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A Confession on Pacing and Boundaries with Fibromyalgia

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.

A confession on pacing and boundaries with fibromyalgia

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.

Other posts you might like:

My Low Dose Naltrexone (LDN) for Fibromyalgia One Year Experiment

Natural Pain Relief: Supplements for Fibromyalgia Energy

Living the Best Life with Fibromyalgia: A Book Review

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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The Power of Planning

Boundaries are a difficult business to negotiate when you have chronic pain and fatigue. But when you’ve spent the better part of a decade battling against your own body and managed to make some headway, you need to hold on to them tightly.

It’s me who pays when I overdo it.

I try to prepare for the fact that my new job will make me more sore and tired. It’s taken two weeks to come back from an intense flare after three months at an unsuitable job. And that job was easy.

My new job will be more intellectually demanding. I can’t even find the vocabulary to adequately explain the pain that will come from the physical situation an office job requires, the fatigue, and the cycle of pain and fatigue boosting one another.

The other day, I knew that I could manage walking to and from the park or walking around in it. After some negotiation with the husband, we walked to a closer park. Upon reaching it we decided to explore the walkway as we hadn’t been there before. It was a nice, ambling wander that turned out to be an hour long by the time we got home. My legs ached that night, which was a bad sign as I usually pay for things the next day.

And I did. My legs were so tight by the following evening that I had to sit with my heat pack on various parts of my legs, my knees were aching to a point where I wanted to cry and couldn’t put weight on them. I spent 15 minutes stretching them out gently. Then sat with my legs up for the rest of the evening, when I had to get up I had to hobble. The morning after it had receded back to a slight ache and tightness level.

I am trying to build my new (hard earned) awareness into my thought patterns. I can make a difference with forward planning. When I try to talk it through with my husband, it is part verbalising and working through it and part getting him on board.

Being able to plan, feeling in (some level of) control is an amazing feeling. I love it!

So what I ask, and what I hope for for anyone else with fibromyalgia or any other illness that imposes limits, is that people will accept our boundaries. Especially when they know that they are carefully considered.

I can guarantee you I have thought about the costs and benefits of a decision. I can guarantee I have included my baby and my husband (and my responsibilities to them) in my decision making. I can guarantee I have included some boundary stretching (on my terms) into my process.

This is my life, my consistent struggle against pain and fatigue, all I ask is that my boundaries are respected.