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.
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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. Especially as our context changes so quickly, soon enough those small ones will be at school and will need me in a totally different way.
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).
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