very important part of my wellness and they cost €60 a month!
I’m only touching on the most obvious of extra costs of living with MS for me. I’m sure that others will have many more. How does the economic impact of MS affect you?
I was really glad to see MS Ireland's research survey on Societal Costs of MS in Ireland because it's quantifying exactly what the extra costs of living with Multiple Sclerosis are. Please take some time to add your experience.
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