THE JOURNEY OF AUTOIMMUNE ENCEPHALITIS ·JANUARY, 2020·

Nearly a year ago I was diagnosed with Autoimmune Encephalitis (AIE) totally out of the blue, my life was turned upside down, along with those closest to me.

It didn’t seem to be a common diagnosis and the doctors seemed unsure a lot of the time, and still do. It has been frustrating in terms of the support (or lack thereof) from the Doctors and Rehab team, due to waiting times etc and the lack of knowledge about this disease. This is not to say I wasn't treated wonderfully in hospital, I was very lucky with the doctors and nurses and can't thank them enough.

This is a record for myself as well as anyone else interested; and also a way to hear from others who are experiencing AIE or something similar.

I found once I was out of hospital that most people assumed I was fine - and even I did think I was until a couple of weeks later. It was frustrating when everyone else gets to go back to normal life and you are stuck in limbo.

I would love to hear anyone else’s stories and meet other people like me. Once you are out of hospital you realise the people that say they will do this or that for you actually can’t - they either have jobs or kids and most of the time you are on your own.

So share your thoughts and stories and hopefully I will find people fighting the battle just like me.

P.S. Click on the heading and link will take you to my Facebook page.

The Facebook Page I started first, but never got much feedback or followers so have been a bit slack lately, but it contains the general gist of my life. I will try and copy it over here, but am not 100% up on the blog life yet and how to write/embed/preview/publish and all those other words related to getting these words and pictures to where I want them.

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Since being diagnosed with AIE more than a year ago I have found it hard to find others in NZ who have it as well. Well I have literally found no-one with this exact disease and symptoms!

This is a record for myself as well as anyone else interested; and also a way to hear from others who are experiencing AIE or something similar, preferably in NZ as things are done a bit differently in US - reading the Facebook pages there are so many words I have never heard!

There are many symptoms that come along for the ride which a lot of people will unfortunately experience, though not being due to AIE, but due to something else. These include Seizures (Epilepsy); Memory Loss; Severe Anxiety; problems with Cognitive Functioning; Insomnia; Vision Changes; Loss of Balance/Weakness to part of the body; and Fatigue. Unfortunately the list goes on.

Hopefully my ramblings will show you that you're not alone. I'm just lucky in a sense that I only have some of these - I don't know what I'd do if I had the whole list of the effects of this illness.

The Facebook page I set up was also used as a concise record of the highs and the lows. I have so many journals it is ridiculous, so this is just a part of some of them. I thought if I put it online it could never disappear or take up space like my other journals, and self-help books.

I started this in January 2020 as a Facebook page, but could ever really understand how the pages worked. I couldn't see anyone who had followed my page, and I couldn't invite anyone who wasn't already my friend. I also learnt that Facebook is not the go to anymore! Got to get learning about Instagram - but the change I can remember from last using it until I tried to use it after hospital is crazy.

I am not a doctor, or even properly understand my diagnosis in it's entirety and it's effects yet, so please do not take any of my blog parts as medical advice.

You cant contact me the following ways (if not using the link above):

Facebook: The Journey of Autoimmune Encephalitis @AutoImmuneEncephalitisNZ.

Instagram: braininjourneynz

E-mail: braininjourneynz@gmail.com

braininjourney

I had to find a different name to my Facebook page (The Journey of Autoimmune Encephalitis) - so I thought of braininjourney (because all the normal pages were taken) and because I thought how cool - this can actually mean your brain being in a journey (which mine sure has been a still is!) as well as Brain Injury (if you say it real fast and use a little imagination!) - as this is what the page is all about, with AIE being a brain injury.

Thanks for taking a look!

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