hi
I was diagnosed with encephalitis is November and have been recovering since. I’m back at work full time but the tiniest things seem to overwhelm me and exhaust me and this never happened before.
Wondering if anyone else has had the same experience and what helped?
Thank you in advance x
Hi Liv1005,
I had encephalitis the day after my first birthday, so I can relate to this after effect about getting overwhelmed. I think it's to do with having a slow processing speed, which has been normal for me.
However I can see where you're coming from though, since it's new for you.
But.. the good news is, that there are ways and means to work around it, like allowing yourself extra thinking time before replying both verbally and written communication, taking breaks from doing something and coming back to a task later, and knowing what your priorities are, do things in order of priority, one thing at a time, especially multitasking is a big problem for you.
Having as much time to yourself as possible inbetween tasks is a massive help for me. I don't get fatigued but instead I get anxious if I'm too overwhelmed.
Another thing I do, is ask people to slow down for me if I find they are talking far too fast for me, but when they talk slower that makes it easier for me, then I'm less anxious.
Like I'm able to talk to say two or three people at the same time if they are not talking fast and they keep to the one subject and let me know in advance if the subject changes and that works for me.
I hope some of this is somewhat helpful to you.
I don't have a job, but if I did, I would require reasonable adjustments like being allowed to take my time doing the job if it involves reading/writing/typing etc. I might think of a freelance job or something in the future, that way it's not time equals money.
What do you do?
What does your job involve?
I am always willing to help and answer any questions you might have.
Paula-38 x
Wow, returning to work like 6 months after E? That’s a lot. I am 3.5 years in, and it is obvious I might never be able to work a “normal” job again. Maybe it was too soon for you? I don’t know the severity of your case or symptoms or your job details, though.
Take it easy,
Kit
I agree with the previous comments. I couldn’t have even thought about work after 6 months. I’d just retired when I had E but was chair of a charity and busy. I had to give that all up and even 5 1/2 years later would be reluctant to take up anything that demanded too much of my brain and energy. So like we are all saying you are doing amazingly well, but also I agree that you need to be really careful and not overstretch your brain and energy. We all know and recognise that feeling of anxiety, being overwhelmed and the fatigue that accompanies it all.
I don’t know your circumstances and whether you would be able to work reduced hours for a while to allow your brain and body to heal more? Or if that’s not possible can you take proper breaks at lunch and during the day? You need to look after yourself. I know you’ve read Letter to my Brain but it is worth reading it again as well. Good luck. Please be kind to yourself.
I went back to work 4 months after E and fatigue was extreme but everyone said to remember I was a lucky one who had recovered quickly.Its now over 3 years and issues are memory not as good as you used to be and tire easily but I am a survivor.Biggest lesson after E be kind to yourself and be glad you are still here.x
It's amazing that you are already back at work full time after getting Enc. this past November! From my husband's experience with E and everything I've read on this site from others experiences, you are doing really well! Everyone's recovery is different based on the severity and type of E as well as age and well being of the person when they contracted E. So my husband was retired when he got E (from HSV1 virus) in May of 2023 at the age of 68. His recovery still continues, and yes, he still gets tired easily, and yes, he still gets overwhelmed more easily with certain tasks that he didn't used to have a problem with. From the "Letter from my Brain' posted on this site, we learned early on that it's better for him to rest when he's feeling overwhelmed, rather than trying to power through it. Or, simply change up what you're being overwhelmed with to a totally un-related and less taxing task. It's hard to be patient, but that's what you need to do for healing.
Wishing you all the best in your continued recovery!
I think your tiredness is the recognised medical condition that many of us have post encephalitis- it’s called ‘neuro fatigue’.
My lovely speech therapist in my first year of recovery gave me the best explanation for this. Before we had encephalitis, our brains operated on powerful Duracell energy batteries. However, the damage caused by encephalitis means our brain is left operating on a much cheaper brand battery which means that it still works, but it wears out much more quickly .
My fatigue was acute for the first 18 months, but it has gradually improved over the years since then.
The main thing is pace yourself, rest and don’t ignore fatigue .
When I eventually returned to work after two years, it was in a different part time role , as I didn’t have the energy or memory to do my previous job. . I found if I ignored fatigue and stopped resting in the afternoons, I triggered seizures , so pacing yourself during your recovery is really important .
Fatigue and short-term memory loss are classic symptoms of Enc. More info is on the Enc. Soc. website.
It took me four years to get a worthwhile improvement, but I still tire easily and can't remember most things. My earlier posts have more detail. Exercise both mental and physical - plus rest, is essential. You are doing very well if you are back at work.
G2
hi Liv1005, I had encephalitis at age 11 and coped pretty well up to my fifties. I’ve had a lot of stress and bullying at work and has put me in a depressive state where I’m angry, irritable, forgetful etc. It looks like having encephalitis can make the person susceptible to mental health issues. Can you get some help from work?
Wow, that seems a quick recovery and soon to be back at work. Everyone's different but I was off work for 2 years and took the next year to scale back to full time. The condition does affect mental capacity obviously which is why you might feel overwhelmed and fatigue accompanies recovery. One theory is that the brain expends its energy trying to repair itself-so you feel you have less. My advice was to take it easy, pace yourself to avoid the 'fatigue rollercoaster', have lots of little breaks, work at the time of day you feel best, only do 1 thing at a time and don't work too hard. I've been told your brain is still vulnerable and you don't want to trigger a relapse. More complete recovery takes a long time.
Hi Liv1005,
I am so sorry to hear about your experience.
Have you come across our website? We have lots of information about Encephalitis on there as well as links to get in touch. We have a support line and email support along with virtual support groups which you can attend on zoom. These allow others who are struggling to come together and talk about their experiences.
Our website is encephalitis.info
Please do get in touch and we'd be happy to help where we can and put you in touch with others.
Alex
Encephalitis International
Hi Liv,I am not sure if I have Autoimmune Enc, my diagnose is not clear. But fact I got the attacks in may-june and since end of july I am finish with cortison therapy. And... I have to say, I have the same problem. When I do something exhausting, I can sleep the whole day and my brain is slower then before...
And I see that I am not able to work fulltime. I am at home and I will take the time for me bcz I am afraid that this attacks come back and maybe my brain will take more damage.
Normally I would say no risk no fun 🤣 but in this case no, for me is important to stay healthy... And I hope that u do not exhaust yourself ❤️ all the best for you
I just wondered if anyone can help
Unknown Cause Encephalitis
