As we head into Fibromyalgia and ME/CFS awareness month (May). I thought it was a good time for an update.
I realised that I’d gotten a little too perfectionist about this blog and that was making it a burden. I had self imposed rules on what I could publish and therefore made it impossible to keep up with!
In the meantime I was sharing more informally over on social media. Except that the shelf life on social media is short. What a waste.
So I’m going to try some less formal posts and see how you like it. Tell me, do you like more personal update posts?
In preparation for awareness month I’ve done a few things.
1. I’ve created a 25% discount for The Foundations of Yoga for Chronic Pain and Fatigue (use the code FIBROAWARENESS) because this is the most practical way I can help you add tools to your symptom toolkit
2. I wrote an open letter for spouses to raise awareness for us – find it here
3. There’s several awareness raising posts going out on social media. Particularly around acceptance of our needs and helping us oppose the push through model.
It’s something I’ve been really meditating upon lately. The concept that we deserve accessibility so that we can do life without making our quality of life worse.
It’s the social model of disability, which I’m learning about thanks to my son who’s been diagnosed as autistic.
“The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people.” https://www.disabilitynottinghamshire.org.uk/index.php/about/social-model-vs-medical-model-of-disability
And this totally fits for us. I can participate fully if the people around me will allow me to make alterations to the way things are “normally” done. Obviously this could be an entire post on its own. But for now, I’m creating reminders for you and I. Then we are better able to advocate for ourselves and hopefully create a wider change.
I haven’t tried anything new in my journey vs Fibromyalgia and chronic fatigue syndrome. I’m honestly just treading water, waiting to see the endometriosis specialist at the end of May and then for my operation. The periods are out of this world bad and for much of the month I have some form of pelvic/low back pain.
Here’s a video update about that
It’s a weird situation as, of course, all symptoms are worsened by the endometriosis flares. Yet on the week or two a month it’s calm, I feel relatively good. My functionality alters so much it gives me whiplash.
I’ve made the difficult decision to take a leave of absence from work as I’m really not managing. It’s only with extreme flexibility I’m making it at all. But by the time one factors four children (one with a new diagnosis, all under 10), house, husband, life and health – the responsibility of my work is just too much.
My sympathetic nervous system has been on high alert. I’ve haven’t tolerated a full intramuscular needling session with the physio in months, and I need that to manage the trigger points. There have been occasions when my heartrate shoots sky-high and I’m not even doing anything much. So I need to put something down and enable more self-care and more space for my other responsibilities. One of which will be recovery from the operation!
Despite all this, I’m profoundly aware of how much better things are than they were. I’m thankful for the things I’ve found that help, so I’m no less passionate about sharing them with you.