That one day that changed everything
Robert: I just started my career as a Chartered Accountant, in London, enjoying life in the city. Until fatigue, the ugly beast and mobility issues meant I had to leave work, and the predictable income it gave, to return to the sanctuary of my parents. My income was now DPMA (Disabled Persons Maintenance Allowance) of £57 per week down from ST£230 in London.
Willeke: I had a stressful job which I loved, and I also just started a part-time degree in psychology. But, after five months of misdiagnoses of non-existent ear infections, I was eventually diagnosed with MS that include trigeminal neuralgia (TN), severe fatigue and other sensory symptoms.
Robert: This was a turning point, as I now started a life of self-employment. I was back again, earning, and its success or failure was in my own hands. The business developed, and this time I was feeling the effects of Relapsing Remitting MS. However, my income was good and it was able to support a new home, wife and children.
Willeke: Like Robert, success or failure was now in my hands. Thankfully my mobility wasn't impacted, and despite horrendous facial pain attacks and fatigue, I wanted to stay in Ireland. My employer allowed me to work from home which had a positive impact. Sadly, however, after a 3-year period that started with my MS and superbug diagnosis, five family members passed away. The emotional magnitude of this eventually took its toll.
Robert: Physically, I went through a 10-year remission of symptoms until, five years ago I was in a car crash and the beast returned, slowly at first. The accident added constant pain on the right side of my face, a bit like trigeminal neuralgia. This robbed me of my ability to earn, and I had to return to a State payment learning to live on a small income has been challenging.
Willeke: As anyone with MS and/or trigeminal neuralgia knows, the only predictable thing about it is its unpredictability. My income was also gobbled up by medical and work expenses.
Time to act, drastic even
Robert: No longer are the impulse purchases possible and I learned to avoid unnecessary expenses, focusing on maintaining my health focusing not on things, but on feelings, emotions, the fabric of life, which are more valuable. Small things become significant, and the treat of a purchased cappuccino becomes notable.
Willeke: Meet your sister, Robert! Coffee, the one drink that can turn bad days into acceptable ones. When it became clear that my body had enough, I was 36.5 and my professional life was over. Still, retiring was the best decision I made because life is like the Mastercard ad, priceless.
Evolutionary theory, not so much...
Robert: I find it interesting how we adapt to new circumstances, as my mobility and head pain worsened, I realized work was no longer an option. The thought of losing my income was scary. How was I going to pay for rent, doctors’ bills, food, car, insurance, and all the expenses of life? This pushed me to apply for Disability Allowance (DA), and with it came a stable, although low and means tested income. I also got the Medical Card, so my doctors’ bills were covered and instead of stress, I had stability.
Willeke: People are far more resilient than they give themselves credit for, but that’s something they will only be able to gauge after a good while.
Robert: As the DA is means tested, my income wasn't enough to pay my bills, leading to dipping into my savings and my rent allowance application was denied. Leading to more worry and anxiety than I could live with. Things recovered when I got a Patient & Public Involvement post for one day a week in NUIG. It took the pressure off but I am wary this bad time could happen again so I applied for the Invalidity Pension, something I probably should have been on from the outset.
Willeke: Certain habits need to be adapted, unnecessary ones cut altogether, and you do go through a stage where you wonder if MS will keep eating away at you until you have nothing left. A medical card doesn't give you your life back, but it does soften the blow each time you walk into the pharmacy to collect your big bag of monthly medicines.
Money makes the world go around
Robert: Money is key to living in our world. It is when there are variability problems occur. The removal of stress from our lives helps to maintain a stable disease, and when this path becomes rocky our symptoms increase. The quantum of money we have each week does have a floor, as the social welfare system in Ireland guarantees this. It is just possible to manage a life on this basic income, if we are careful, but it leaves no room for any extra therapies which might help the course of our illness.
Willeke: True! I've developed a rather philosophical idea though about money, one that says that nobody can put a monetary value on life, love, health and how many days we have left. To quote Charles Darwin when he talked about survival of the fittest, "It is not the ones in best physical shape that survive, but those better adapted for the immediate, local environment."