Ten Years in Time

Ten years ago today I started a blog. I had decided now was the time to follow my long held dream of opening my own crystal shop. As part of that plan I aimed to write and publish a blog post every day for a year about why I wanted to and how I was going to open this shop.

Nine months later I opened the doors on RSL Collective. Twelve months later I finished writing with 365th post. I had never in my life been able to achieve that level of dedication and have never managed it since. I also did not appreciate at the time what I had signed up for. Every day – it doesn’t sound much, to knock up a couple of paragraphs of some kind of dear diary style entry – but I hadn’t counted how easily and frequently “life” gets in the way.

Looking back now it feels so unreal. M.E. was background noise for me then even though it had resurfaced in 2012 after a period of what felt like dormancy of over ten years. It had raged for a year and a half then calmed, settling again into what I would now classify as very mild ebbs and flows. I could work part time and then I could chart a new course.

I read through a few of my old posts today. The enthusiasm, exuberance, plenty of waffle, the very-present confidence in the objective truth of my belief system that would spill into arrogance. A belief system so tested and upended in the last few years that it makes no sense to the person I am now. Even my view of M.E. was so badly flawed that I was extolling the virtues of my exercise therapist and referring to “chronic fatigue”.

What I didn’t know (and the jury is out on whether I could have known) was that I was a recovery story destined to become a cautionary tale.

I didn’t know that ten years later I would be typing this wearing indoor gloves to protect me from Raynaud’s flare-ups, with my damaged neck supported by cushions, legs up on a stool clad in compression socks to support my heart rate, nibbling on a gluten-free snack to prevent gut inflammation and severe stomach pain after dropping two stone in a year from gastroparesis. I didn’t know that what I thought was M.E. was not even the tip of the iceberg, to the point where fatigue and tired didn’t even make it onto the list of my top ten symptoms. I did know M.E. had levels of severity but after living with the condition my entire adult life I didn’t think it would be able to shock, surprise or terrify me. Until, that is, mid 2021 when it came back with a violence that literally took my breath away and metaphorically cut me off at the knees. Hell hath no fury like a neuro-immune disease scorned.

So I debated whether to go back to my old posts about M.E. and change them. Even thought of taking them down. But I decided to keep them as they are. It was who I was at the time, with the knowledge and experiences I had had, how I chose to interpret those into my beliefs, and how I put those beliefs out into the world.

It’s not very comfortable to read or keep out there in all their ignorance and quite obvious hubris, but I did occur to me that they might serve a useful function. As whilst these posts were not written as a recovery story, nor as a definitive take on a medical condition, they are a reminder, that telling your tale of recovery could come at a price. A price you hadn’t expected to pay and still be paying.

I don’t want to finish this in such a gloomy state so I will sign off with my intentions for a new story for the next ten years, with the same enthusiasm of hope I had for opening my shop. A time when there is better medical care, trained and knowledgeable doctors, nurses, and specialists, effective pharmaceutical drugs allowing people to have a better quality of life, support in hospitals, in the community and at home for people with the severest form of M.E, and a time when those that seek to push their outdated treatment are long gone from the headlines. (Weasely who? )

And for me, a time when I have managed to write, maybe not every day for a year, but any day that I can.

Love and light, Kirstie

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If you or someone you know are dealing with M.E. or any undiagnosed symptoms of lack of energy, pain, brain fog etc and need some guidance please do reach out below or on Bluesky.  It can be alarming when this happens especially if you cannot express what is going on inside you.  Please know that whilst it can feel isolating you are not alone.  There are thousands of us, millions worldwide that understand what you are going through. 

If you have Long Covid, continuing symptoms after a covid infection or curious about how you can keep you and your loved ones safe from ongoing infection, I also recommend checking out Long Covid Advocacy who have tons of resources as well as excellent articles drawn from lived experience.