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My partner Chris was diagnosed with autoimmune encephalitis in 2016 and this is our story.
Monday, March 28, 2016 - Chris started getting headaches but went into work. He complained to me all that day about a headache and I said to him: “Take some tablets and have a rest. Hopefully it will go.”
Tuesday, March 29 - Chris still had a headache. He stayed in bed all day.
Wednesday, March 30 - Chris started being sick and complaining about his headache. He was in so much pain. I just thought it was a migraine. He stayed in bed all day again.
Thursday, March 31 - It got to the point where he was screaming out in pain. I called the doctor’s surgery and I had to rush up there to get him some tablets before they closed at 6pm – something that was made even more difficult as I had my three-year-old, Jorgie-Lea, and six-month-old, Preston, with me.
Friday, April 1 - 8am. The doctor called me. I said I can't Chris to the surgery because he can't get up. She told me to call an ambulance. I panicked and left a message with Chris’ mum. But by the time she got back to me, Chris had collapsed on the bathroom floor.
I was just in total shock and didn't know what to do. Chris's mum turned up and I got straight on the phone to the ambulance. It took the paramedics three hours to get Chris down the stairs and into the ambulance. The paramedic was amazing and very calm with him. At this point, Chris didn't have a clue what is going on.
To this day, he doesn't really remember anything of this point, which I'm glad about because it was horrible to see him go through this.
I don't know what happened when he got to the hospital as I didn't go with him. I wish I could have but I had to stay with the kids. His mum went with him though so at least he had someone with him
Saturday, April 2 - I went to the hospital. He didn't have a clue where he was or who I was. I asked him: “do you know that you have two kids?” He said no. My heart just broke. I thought I had lost him at that point.
Later, I told him I loved him and he said “I love you, too.” I looked at him and said, “do you know who it is? It's Heather.” He shook his head and I cried and gave him a cuddle.
It was weird because he was in and out of remembering things like he knew who I was but he didn't at the same time.
His brain would sometimes take control of his body. He would get out of bed and just stumble along the hallway, not knowing why and where he was going. He would lay on the bathroom floor. We guessed it was because it was quiet and cold.
You couldn't have conversations with him. He would just listen or turn his back on you. Sometimes, he would go to sleep or randomly get up every five minutes.
it was quite fascinating to see how your brain can just take control the way it did to Chris. It was like he wasn't there, like he was being controlled by someone in a computer game. Someone telling him what to do and what to say.
Over the days, he started to get his appetite back. As this was going on, Chris was still having steroids pumped in him.
He had lots of blood tests to find out what was wrong with him. Finally, they did a lumbar puncture and our doctor told us that it was encephalitis, a rare brain infection.
Chris's reaction was, “okay. So can I go back to work, tomorrow?” Chris loved his place of work.
The doctor said you won't be going back to work for quite a while and said that she wanted to do more tests on Chris to make sure what type of encephalitis it was. He was transferred from Basingstoke to Southampton.
When the MRI tests came back, it was confirmed that he had autoimmune encephalitis, a serious medical condition where the immune system starts attacking the brain. He had caught it through a viral infection.
Chris also had physio at Southampton. He hadn't walked for weeks and was still like Bambi, so he would just go for walks with the two physiotherapists. They were nice, but Chris didn't like going for walks because his anxiety played up so much. He didn't want to be around anyone as well. He just wanted to be in his own room and left alone which was sad because he is a very sociable person.
More days went passed and the doctor came round and told us how happy she was with Chris and how much he'd improved. She was happy to send him back to the hospital in Basingstoke and then, after a few more days, home to us.
Tuesday April 19 - Chris was home! The kids were so happy to see him. I was so happy to see him, I was bouncing off the walls with excitement. I had got my Chris back.
I felt like a nurse looking after Chris. I had to bribe him with a cheese toastie so he would take his medication! He hated taking medication he was sick of it. I couldn't blame him. He still didn't have a great sense in balance as he would be wobbling around the place but at least he was home!
He slowly got there in the end. He was on medication for three.
Just over a year later, Chris still suffers with anxiety and other emotions. He is seeing a psychiatrist and he's slowly getting there but he has come so far and I couldn't be any more proud of him.
I just wish we had more support from doctors after Chris came out of hospital and didn’t have to wait a year until we finally saw a psychiatrist. If we had, Chris may have overcome his anxiety and his other problems a lot sooner.
We joined the Encephalitis Society. They have sent us information about encephalitis which helped us get more of an understanding about it
I wish I could go into more detail as so much happened I could literally write a book! Chris has said he would like to write a book. He feels it would help a lot of people out there suffering or who have family members that have had encephalitis to get a better understanding.
The two things I have learnt with Chris having encephalitis is:
1) Patience. I had no patience whatsoever, but now I have a lot. Without patience, everything would have been so stressful. I'm going to be honest - it is very hard living with someone that has had encephalitis because they depend on you for everything. I don't mind as I love helping him and would do anything for him. He's my world.
2. Routine. Having a one-year-old and four-year-old as well is hard work as I'm looking after the three of them. But having a good routine and sticking to it will work well.
I hope this advice helps anyone that is suffering and PLEASE remember to talk to someoe about any problems as it's so much easier than keeping it all bottled up!
The Encephalitis Society is the operating name of the Encephalitis Support Group which is a registered Charity and Company Limited by Guarantee.
Registered in England and Wales No. 4189027. Registered Office as above. Registered Charity No. 1087843.