This year I have chosen self-care as my word of the year but I am not talking about the more obvious types of self-care – like having hot bath, going out with friends more, having a massage or a manicure. Sometimes self-care can involve pushing ourselves to do things that are truly good for use but things that we may find difficult.
I have always pushed myself to achieve. I was diagnosed with my first autoimmune disease in 1988 at 25 years old. The fix seemed relatively simple – just take some medication each morning, have periodic blood work. For the most part, this worked except for the few times that the condition spiralled out of control and it took more work to get my body back in balance.
In 1995, at 32 years old, my next autoimmune disease began. I took a large contract and I was the only provider of the training and assessment. I caught a virus during a 6 week period where I worked 16 to 18 hours per day without having a day off. By the time I finished this period, I was very ill and I just did not recover. I didn’t stop working though, I spent my days off bundled up on the settee and powered through the work days. Physically, my symptoms got worse. It took a year for me to be referred to a specialist who did not give me a firm diagnosis and in 1997, I improved as my condition went into remission. I did not know that this was my first flare of systemic lupus.
I had three miscarriages and was diagnosed with a new autoimmune condition in 2000 and pursued treatment which led to me having my son in 2002. All this time, I worked 50 hour weeks on average and often collapsed during my time off – sleeping most of my free time away. Within weeks of my son’s birth, I was extremely ill and when he was 6 months old, I was diagnosed with systemic lupus. Within a year, I had an additional autoimmune diagnosis and in 2018 I added one final autoimmune diagnosis to my collection.
I refused to ‘give in’ to these diseases. I didn’t live with them – I lived in spite of them. I researched treatments, was (and am) an active participant in choosing what treatments I would use in order to manage these conditions so that I could have as normal a life as possible. I still worked full time and rarely had to take off work for illness though I often needed to sleep on the weekend.
My doctors always told me to reduce stress and often said I needed to pace myself and to rest. I laughed. I could see no way to work less as that led to stress around finances. I was never very good at resting. I often worked through holidays. I love what I do which made it even harder to do less.
