The last year has been a slow but definite change in my illness and my outlook. At the end of 2015 I was managing my fibromyalgia, more or less, and struggling through a part time social work degree. This was part of my retraining after diagnosis, into a career I hoped I could pursue part time. Over the holidays I got a bad cold. Luckily, the first virus since my illness onset 5 years earlier. I recovered from the runny nose and coughing, but not from the constant fatigue. I had the worst brain fog I’d ever had, with trouble even seeing what was in front of me. I developed anxiety about being caught out during a brain fog flare, after becoming disoriented in a store and having to leave without paying. It’s scary to lose the ability to find an item in a store, figure out how to pay for it (without forgetting your pin code) and walk home.
Around this time I was supposed to be finding a practicum placement for my degree program. There was no way I was going to be able to finish the winter 2016 term, never mind commit to functioning 15 hours a week during specific hours. So I put school on hold. I worried I was back to having my life on hold.
Overtime I started blogging more again, connecting with other people living with chronic illness on social media. I took a health coaching course. I’ve considered many different ideas about how I could work from home. Recently it occurred to me that, with my prior experience in Korea, I could take a course to tutor English as a second language one on one, at my set hours, or online.
I’ve lost about five years of work experience and all my confidence in anything professional. It’s a combination of the uncertainty of my condition, of the horrible experience of slowly losing my functioning, and the fear of going back to the worst moments of my illness. How can I make a commitment I don’t know I can keep? Maybe it’s the fact I am a people pleaser and a perfectionist, but the prospect of that happening makes me very apprehensive.
Then there is the whole issues of expectations. In my life Before Fibro (B.F.) I was a graduate student, planning on working in international health projects as an applied anthropologist (like HIV/AIDS or malaria programs). I travelled a lot and wanted to live all over the world. Now, that’s never gonna happen. It’s something I am sad about at times, but I have mostly reconciled myself to. I try to move forward and plan new plans.
But I can hear the voices of a few family members who would not be happy about my ESL tutor plans. “You’re settling, and not living up to your potential” is what they’d say. Am I sure I’ve tried every avenue to make make my dreams a reality? Is it ever right to turn your back on your passions? Am I just rationalizing giving up as ‘acceptance’? Perhaps.
There is something liberating about finding a pathway that I CAN follow. I can volunteer tutor. Take an online course. Apply to online positions that interest me or advertise and accept students that I want to work with. Make my own schedule. Every other career option seems fraught with unknowns, like placement requirements I may not be able to fulfill.
There is the appeal of tangible accomplishment as you see students learn. There is very little that is tangible about chronic illness. Improvements in health fluctuate. Hobbies can definitely help to fill this void. I find doing calligraphy gives me a sense of accomplishment. Blogging too. But I still feel a gap that I want to fill, a need to contribute beyond my own personal life to improve someone else’s. I’m excited to volunteer tutor for the library, two hours a week. I think that’s manageable. Maybe it won’t go beyond that, into work. That would be ok too.
I’d also like to be able to contribute financially to my family, even if it’s only enough for a vacation. This is a side benefit though and not one I want to count on. Living as a couple on one income is a stretch but we’re fortunate we are able to. I’m just not able to work enough to make a big difference. But I would be really excited to earn a paycheck.
After beginning this post I came across a quote by J.K. Rowling (Albus Dumbledore):
“It does not do to dwell on dreams and forget to live” – J.K. Rowling
Living with chronic illness has changed my relationship to my dreams. I want to live now, based on my current abilities, rather then wait on dreams.
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