Meeting Myself Where I'm At
One of the agreements I’ve come to with myself around my move is to meet myself where I’m at.
When I lived independently before I had no true concept of pacing, or of the damage I was doing to myself physically when trying to push through the pain of my slipped disc to just keep going. Trying to cook, clean, shop and care for myself took an enormous toll when I wouldn’t accept help, or even the notion, that I just wasn’t managing anymore.
A decade on I’d like to think I’m older and wiser …
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ME/CFS Awareness
28 September 2015. When I look at this photo all I can see is the sheer exhaustion I was feeling at the time, not fully understanding why it was something that seemed to seep to the very core of my being.
I was 2 months post-op at this point, my body having undergone trauma as my femur broke after surgery, which then required further surgery. I was on a number of pain meds, including morphine. I thought it was just taking a long time for my body to recover, adjust to the meds and for my energy levels to come back up.
By Christmas I was falling asleep literally sat upright and mid-conversation with people and something didn’t feel right. I’d had 24 years worth of experience in operations, strong medication and post-op recoveries by this point and this was just … different.
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The Joy of Books
I thought it might be nice to have a bit of levity and focus occasionally on the things I’m finding cheering and joyful, rather than lots of resources and things for you to be *doing*. Some of my earliest memories are of books and they have been a constant source of comfort, hilarity, tears and happiness throughout my life.
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Toolkit - Managing a Flare-Up
When I posted recently on Instagram about throwing my back out and putting my flare-up plan in place my thoughts halted. What do we even mean by flare-up? It’s a phrase used so often but do people really understand what it means? And what the heck is a “flare-up plan”?! Let’s dive in …
My pain management programme defined a flare-up as being your usual pain, with the volume turned up to the maximum - not new pains or signs of a new injury.
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Toolkit - Understanding Pacing in Four Simple Stages
Given how overwhelming pacing can be to tackle I have broken it down into four key elements: WHAT it is, WHY it is so important, HOW we can do it, and WHEN we should be doing it
Taking it step by step, this will hopefully demystify the process somewhat and make it easier for you to see which of the areas you need to tackle - it may be just one key element that’s missing or you may need a review of all of them, it’s all okay, you start where you need to.
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My Journey with Pacing
It took until I was in my late teens or early twenties before the concept of a ‘boom and bust’ cycle became part of the pacing vocabulary, and although the idea was talked about theoretically that doing too much led to me doing too little, all that really amounted to was trying to make sure I didn’t fall into the trap of doing absolutely nothing on recovery days. Ideas such as baselines were still not in the picture and I was still clueless about pacing my actual activities.
In all I probably spent about fifteen years trying to figure out pacing on my own: no small ask!
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Lockdown Loneliness
It hit me hardest during my first week of self-isolation. The sudden realisation that when all this is over and some sort of “normal” life resumes, people will be back out there, going to work, socialising and filling their days again. As things currently stand though, this is my normal. And I’m really lucky – I’m pretty mobile these days, actively job-hunting and looking forward to changes that will soon see me less housebound. But that day the weight of the realisation that this is actually all pretty standard for me was crushing.
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Managing Medications for Pain Relief
What actually prompted this post is the fact that a few weekends ago, I ran out of two of my pain meds. I messed up and so did my GP in changing the quantities I was prescribed, which unfortunately I didn’t catch in time. I had 3-4 days of withdrawal effects as I was essentially going cold turkey – never, ever, ever recommended. It took the better part of a week to get back to ‘normal’; however one thing I did note was that I had absolutely no increase in pain levels.
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My Breaking Point and Mental Health Recovery
In the summer of 2013 I was nearing the completion of my Masters in Art Museum and Gallery Studies at the University of Leicester. In theory it should have been one of the happiest times for me … Getting back to studying in 2012/13 was a dream come true: I loved my course, I made some great friends and having improved somewhat physically was able to have some kind of social life again.
What I kept hidden from all but a handful of people was the true cost of that “progression”. Studying full-time was the hardest task I had undertaken in a long time: it drained me, physically and mentally.
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Overcoming Fears and Self-Doubt
The year definitely seems to be speeding by and so much has happened since my last update. On the one hand there have been a few events I have been to that have been infinitely inspiring and strengthened my resolve and desires to see this blog grow into something much bigger; on the other hand I have spent most of the last four months crippled by self-doubt and writers block.
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