May I confess something to you? I don’t always practice what I preach. I don’t always realise or acknowledge my boundaries, let alone fight for them. I let guilt eat at me and let it trick me into over committing.
I’ve had this growing sense that the amount of hours I was searching for as I seek employment now that my baby is nearing his first birthday were too much. After much internal struggle, I lowered the expectation in my head, knowing we need the extra money, but also that I would not be able to sustain it, my health and be a good mama.
For a long time, I prided myself on being a 60 on the CFS/Fibromyalgia Rating Scale, “Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms” despite pain levels more in line with a 50, “able to do 4-5 hours a day of work or similar activity at home. Daily rest required. Symptoms mostly moderate.” (My italics)
I pushed myself to 6-7 hours per day minimum and suffered moderate symptoms. I had missed the key as suggested in this article on understanding our situation: “What is the highest level of functioning I can sustain without intensifying my symptoms?”. If my pain is at a moderate level, then I should not be striving to work the hours of a person with more mild symptoms, especially given that I go home to two small children as opposed to being able to rest. You need to take into account your symptom level and your situation.
I keep myself in the boom-bust pain-fatigue cycle. Well, me and my circumstances – I have two small children and we have a mortgage in the most expensive city in New Zealand. We cannot move as this is the only place my husband can do his job. Childcare is not a cheap commodity, nor would I want substandard care for them when I am at work. As I move forward and go back to work now that I have had my second baby, I must learn to balance all of these demands. And that is going to be my life’s work – balancing life with the fight against the Fibromyalgia.
This year I have finally experienced a slight reduction in pain in my neck, this has enabled sleep to come easier. It’s been such a relief, I don’t want to give it up. But my work requires a lot of computer time, so that’s unavoidable. I can only hope that I can find the hours and position that will do the least damage.
But I will admit it is tough. It will always be a struggle, even if your people understood fully (which they likely don’t).