I have been doing so very well but in the last week noticed that I am feeling a bit "odd' again.
Last weekend I drove to see a friend and went to her previous home that she moved from about 10 years ago now. It was only a few streets away from where she lives now but I have never done that before.
In a meeting this week with my Team at work I was struggling to find the words and forgetting whether I had already covered the topics of the agenda already or not!
I went to a shop yesterday and my movement was clumsy & unsteady.
I think it is because I am tired and so not concerned but I am so frustrated!
For those of you "out the otherside' are these 'odd' periods to be expected longterm in your experience?
I am hoping that I feel better again after rest but Enc is always lurking in the background !
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GreenBamboo
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I had Encephalitis the day after my first birthday so you can't compare yourself to me.. I gradually improved as I got older but apparently that is how it affects babies and young children, it's the complete opposite of how the adult brain works.
However I have met other people like yourself it "sounds like" you may well have short term memory loss. Personally I never had that problem nor fatigue either and I'm not a doctor, but I'm one of the Encephalitis Society's volunteers there are so many of us here now.
I do suffer from an anxiety disorder called 0bsessive- Compulsive Disorder - OCD, and I have always been a very paranoid and anxious person.
With regards to your movements do you have a movement disorder, or epilepsy/seizures?
I'm thinking it could be any of those symptoms, before considering the physical symptoms of anxiety which I THINK it might be.
In any case I suggest that you talk to your doctor and you can ring the Encephalitis Society on +44(0)1653 699599
I hope you’re feeling better today and managed to have a rest.
I’m over a year out of hospital for my NMDAR encephalitis and honestly I do still have my own ‘odd’ moments. For me it’s also when I get really tired, overwhelmed or a little overstimulated (bright lights / lots of tv etc) and it can end with a big headache, fatigue and some movement issues. These moments are definitely becoming more few and far between but they can still creep up sometimes.
I also so understand the frustrations, it’s difficult when you’ve been having a good run but I think it’s really important to be kind to yourself when these things happen and listen to your body.
I don’t know if my little ramble provides any comfort but hopefully it will help - just know you’re not alone.
Hi. I’m not quite the other side but definitely getting there. And yes. I did have odd ‘blips’ where I got confused or I had a wrong memory and my husband or sister explained I’d got it wrong. I don’t get that much now but when I’m tired I still talk too fast and get words or even whole sentences wrong. It usually happens at the end of a busy day now but I can slip the wrong word in at any time.
The clumsiness is a lot less too but when I’m tired I’m very annoyingly butterfingered.
I do think in your case this is caused by over tiredness and associated stress because stress is the one thing I really don’t do well. However it is worth taking Paula-38 advice about the Encephalitis society and asking them because they are the experts and it will put your mind at rest.
I really thjnk it is the fatigue and I am sure with rest I will feel better. I am thinking that these odd times will be around for a while. I haven't got any worse.
I am almost beginning year number 5 of recovery and things are much improved for me since 2018.
I still have troubles with my short term memory, though. The fatigue is the main problem that remains, for me.
So I still have "odd times" but less often. I have learned to stop trying to multitask so much, which can throw me into the short term memory-loss mode. If too many people try to talk to me at once, I also sort of "go blank" and can't listen to what any of them are saying.
I do not drive very far from home any more. If I have to go somewhere that I am not 100% familiar with, I fire up my trusty cell phone and let "Google Maps" talk to me as I go down the road.
I guess I have learned what can trigger my problems, and what to do to stop them. Keeping things writen on my dry erase board, avoiding problem-inducing situations, and Google Maps are helpful to me.
If by chance you see a red FIAT 500 with Pennsylvania license plates, it might be me, and then you know that I REALLY took a wrong turn!! 😁 Crossing the Atlantic Ocean might be a problem, though!
Hope you continue to improve and find something extra fun to do this week!
I reckon you'll be well & truly multi-tasking if we see your FIAT 500 in the Atlantic Ocean! You will need a rest after that!
I suppose over time I will learn more about triggers and strategies to prevent these odd times. I have done pretty well up until now but this has crept up slowly.
I will try to rest up over the next few days to get back to the new me.
I’m not sure I can add anything further to what has already been said. However, I still wanted to reply and offer my support in the same way you have supported and reassured me in your posts.
I still get very fatigued on a regular basis particularly during the day. However, what I’ve found helpful is to put on a “blackout mask” - the same kind people use in an aircraft. It’s amazing how much more light it blocks out even when I have my eyes closed. This has an immediate effect of helping me relax and de-stress. I also quite often have a cup of tea that I sip slowly which I hold on my lap (and try not to miss my mouth 😂).
I understand completely. I get a weird feeling before I have a seizure sometimes and don't know why. My last really bad seizure I fell and Don't remember anything. I woke up back in bed and even hooked up my feeding tube. When I was awoken 3 hour's later my husband was horrified. I had bruises around my neck a black eye and bad head injury. I didn't believe him and went to try to sit up and had a horrible pain in my left arm. Apparently I fell and crushed my elbow and broke 2 bones in my arm. I ended up in the hospital having emergency surgery for 3 and a half hour's. Yet I still have no memory of what happened. It's like a big hole of black. Always pay attention if you suddenly feel odd. Don't drive or do anything until you are sure you feel ok. Then call your doctor. I get breakthrough seizures maybe once a year or even 2 year's so I don't understand why but they start with a odd feeling. Good luck to you.
Hey, I’m a little late to the party, but I just wanted to add something… I’m not sure if there is “another side,” but if there is one, I’m not on it. I got sick two months before you, but I currently can’t even dream of doing all you’re doing: working, driving, socializing, shopping, etc. It’s a lot! Is it possible it’s too much for you right now? Early in my recovery, I deceived myself and thought I could do more. Now that I’ve settled into a routine I can manage, I can control my symptoms better. Every E case is different, and my ABI is probably more severe than yours, but just food for thought.
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