The path I took
I wrote it all down
so I would not have to keep reliving it.
This is the place I send people to. What I changed, who helped, and in what order.
People have never stopped reaching out to me. Messages, comments and DMs. Past clients, people from the industry, people I crossed paths with years ago, and a great many I have never met at all. Word gets around.
I love it when people reach out, and I do not want that to stop.
What I cannot keep doing is reliving it, and it took me a while to admit that to myself. Every time I shared my story, whether that was a long conversation in my inbox or something I posted publicly, my body went back there. Not as a figure of speech either. The symptoms would sit heavier for days afterwards, sometimes longer. In my world that is called a flare up.
Eventually I started keeping track of it, because I did not quite believe it myself. The pattern was hard to argue with. The flare ups clustered around the times I had been telling the story. Every time.
That is part of why you will not find the words "I suffer from" anywhere on this site. I am careful about what I speak over myself these days. It may seem like a small thing to you, but from experience it is a big deal, and it matters. I mention it so the way I write about all of this makes sense to you as you read.
So this is what I did instead of going quiet. I built somewhere to send people. It is all written down here, once, and I can hand it to somebody without walking back through it. Read whatever is useful, leave the rest, and then come and talk to me about where you are rather than where I was. That is a conversation I can have all day.
What I have written down so far
In the order I came to it
None of these arrived as a plan, and each one came from a person who cared enough to say something to me. They are not the only things I have changed, not by a long way. There have been a great many others, some of them small, and I have no doubt they all count. These are the ones I have found the words for so far.
Where all of this started, and how far back it goes, is a longer story than this page. It is on my My Story page if you want it.
The team
The thing I would tell anyone first
Gather people around you, and do it before you think you need to
Build a team of trusted practitioners who work alongside your doctors, never instead of them. The biggest piece of it for me has been a nutritionist, and the single change that made the most difference was learning to test rather than guess.
The house
A friend rang, and asked me a question I had not thought about
Twenty years of being careful about what I put on other people's skin, and I had never once turned that attention on my own laundry cupboard. It took one phone call from a friend, at the lowest point I had known, to make me look.
How that went, and what I actually changed →
There is a whole vocabulary around this world, and some of it is faintly ridiculous. If you have ever wondered what a scrunchy mum is, I wrote a plain guide to the labels.
Bioresonance and PEMF
Something I already knew, seen differently
I had used this professionally for years before I ever used it on myself
PEMF was part of my working world long before my own health shifted. What changed was the angle I was looking from. Then I took a break of about six months, and that gap told me more than the sessions had.
STENDO
The one I was almost too sore to try
A treatment that does not need a therapist's hands
I cannot have a massage. With Fibromyalgia even the gentlest hands hurt, and my nervous system stays loud for a good while afterwards. So a treatment that works without a therapist's hands touching you at all was worth getting on a plane for.
Carnosine Gel
A clickbait moment, of all things
An ingredient I had never heard of, in a product not made for me
A sports recovery gel made for professional athletes, which I would normally have scrolled straight past. One ingredient stopped me, because after two decades of peptides I had never once come across it. I have used it every day since.
The ingredient list, my own three months, and the two versions →
There will be more
I have only started writing
This page will grow. There are other things I do, other people who have made a difference, and other bits of the story I have not sat down and written yet. As each one gets written it will appear here, in the place it belongs in the order.
If there is something you would like me to write about, tell me. Half of what is on this site exists because somebody asked.
If any of the words are new to you
Somewhere in reading this you may have come across a condition you have never heard of, or you may be holding a very new diagnosis of your own. I wrote the plain explanations I wish somebody had handed me, and they live on my What I Live With page.
Knowledge was what gave me back a sense of footing, long before any of the rest of this.
If you work in this industry
One person's whole path is worth more than five product pages
I have written this for the person who is unwell and looking for what somebody else did. But if you are a practitioner, I think it is worth your time for a different reason.
You will have clients in your chair who are somewhere on a path like this one, working it out in the dark, mostly on their own, and mostly from what a friend mentioned. Knowing how that actually unfolds for somebody is more useful than knowing five separate things about five separate products.
And if you want the professional conversation rather than the personal one, that lives on my For Practitioners page.
One more time, because it matters
This is an account of what one person did. It is not advice, it is not a protocol, and none of it is a promise about anybody else. Talk to your own doctor before you change anything.
I could not find this page anywhere
when I needed it.
So I wrote it.
There is more than I put on a page
I do not publish everything. Some of what I live with is personal, and there are parts I would rather say to a person than put on a website for anyone to read.
If you live with fibromyalgia, POTS or dysautonomia and you want to talk to me properly, come and find me. Choose “Living with fibromyalgia, POTS or dysautonomia” when you write, so I know what you are asking, and I will answer you myself.