Aisling’s Story

I was diagnosed with encephalitis in October 2018 after I gave birth to my second daughter (I’ve two girls aged 2 and 3).

It began with headaches, hallucinations (I was jumping out of bed as I thought I was seeing spiders) and, after that, I started having panic attacks.

At that point, I thought it was post-natal depression and was put on medication.

I developed double-vision and became scared walking down the stairs, but I carried on as I thought it was still because of post-natal depression.

My optician referred me on to an ophthalmologist for my piece of mind and as a precaution because I was still driving at this point. They said it could be something vascular, so I had to go to the doctor for blood tests. My husband and I were naturally very worried, but the tests came back clear.

I then started walking and holding onto the walls. I told my family I felt like I was walking like John Wayne!

My Mum, Dad and my family were really concerned at this point, so I was taken to the doctor who referred me to a neurologist but said if I felt worse, I should go to Accident & Emergency.

I did feel worse and so I went to hospital for an emergency CAT scan. It came back clear.

Once again, my husband and family were baffled.

I then started seeing blue spots, the double vision became worse and it was clearly affecting my mobility.

Within two days, I went to eye casualty with my husband. They carried out some tests and, after a long wait, a neurologist tested me and admitted me to the neurological ward. I walked in and once I was in, I could do no more and ended up in a wheelchair.

The next day I met my lovely consultant and lots of other lovely nurses and doctors. My speech really started to slur, it felt like my tongue was too big for my mouth.

I had countless MRIs and Lumbar punctures. I was pumped full of vitamins and high doses of steroids. I then moved onto oral medication a few weeks later. I remember the physical therapy was so hard that I could barely stand up.

I can’t remember a lot of things from this time, so I rely on my family to tell me.

My consultant diagnosed me with autoimmune cerebellar rhombencephalitis.

After two and a half months in the hospital ward, I learned how to wash and dress. It was difficult as I developed a bad tremor in both my hands and fingers (ataxia).

I also began to see a psychologist and psychiatrist as I was afraid of my children picking up a bug in the hospital. They also discovered I had OCD as I was putting antibacterial soap on the door handles. I had a range of cognitive issues.

I was then moved to another hospital for another month of rehabilitation. I had intense physio and Occupational Therapy but, again, all the doctors, nurses and cleaners were lovely. I had art, music and other types of therapies which helped.

I made a lot of friends in the first hospital and some were moved to the same hospital as me so I got to visit them. I saw the physiologist and psychiatrist as I still felt I had to protect my children.

I got an overnight stay at home, while recovering in hospital. It was great to be reunited with my children at long last. My youngest was only seven months old. I lost so much time bonding with them.

At home, my husband and family had been working with the community brain injury team and they were fantastic. They set up a care package for me. I was home for month, but then had a relapse and ended up back in the hospital for another two months.

Over that year I was in and out of hospital, there was no more damage just mentally to both myself and my husband. He took a career break, but unfortunately, just before lockdown our marriage ended.

Naturally, I was devastated. I’m currently living with my mum and stepdad. I have a better relationship with my children and my consultant sees a massive improvement in me.

I am on very little medication now and my consultant is hoping to wean me off steroids. I’ve started a day centre and I’m on a programme that gives you vocational training with a view to vocational work.

I’m involved with another community team who provide floating support, so they have set me goals. I’m interested in the social aspect. I’m also involved now with two other community support groups and they’ve been so helpful enabling my new life. I’m positive for the future and so fortunate to have good friends and family who give me the love and support I need.

I couldn’t do it without them.

Aisling