How long has it taken to get back into work?

[Riosmum]

My Encephalitis at the start of 2018 has left me with several disabilities and I'm worried I'm not recovering quick enough. How long has it taken you to get back to work? I'm not yet at that stage and want to more than anything

[Paula-38]

Hi Riosmum, Aww, I am SO sorry to hear that your Encephalitid has affected you in so many ways,

First of all, please do not worry too much about trying to get back to work as yet. Your first priority is your health before anything else.

Do you mind me asking what disabilities you are left with? This is so I can get a better picture to see how I can help you.

I am trying to help as many people as I can, as I quite enjoy it..

I had Encephalitis in 1977 as a baby, so I am afraid "I can't compare mine to yours or many others for that matter", as that wouldn't be fair on yourself and/or others but I am certainly willing to listen to everybody.

I only recently found out that I apparently had ' some of the after effects" but not that many really.

I try to be as sympathetic as I can.

[Riosmum in reply to Paula-38]

I don't mind at all.

I have quite extensive memory loss whereby the 5 years prior to getting ill have completely gone and all before that are very limited. I also struggle a lot with retaining memories now, repetition helps a lot if i keep talking about the event over and over i can recall it when probed but if it isn't relayed soon after then it is most likely gone.

Also, i now have epilepsy, currently on ~4 seizures a week and still changing meds constantly to try find a solution and on a waiting list for a VNS implant. For this i have to stay in hospital for a bit and have some tests done to see which part of my brain the seizures are coming from so this has massively been delayed by covid. The seizures are tonic-clonic lasting about 4-5 minutes and the confusion stage after is about 30mins.

[Paula-38 in reply to Riosmum]

I used to suffer tonic clonic seizures from age 1 right through til I was 17, but when I was 10 I had a lengthy stay in hospital to chamge my medications over to new ones called Phenytoin and Clonazepam, after that I went 1 year free, then 3 years, then 4 years free and my last one at 17, then one day they just stopped and I have been free ever since for 26 years. Mine used to last between 20 minutes and an hour, then I would have another one and this could go on for hours sometimes but just look at me now so there is always hope.

[Jensibel]

I had encephalitis back in 2005. I tried to go back to my old work in office marketing after about 3 months of getting the illness. However, my memory difficulties (medics call it cognitive impairment) meant that I couldn't hold down the job. The company let me go with sick leave salary insurance. I've since gone on to work as a school dinner lady. It suits me so much better! Established routine, clear task list and no long-term projects. 👍

[Riosmum in reply to Jensibel]

That's brilliant that you've found something much more suited! I'm 2 years down the line and still haven't been able to figure out my capabilities and limitations so just feel useless. When i've tried to go back it's ended badly, i had to give up my job/career as it was in the sea and that's not the best combination with seizures!

I feel like i'm being useless and not pushing myself hard enough, how did you work out what you can and can't do?

[Achenhead in reply to Riosmum]

Thank you Riosmum...I just had to leave a top paying job - educating doctors!! Realized I simply cannot continue to fake it to SUCH a degree that it set me over an edge due to anxiety where my brain turned itself off -completely. I couldn’t even log into my computer. The good Lord literally knocked me in the head- again, in order to acknowledge my deficits.

However, I’m thinking “acting” should be my next gig? I’m obviously pretty good at since people all think I’m “fine”.

[Paula-38 in reply to Achenhead]

I can certainly relate to anxiety.

[pinktulip123]

Hi Riosmum. I'm still in the process of starting treatment for high GAD limbic encephalitis, so I haven't started working yet. But, I might be able to offer some insight on figuring out what to do for as a job.I can just relate.

I have some memory deficets when it comes to words and I have trouble understanding what people say. It's much worse when I'm in flair. And, I also get dizzy when I sit up. There are other things.. like debilitating confusion...ect... These symptoms have worried me. I do just want to get a great job and do my part in society.

Somethings that helped me are:

- getting neuropsych testing to find out exactly what's going on and what therapies can help me

- working with a therapist weekly

- planning for my future job. I took assessments that gave me an idea of what I might like. The next step is speaking to people in the field and getting entry level work to test it out.

I found a few options.

Just getting clear on what jobs I might like, having a goal, and writing down steps has really helped me feel more useful and fullfilled. Even when the steps are small.

If you want to check out a few assessments I took.. here is a website: careerwise.minnstate.edu/ca...

Also, there are disability departments that can help people get great jobs with disabilites.

This is all just stuff I did. May or may not work 4 u.

In anycase, Good luck on finding a job u love!

[Achenhead in reply to pinktulip123]

Amazing information! I go for cognitive testing in about 6 weeks. It will help to just learn what my deficits really are and go from there. I will definitely look up the reference you posted! Thanks !

[Paula-38 in reply to Achenhead]

Good luck wih your cognitive testing! Keep me posted how you get on.

I wouldn't know what my deficits are to be honest does it mean the same as symptoms are something more medical?

[Paula-38]

I know from experience that theu DO usually keep you in hospital while they change your meds and give you scans. I went through this when I was 10. Another thing is, is that you "can't rush" epilepsy, I teally hope that they put you on the best medication to keep your gran mals under control, reduce the amount that you currently have 'this happens very gradually' over time and being patient with yourself.

Try to think of going back to work as a future goal to work towards, and 'not to expect too much of yourself too soon'. I understand you are looking forward to doing so when the time is right, but for now I would try to focus on 'getting your meds right' which can help A LOT! I think that you are pushing yourself "too hard too soon" and"try and not to be too hard on yourself" because you're :" NOT at all useless". In fact you are quite intelligent! I can empathize "with regards to low self-esteem" and anxiety.

Good luck with everything! 😊

[Marty1234]

Hello,

my son also diagnosed in 2018 with AE. He is nearly 19 and couldn't finish school yet, the recovery is very slowly with ups and downs.

We were told every single case is different. Sometimes it might take years to recover , but there is always hope.

What kind of AE to you have?

[Kate0090]

Hi, dont be so hard on yourself, it's frustrating I know but you have to listen to your body. I went back to work 7 months after my illness and I still find it hard and had to reduce a day as 5 full days is too much. Keep being positive x

[Paula-38]

I personally have never had the opportunity to work because over the years my OCD did improve but kept relapsing a lot which meant I kept dropping out of College courses, and I never got an A level or Grade B to enable me to go on to University, or maybe get more qualifications in Business Administration. When I improved 85% I DID apply for a provisional driving license so I could have took driving lessons but I relapsed just after applying. But these could be my long term goals rather than worrying about stuff when I am nowhere near up to it but maybe some day I will improve again, although it's a long way off yet. If I were to worry about these things I currently can't do "all that does is make me SO depressed. It's not worth it.

[BeckyRule]

Every person going through this will have different issues and different side effects so try not to compare yourself ❤ work is when you feel ready and want to.

I was given a 20% chance of living in jan 2019 with encephalitis and meningitis.

I was due to go back to work a few weeks ago but covid has but a bit of a delay on things for me but even me going back isnt me being 100% again

I was a full time manager and I'm going back to just 2 days doing what I can.

Dont push yourself to work if you dont feel ready for it.

Hope you're okay x