I was (still am?) one of those people who believe that thorough planning is needed for things to go as smoothly as possible.
Blame it on my INTJ personality type ( https://www.16personalities.com/intj-personality ) or having Monica Geller as favorite Friends’ character.
At some point in time, I grew convinced that proper schemes, schedules and preparation would allow me to not only make the most out of every situation, but also to stay safe- yes, safe. That I could anticipate every little thing which could go wrong and equip myself to face it. That I would feel confident and at rest, enjoying peace of mind from knowing that everything was going to turn out fine because I was prepared.
And of course, it was just the opposite. I was perpetually anxious about not being aware enough, not getting enough done or not meeting deadlines which I imposed myself.
Somehow, and fortunately, living with lupus is progressively challenging the control freak in me.
For a start, avoiding stress is an important part of preventing flares. I had to let go of useless responsibilities, learn to ask for help, and discover that things don’t need to go exactly as planned for them to turn out awesome.
Most importantly however, was the understanding that I was dealing with a completely unpredictable disease, “a volcano”, as my doctor sometimes call it.
No matter how hard I try to figure it out, a lot of things remain a mystery – hours of Googling would still yield results such as or “It is assumed that…but no study proves…” or “More research need to be done to determine if…” or “…still remains unknown” .
On a day-to-day basis, I try to maintain a lifestyle which will minimise the frequency and severity of flares. But there’s a limit to what I can control and I can never know for sure how I’ll feel on a specific day. If one day my energy levels are at a peak, I might as well have to stay in bed the next. I make weekend plans knowing that I’ll possibly have to cancel them at the last minute.
In the long run I don’t have faintest idea about how the disease is going to evolve. Will I develop complications? How am I going to be in 6 months, 1 year, 5 years? No clue.
All this was extremely disarming and I still often feel frustrated or vulnerable. On the bright side however, it taught me to live for the moment in a way that no #millennialwellnessguru could ever have. The only thing I have for sure is now, and I’m learning to lean back and enjoy the freedom which comes from the absence of control.