It’s been five years since I found out I have Pyroluria (also known as Pyrrole Disorder) and I’ve just made a video where I chat about what’s changed for me.
Update: I managed to somehow lose/delete the 5 year update video when I was re-arranging my websites and Youtube channels. 🙁 So I’ll re-write some of this post to fill you in where I was at the time of writing… And I’ll do a new update video soon.
I know there are a few people out there in internet land who have been following my journey (an many more people who are being diagnosed and learning about Pyrrole Disorder) and I’ve been asked how I’m going. I’m happy to report that things are going really well for me!
If you haven’t seen my earlier videos, the first video I made was just a couple of months after my Pyrrole Disorder diagnosis and you can find that here, and then I have an update that was made about two and a half years ago. You can find that update here.
So as you’ll see in those videos and posts, when I first started on Pyroluria supplements, it was a bumpy ride. It is for many of us – some more than others.
In my case, I was fortunate because I noticed an improvement in my Pyroluria symptoms, (mainly my anxiety, which was by far the most crippling) within a couple of weeks, and that gave me enough hope to carry on through everything else that was going on with me.
I believe that I noticed that change quickly because I’d done a lot of work on my gut (I talk a bit about that that in my pyrrole disorder two year update video and blog post).
Now five years on, when I look back at where I came from, I am so very grateful…
So What’s Changed For Me Since My Last Pyroluria Update?
Some stuff has changed. I’ve gone from someone who’s biggest challenge in life has been using my voice to being able to speak more easily.
I’ve had large chunks of my life where I’ve struggled to talk even one on one with people – even those in my family. The inner tension within me was almost unbearable, and well… This is the first time I’ve actually written about this – my way of managing it was often to excuse myself and go to the toilet.
Sometimes this happened multiple times in one conversation! I made excuses about not feeling well, or having a weak bladder, but I know that often people just thought I was a bit strange.
I’d visit the ladies, take some rescue remedy or just sit and calm down, and then if necessary, I’d go back to the conversation.
The Beginning Of My Own Personal Miracle
So what has happened in the past year or so is quite a miracle for me.
I joined doTERRA and started using their essential oils. I used them slowly at first, but soon realised they were very different and much more effective than any I’d used in the past.
I felt like I was addicted to them!
I just couldn’t get enough. I diffused them constantly, covered myself in various oils repeatedly during the day, inhaled them from the bottle and ingested some of them.
I couldn’t explain why, but they just made me feel good. I could feel that they were creating change and so I decided to share them with others.
I also after a few months began taking their Life Long Vitality supplements. I was skeptical at first and a little concerned that they might cause problems for me, which they did.
I started on a full dose and quickly started to have thyroid type symptoms. I wasn’t sure whether they were going to work for me, but because I was so in love with the oils and my trust for doTERRA the company had grown, and because they get such rave reviews, I decided to persevere.
So I stopped for a couple of weeks and then began again on just one product, one capsule a day and built up from there. I now take a half dose (2 capsules) of all three products.
From Struggling To Talk One On One To Talking In Front Of Groups
My decision to share these oils has seen me doing multiple essential oil classes a month. Talking in front of groups of people.
This would not have been possible for me 2 years ago.
No way! Not in my wildest dreams!
So stuff has changed. I still get anxious, but once I’m talking it settles. I use Lavender oil – The Oil of Calm Communication and Spearmint oil – The Oil Of Confident Speech, as well as others when I’m doing my classes and when I talk about my story, the people in my classes tell me they’d never know I had any issues with anxiety or using my voice.
For me this is a personal miracle, and although I was initially putting the changes down to the oils, I’ve realised after having to do without the LLV supplements a few times that they provide a lot of support for me also.
Update: At the time of posting this on this site, we’re in lockdown due to the Covid 19. I’ve not had any of the doTERRA supps for quite a while even prior to lockdown due to financial constraints. Even though I’m at home with what should be no real stress, I’m feeling the difference. 🙁
A Small Change In My Life That Has Created Change In My Pyroluria Symptoms
So, I’m still using high dose (60mg a day) Zinc Picolinate, and P5P (100mg a day) as these are the foundations of Pyroluria treatment, but I’ve stopped taking all the other Pyroluria supplements.
This is because I personally have found that since I’ve been using doTERRA essential oils and supplements, they seem to have provided me with support that really makes a difference.
Now here’s the disclaimer: I can’t say that whether anyone else with Pyroluria will get the same benefits as I have. Maybe – maybe not… And I’m certainly not saying that doTERRA products are curing anything! What I’m saying is that they are obviously supporting my body enough to gradually make positive changes that are changing me and via that, my life – literally.
Will they work for you? I don’t know.
If I hadn’t decided to put aside my beliefs about multi-vitamin type supplements, I wouldn’t be where I am, living with what I would dare to say are close to ‘normal’ levels of anxiety, and with the miracle that is my ability to finally be able to use my voice (which was once a dream) to speak to groups of people about things I’m passionate about. 💖
This is truly a miracle and a blessing for me. 🙂
I truly hope that my awesome results so far give you hope, because I know all too well what it’s like to feel hope-less. 🙏
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