Acute Disseminated Encephalomyelitis (ADEM) Support Group

“ADEM anniversary”


#1

Today Is my 4th “anniversary” since getting ADEM.

I don’t remember being too emotional or affected by it the last 3 years but this time it’s really getting to me.

Anyone else affected by their “anniversary”? Or is it just me?


#2

My daughter, who had the ADEM, often talks about the people she met along the way from December 2016 and puts on a cheerful and positive persona, but it’s me the mother who gets really upset at the anniversaries recalling stuff she doesn’t because she was quickly going into another world whereas we parents were watching every little thing. But there are times when I feel she has put too much into her work and suffers more from the fatigue so perhaps this is a smokescreen. I have suggested some mindfulness when this happens. Gentle Tai Chi Qigong helps, even the chair exercises, along with the gentle music can make a difference.


#3

Such interesting timing to see this thread… we are doing a few follow-up tests this week and I too am being trigged by when my son got ADEM in 2013. He continues to suffer from fatigue, headaches, emotional ups and downs, and it’s just so hard to remember and let go of. Good to know I am not alone.


#4

What changed for you this year?

I use it as a time to review my goals for the previous year and set goals for the year following. I don’t like to think any more about it.


#5

While this year will only be my 2nd ADEM anniversary, I am less affected by it then my family and friends. I Just have to keep moving, no matter what i have lost. I just keep repeating the old saying “Fake it Till You Make it”.


#6

what i have lost repeating the old saying “Fake it Till You Make it”.

You got me really curious what you mean. It is a big topic for me right now looking back at my recovery.


#7

To others I will say it means; have a goal and stick to it. To me personally, it morphed over time to mean; you can do anything no matter what anyone says.