Encephalitis and grief...: How are you... - Encephalitis Inte...

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Encephalitis and grief...

Vethe3 profile image
6 Replies

How are you guys getting on with grieving the old you following encephalitis? There are times when I feel I've done lots of progress on this, and other times, it still feels so so raw. How are you guys coping?

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Vethe3 profile image
Vethe3
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6 Replies
Paula-38 profile image
Paula-38

Hi Vethe3, I'm SO sorry to hear that you feel that your encephalitis has turned your life upside down. I understand and sympathise A LOT!

However I had Herpes Simplex Encephalitis way back in the 1970's just after my first birthday party so I'm sorry that I can't empathise because in my case it has always been the 'same me' throughout my Lifelong Encephalitis Journey.

I do read your blog posts a lot. Maybe someone else can empathise better than me.

alpappy profile image
alpappy

That is so hard some days I just don't see the point of life I have not been able to enjoy all the things I did previously memory issues plague me...I had a photographic memory but I have a loving caring understanding wife and children and for them I do my best.

OldGnome profile image
OldGnome

Hello Vethe3!

I definitely understand the sadness that comes with the drastic changes that have happened to me. Persistent fatigue is the biggest problem I live with now. I can no longer work a full time job, and other basic household tasks take a tiresome toll on me. The first year after getting out of the hospital I was overly emotional. Now I am pretty much non-emotional, somewhat like Mr Spock from Star Trek. 2020 was a bad year. My brother died of cancer. 2 months later, my mother was found dead in her back yard after being on the ground for a couple of weeks. My girlfriend hit the road to move to another state. Now I live in solitude and the silence can be deafening at times. Others have said that it feels like life is no longer worth living and I can also understand that!

It is said that everyone has their cross to bear, and there are actually others who have it much worse than me. Knowing this makes me appreciate what I actually am able to do, in comparison to such people. Instead of focusing on what's wrong, I try to focus on what's going OK instead. I fight the fatigue and shift the negative focus by doing things like putting in a new vegetable garden this year. This is a tremendous effort and I had to rebuild most of my old rototiller to get it running, etc. The end result of this effort will be plenty of healthy, fresh produce, with plenty to give away to other people. When my mind is occupied with positive projects like gardening, I do not focus on greiving.

Too bad you did not live closer; I have about 54 tomato plants started now and you would be welcome to as many tomatoes as you could carry!! (That is, IF they grow and produce tomatoes!) Time will tell.

I still have my "sad days", though and all I can do is try to float through them and hope that the next day will be better.

Take care and enjoy the warmer weather!!

Vethe3 profile image
Vethe3 in reply to OldGnome

I love your take on life OldGn. Your garden will be plentifully no doubt. You’ll have to share photos of all the yummy veggies as they are growing. We are getting into winter in NZ so the garden idea will have to wait just a bit on my end!

Gandalf2 profile image
Gandalf2 in reply to OldGnome

Try visiting a donkey sanctuary,

they are great givers of affection. :-)

MasterBaker profile image
MasterBaker

Hello Vethe3. When I worked I didn't feel that I had a problem, infact I had no idea that I'd sustained brain damage. Now I don't work, due to disability and everything has risen to the surface. Nobody was there to help me understand what had happened to me, I was treated like I'd never even been unwell, despite my parents being told they would definitely lose me. Now, it's all going around my head, I feel that I've lost so much. I was a highly talented child, who had a bright future. My reading age at 7 years old was 13.75 and the teacher used to leave me to read the end of day story to my class mates. I was top of the class in every subject, including sport and I went to being bottom of the class in a few years. Some days I don't think about it, other days I can't stop thinking about it. It's a long process which may well take the rest of my life to conclude. People say to just forget about it, but it's never that easy when you're the person. My way of doing with it is that I don't know how my life would've gone had I stayed as I was. I don't know if I'd have been happy, yet I've had a happy life, with an amazing husband and 2 wonderful kids. I could've had a great job, which was stressful and taken drugs to cope, or anything similarly awful, so I'm grateful for the good that I do have in my life. I hope you find peace very soon xxxx

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