But then friends started saying that I was “slowly turning into a blonde”. Physical discrimination on the basis of hair colour aside, I felt they had a point. Concentration skills went from hero to zero. Walking from the couch to the fridge a massive undertaking. In tears in front of the staircase after work because I had to sleep for an hour before being able to scale its height.
In short: I knew I was ill.
It turned out I was ill.
I am still ill. Those friends now add scary adverbs like ‘seriously’ to ‘ill’ when they describe my condition.
Almost ten years to the day of diagnosis, and five years after retiring, I am now a permanent ex-library assistant and a permanent ex-Incident Coordinator. I loved both titles, jobs and challenges, but when each effort turned into Herculean tasks, it was time to become an ‘ex’.
Overall, early retirement has been a blessing. Mentally it can turn into a battle between wanting to do things, but being unable to physically. So what do you do with all this free time? Do you feel sorry for yourself? Or do you say, “I may have a neurodegenerative illness, but I simply won’t let it get me down!”
Only downside of being this positive? Others asking why I’m not negative about my illness, early retirement and so on!
To answer their questions why haven’t jumped of a high building yet when pain is chronic and often beyond normal? Relaxation and sleep, tenacity and loving life. Against all odds, early retirement really turned out to be a blessing in disguise.
Being in bed and watching the ceiling 24/7 and seven days a week is not for me. Having a restless mind in a restless body, I went back to my first big love in life: books.
Reading turned into writing.
Writing turned into advocating and lobbying, annoying those in government to push for reform or set up badly needed neurological services in Ireland.
Advocating lead to more writing once again, but this time for others. It’ll never make me rich, but I knew I was on the right track, with brainstorming sessions at MS society meetings and conferences. I may sound like a broken record, but speaking up for those who don’t have a voice is infinitely more rewarding than any paid job I ever had.
It might just as well turn out that I cannot change to newer medication, but being permanently retired is not a drama anymore. After all, I can now jump in bed whenever I feel I need to, something I couldn’t do while still employed, and when I feel pain is increasing again, I jump in that very same bed again.
A new chapter in my life is now taking place inside my mind, as a book is slowly being written in my head. It might take years before being published, but who knows…
Until then, I am just a happy ex of sorts.
Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.
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