Anji was diagnosed with Acute Disseminated Encephalomyelitis (ADEM) and shares her story here.

When I was 41 I had a regular cold and chest infection and thought nothing of it.  One day I woke up feeling ‘drunk’ even though I had only had 1 glass of wine with dinner the night before.  I brushed it off went to work and was feeling ‘full of flu’. I even got in trouble as my boss thought I was drunk.  I eventually went home slightly staggering and extremely tired.  I went to bed and therein begins the full story.

I awoke and intermittently struggled to move my right leg and had to really think about how to swallow, kind of like when you have tonsillitis and you are preparing for the razor blade feeling.  I was staying with friends who thought I was having a stroke and took me to hospital for assessment.  Things continued to deteriorate as the day went on and early hours of the morning I could no longer walk, talk, or move my right arm.  Panic set in.  Then I remember being transferred to another hospital by ambulance at approximately 2am.  I was in and out of consciousness but remember the ambulance man asking me questions and I remember thinking why?  I can’t answer you so just stop!  When I got to the hospital my consultant was there waiting.  From here I remember very little for the best part of a week while they ran every test known to man twice!  Every day the consultant would assess me to see if I needed a high dependency unit.  I was given a course of steroids which helped but then I became the subject of many learning/teaching exercises for student doctors. Apparently, ADEM was rare in adults and primarily presented as a stroke. I gradually recovered enough to go to a bay away from the nurses station.  Communication was hard as what I was saying in my head was not what came out of my mouth.  However I could swear for Britain!!  Rehab was slow and awkward.  I struggled to control emotions (still do) and my laughter almost got me thrown out of hospital twice!  I eventually went to stay with my friends in their adapted house as I needed to see where I needed help most.

Fortunately I never realised how poorly I was and my goal was to just get out of hospital and back to ‘normal’ … I now have a new normal.  Once I moved into my own ‘wardened’ flat I started to make goals.  The first 5 years were the hardest, like being a child again, I had to learn to eat, talk, walk, dress, shower… absolutely everything.  After that time, I made new goals… to run/walk 5k, 10k half marathon, marathon, tough murder, swim the equivalent of the English channel … ADEM WAS NOT WINNING … I completed all of those in the next 6 years but never without pain, exhaustion, frustration or tears.  I had an amazing couple of personal trainers who really had to think outside the box to get me through the challenges I had set myself.  As time went on I had surgeries and further issues which I had always ‘managed’ before.  I tried every device known to man for help with my dropped foot, some worked some didn’t but eventually I had it fused which brought new issues.

I have many residue effects from ADEM but life goes on and just living with them and doing everything anyone else does just maybe slower or differently is the aim.  I am now left-handed and have an assistance dog who helps me with spatial awareness and retrieval of anything I drop, taking socks off, getting things for me, helping with the washing.  I still struggle with eating and not choking especially when tired. I no longer form normal relationships.  I seem to have lost the ability to form those ‘close’ connections with people.  It goes across the board from ordinary friendship to romantic relationships… I just don’t feel it !! I can cut people out my life in an eye blink… I was never like that pre 2007.

My life has changed dramatically and I’ve had highs and lows but my aim is to continue to live and function, with a bit of help, in a positive way wherever I am.

18 years on I can say ADEM didn’t beat me.

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Story published November 2025