Making your own Fibro Manual (or Commonplace Book)

By Sarah Warburton

It was a gloomy November afternoon during lockdown 2 and I was idly browsing through some of the items in the British Library’s online collection when I came across the manuscript of the poet John Milton’s commonplace book.  Created between 1630 and 1650,  the book contains page upon page of handwritten notes and quotations on topics as diverse as politics, marriage and divorce as well as details of the books that Milton had read.  Back in 17th century Britain, commonplace books were a popular way for owners to jot down anything and everything, whether informational or inspirational in nature.

All of this made me think of my humble, red fibro folder which I call my fibro manual and how, in essence, this is my own version of a commonplace book.  My folder is not so different from the scrapbooks I kept as a child, although these were mainly focussed on either horses or the fortunes of Liverpool Football Club!

I’ve gathered reams and reams of fibro related information ever since I was presented with a handful of Arthritis UK leaflets by my rheumatologist during my initial diagnosis consultation which were duly read before being filed in my red folder.  Fast forward seven years and that same (now rather battered) red folder is full to bursting with the notes I’ve taken from the myriad fibromyalgia and chronic pain books I’ve read during the intervening years,  course materials from chronic pain and mental health classes attended, poems, physical exercise diagrams, recipes, information on natural supplements and even one line retorts that I can use in response to all those spiteful comments from fibro doubters.  In short, my folder has become my go to place for everything I’ve learned about fibro, my own personal bible, if you will.

So what are the benefits of creating your own fibro manual or commonplace book?

It’s a reminder of how much we’ve learned since diagnosis – I’d never even heard of fibromyalgia when I was diagnosed and so some of the information in my folder relates to basic facts, figures and management tips about the condition.  Reviewing this reminds me that I now have a lot of practical knowledge about living with fibro and that I’ve come a long way on my own health journey.

It acts as a pick me up when things aren’t going so well – now that I’m fully versed in life with fibro, this is probably the main reason why I pick up my red folder these days.  I find that 20 minutes leafing through the information in my folder does give me a boost, motivation when I sorely need it or kind words of encouragement that this too will pass.

It can give a quick hit of pertinent information – there is so much information about chronic illness available and not all of it will resonate with everyone.  Keeping what’s meaningful to us in one place means we can quickly access what’s relevant.

It’s a place for useful stuff for future reference – sometimes we come across information that we think will be useful but for whatever reason, be it time, season or finances, we can’t take further right now.  The commonplace book is a good place to store information for the future.

And finally, it helps with fibro fog – having a book or folder can help us to remember information or suggestions which we can so easily forget if fibro fog strikes.  It can also save us from leafing through pages of information, trying to recall where we read such and such a thing.

What could be included?

The bottom line is that anything and everything which you may find useful could be included, but here are some ideas to get started with:

•       Course / book notes – from any chronic pain management / mental health courses attended or books read.

•       Inspirational Quotes – these could be connected with fibromyalgia, chronic pain or not - anything that inspires you.

•      Poems – my own personal favourite which is so relevant to my life with fibromyalgia is Portia Nelson’s poem “Autobiography in Five Short Chapters”.

•       Recipes

•       Exercises – e.g. yoga for fibromyalgia.

•       Leaflets from charities / organisations supporting those with chronic conditions.

•       Magazine Articles – fibromyalgia crops up quite often in general interest magazines which carry health features and these can contain some useful information.

•       Information on associated conditions – e.g. migraines, costochondritis,  mental health conditions etc.

•       Goals – documenting goals can show how far we've come in our journey. Some of my first goals were, staying awake 2 afternoons per week and walking for 30 minutes, both of which I routinely manage these days but years ago, they were major challenges for me.

•       Things to research in the future – anything which interests us but we’re not able to pursue at this time.

The actual format of a commonplace book can vary too.  My folder is somewhat utilitarian in nature but I like to keep leaflets and printed sheets as well as as my own handwritten notes,  so wanted something with plastic sleeves to keep everything in one place.  But if you’re intending to hand write everything, then you could purchase a decorated book which feels special to use.

In short, there are infinite options for what to include and how to collect information about our condition and it really depends on what motivates and inspires each person.  For me though, the key benefit is having my own personal fibromyalgia handbook which I can dig out from the drawer knowing that I’ll almost always find just the words or pictures I need to give me a boost.

Sources: https://www.bl.uk/collection-items/john-miltons-commonplace-book