I know my posts are very few and far between at the minute but I have a diagnosis and I am feeling more like myself. I thought I would share it with you as there is very little is known about this rare disease. So, what is this fun thing I have called… it is idiopathic anaphylaxis.
If we break it into its components, Idiopathic means “cause unknown” while Anaphylaxis means a severe, potentially life-threatening allergic reaction. Here’s a definition “The patient develops an anaphylactic reaction without any form of trigger. This can be dangerous, as patients can spontaneously develop anaphylaxis without any warning”.
One little glimmer of hope with anyone who gets diagnosed with idiopathic anaphylaxis and that it can be an episodic disease as you can have a load of episodes then have nothing for 3 months, 10 years or never again in a lifetime. I don’t think this needs to be said but I am never having an epi-pen out of reach for the rest of my life and I am okay with that.
This post isn’t to be oh woe is me this is a very rare disease and I would like to help raise awareness. If you have this, please know that you aren’t alone and that Allergy UK is there if you want to talk about it or even just unload, it’s a lot to take in. Search engines tend to bring up very little or articles that are unreliable or in full doctor garb. I was lucky that despite its rareness I have a friend who is a fellow idiopathic anaphylaxis sufferer. She has been beyond helpful not only in helping me understand what's happening but has also helped calm Mother Goose’s nerves about it all.
The past 7 months have been an absolute whirlwind. I have gone from a fully independent strong spontaneous woman to someone who can’t leave the house without a backpack and a plan. I would be lying if I said I wasn’t scared of having an unknown allergy that can kick my ass whenever it would like. Let’s not pussyfoot it’s terrifying! But things are starting to ease up and I think I am out of my episode (I’ve jinxed myself now, haven’t I?).
I know one of the more reliable allergy triggers is citrus. You honestly wouldn’t know but that little cow is everywhere from sodium citrate in most juices, lemon flavouring in pink smarties, limonene in fabric conditioner to hidden notes in perfume. All I have found out the hard way with an epi-pen in my thigh. But then you have the odder reactions for example quavers? And Oreos? Toothpaste? Waking up in the morning to swollen lips? There is no logic at times.
You can skip this paragraph if you don’t want a little soppiness I don’t mind. I have personally found it rather hard learning how to cope with my body betraying me. That’s honestly what it feels like I have gone from being able to order whatever I want food and drinks wises to worrying if a trip to the shops could cause a reaction. Also, how hard it is to not just physically recovering from an anaphylaxis reaction but facing the reality of how easy it is to possibly die. It's morbid but it's sadly true. The effects on my heart, adrenaline glands and body in general was horrific and scary. But here I am still standing and slowly getting back to my old self.