Do you feel as though you’ve been transported to some sort of parallel world? It’s a similar world but different. A bit like your living in a world like in the television series “The prisoner” where you’re no-longer a person but a number. “You are number 6”. A strange and extraordinary place which you’re constantly trying to make sense of whilst at the same time looking to escape and find a way back. Back home. It’s all very surreal.
Well - that’s where I am at present. I am number 6, desperately trying to escape and find the person I was. I know he’s close and I know that he is also looking for me. He’s reaching out. I can feel him.
So I’m not ready to accept this new me, not ready to accept that I am number 6. I’m not! Somewhere there is still Remos!
I just need to be patient😔.
Remos/No.6 😥.
Written by
Remos
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I’ve been there, and sometimes when something else happens that knocks me back, I feel like I’m slipping back but never ever as far back. Even after over 3 and a half years I still sometimes want the old me back but honestly as time goes by and the worst memories fade, I find I’m more accepting of what I can’t do and find more joy in what I can. Hang on on there and grab any good things you can.
Hi GreenBamboo - thank you for your response and support. It really makes a big difference to know others recognise where I am. I sometimes feel as if I’ve gone a bit “do-lally”. Thank goodness others have been there and have escaped. Thank you.
Remos, Thank you very much for sharing. I make up this is exactly what my husband is going through right now. He wants his memory of 20 years back. He doesn't remember living in our home, does not remember our wedding but thank God he does know I am his wife. All the streets and buildings look different. I hear him say he wants his life the way it used to be. It's a very sad situation... his so called friends do not call anymore. We invite them to lunch and they don't even respond. He never hears from his family. I guess it's hard for them to hear him ask the same questions over and over. The couple of friends he does have, he doesn't call them because his brain tells him they never call him back. It's just a viscous circle.
So thank you again for posting. Once he wakes up, I'm going to ask him if I can read your post to him. This website help me to remember that we are not alone out there.
Wow, NebraskaTexas, I thought it was just me with the friends. I also never hear from anyone, and my family is the same. I suppose like most, they were just "fair weather friends"; really not friends at all. Even at this later stage of recovery, this one bothers me the most and is taking me the longest to adjust to.
Thank the Lord that your husband knows you are his wife!! You are truly the best of friends! If I had even just ONE true friend, life would be very different. Being the tough old gnome that I am, I am not trying to wallow in self-pity, merely trying to point out that it's a wonderful thing that you both are sticking it out together!!
Hope you both find something fun to do......together!!!
Thanks for your reply. I responded a couple of days ago but for some reason I don’t see it now. It’s this new strange and extraordinary world I now live in. Nothing is quite the same🥴.
Anyway, I also have a similar situation with friends but I guess it’s probably more my fault than theirs as I rarely call anyone or return their calls to me. So eventually they stop calling altogether. I just don’t feel up to it yet.
I have been exactly where you are today, when I was wanting the "old me" back. I am not familiar with that show "The Prisoner", but a quick wikipedia search filled me in on key info.
Now, thanks to you, I will have to see if it is available on YouTube! Are you referring to the original series from the 60s, or the 2009 remake?
Soon, I begin year number 5 of my recovery and it has been one heck of a roller coaster ride! This year I am doing much better in my ability to take on physical tasks without being devastated by fatigue, nearly as badly. At this point in time, I actually do appreciate being able to do even trivial things such as vacuuming the house, cooking, laundry, etc. I know that the "old me" will never be back completely, but have learned to accept the "new me".
Actually the "new me" is a mixture of some of the "old me" and some new elements that I believe have actually made me a better overall person. As I have said before, I have developed a permanent sense of caring empathy and calm demeanour that I never had.
I wholeheartedly agree that you must be patient with yourself. For me, this was not easy for the first 2 years of recovery. The lack of ability truly made me feel like a prisoner in my own body and house. Skipping ahead to now, I find that I must make a conscious effort to stop myself from attempting to do things I should not!
Yesterday, I took delivery of some very heavy audio equipment. I had prepared my tractor, mixed the diesel fuel with anti-gel compound, etc. A huge semi-tractor truck appeared to offload the wooden pallet, and I was simply going to use my tractor to move it. Nope, my encephalitis memory problem decided to manifest itself at that very moment; I could not find the key!!!
The "old me" would have become enraged, but the "new me" calmly figured out a different way of getting the task done. (This is where I did something I should not have.) So I lifted both crates, one at a time, into my car hatch, but each weighed about 110 pounds. I should have called someone for help, but the stubborn "old me" took over!!
So it looks like I may be in for a perpetual fight between the "old me" and the "new me"! In time, I truly hope that you get to the point in recovery of being able to recognize the both of them, and take the best from both!
I apologise for the length of this post; I am what is called a "yakky doodle" most of the time.
Hope you find something fun to do, and I hope you find patience for yourself!
OldGnome
P.S. After tremedous effort of bringing the equipment into the house, I took my winter coat off. The I reached into the right pocket of my sweatshirt and guess what? The key was found!
thank you for your reply. I’ve only ever seen the 60’s version of “The Prisoner” and that was when I was about 10. Never seen it since so just goes to show what an impression it must have had on me. Didn’t know their was a 2009 remake. Not sure they showed it in the UK so I can’t comment on which you should watch.
Maybe some day I’ll be able to accept the new me but I’m not there yet. I keep thinking that eventually I’ll be myself again. I guess we’ll see.
I don’t mind your “yakky doodle” replies. I’m just so grateful that people actually take time from their day to respond to me. It’s wonderful.
I am very excited to report that it looks like the ENTIRE original series "The Prisoner" is available to watch on YouTube!!! I have not had a proper television set in over 2 years but this might just push me into finally getting a nice new 65" OLED unit!! It will go along great with the new audio system here!! Here's the link if you are interested in viewing it:
I watched the minute-long introduction and it looks to be a very British show, packed with attire, cars, and mannerisms of the late 1960s. Certainly a refreshing change from the comparitive rubbish that floods the channels here in the U.S. (Which is probably why I don't have a TV set up, nor do I subscribe to a cable tv/satellite tv network!) I've got a nice large 32" computer monitor, but looks like it's time to upgrade!!
Thanks for the rather unintentional tip on this show; I don't usually get too excited about much any more, but this one is getting me there!!! 😁 With any luck, there will be an Emma Peel equivalent in The Prisoner, too!! Gotta love the original "Avengers"!!
Wow! You managed to find the whole series - well done. I’ve already book marked the link and will try and limit myself to one episode a day at most.
The Prisoner is definitely of the same genre as The Avengers so I’m sure you’ll really enjoy the series. Lots of different Emma Peel equivalents make an appearance but not Diana Rigg herself. Who, just out of interest, went to school (Fulneck Girls School) just down the road from here.
If you do decide to treat yourself to a 65” television please be careful you don’t try to lift it on your own. I’d hate to be the cause of a bad back.
Hey, Remos. The others have really said it all, but I've been thinking about this post occasionally since you posted, and I wanted to add a couple things. This comment might be a bit short and more like a list, but that's because I'm fatigued... forgive the lack of prose or poetry haha.
Your comments about searching for your "old self" remind me of someone's comments on the ES virtual gathering (encephalitis.info/blog/virt... from last Wednesday, March 9. He also mentioned wanting to hide behind his sunglasses in public, which reminded me of this recent video for Brain Injury Awareness Month (link below).
You're different now. We all are. We see. We understand. We carry on.
But let's also realize and remember that this world won't ever be a home to us. This world—full of disease, hate, pain, sorrow, and strife—wasn't meant to be like this. And it won't be like this forever. Revelation 21:4-7.
Yes, it was difficult for me to watch it and hear about their ongoing challenges. We need to be brave and patient, and even more of the latter than the former, I think.
My brother told me the other day that I seem relaxed at home and on edge in the world. I am scared of the world, or, more accurately, my body fears it. It is so damn loud, chaotic, overwhelming, and pain-inducing. Social interaction of any kind is tolerable at best and hellish at worst.
Maybe one day, things won't be so hard anymore. We have to look at our recovery arcs in terms of months and years, not days or weeks. I have made incredible progress from 1 to 1.5 years ago. If I string together countless days of rest and healthy and supportive activities, I might improve greatly from this point. The worst thing we can do is to stagnate and despair in this moment. This too shall pass. It won't always be like this.
I'm ever so sorry to hear that. I know that it will be difficult that's to be expected but life is not always easy my friend
Try to focus on how you are now, try to live in the present, and try to not dwell "too much" on the past but you can write down your negative thoughts in a book then close it, then take time out or get involved with a hobby if possible and you can always come back to them again at a later date - it doesn't solve the problem but it does take your mind off it for a while.
Never give up hope!
Learning to adapt to life with encephalitis is far from easy in the early stages but.. with time it IS possible,
Allow yourself extra time for things if required.
Take breaks/time out
doing one thing at a time, don't overdo things,
making the most of what you have got
sometimes life can feel very overwhelming from my experience,
But because I was diagnosed with Encephalitis the day after my first birthday, no I don't to be honest, and the fact that I have always been "the same me" although this might sound a bit strange to you and most of the Encephalitis community but I don't know a life without Encephalitis and I only know the one life with Encephalitis so I have very little life experience.
I sometimes feel as though I'm the odd one out on here as a result of this and when I meet other members on the weekly/monthly calls. This is a topic that most often spoken about and I can understand why and sympathise but just csn't talk about a life, I have never experienced. Life to me has felt like normality. How would you and everyone on here feel if I was complaining about my lifelong journey if I was talking a lot about me being the same person and imagine there were others complaining about this besides me? I'm sure you would feel out of place wouldn't you?
I'm sorry about ranting on a bit much but I had to explain how life has been for me and how I feel about it.
Hope I have been of some help to you but I tried my best.
Thanks for your reply and apologies for not responding sooner. Please don’t feel you’re the odd one out. In many ways we’re all the odd ones out compared to most other people - we just have different journeys.
This rings so true!! I’m 42 and suffered last year. I’m still trying to accept the new me. I’ve got a lot of physical stuff back now but my cognitive skills are shot. I repeat myself a lot and can’t remember what I just said. But I’ve joined a drama club and that’s really helped. Which is actually really positive. The old me didn’t take the leap even though I wanted to. Good luck in your recovery.
Thanks for your reply. We sound to be on similar recovery timescales, so well done on managing to join a drama group so early on. Not sure I could do anything like that just yet. Although it sounds like a perfectly sensible activity to try. I hope the old you eventually breaks through. Please let me know if/when this happens.
Hi Everyone,I m now 18 months on and have begun to accept the new me .Well everything except my left eye that droops because the big E effected the nerves. I look at life differently.I recognise I nearly died and I celebrate that I am still here.I recognise that I cannot walk as far or as fast as I can but I can walk and I walk along the beach and look at the sea and I m glad I m here.I too was saddened by friends who backed of but now treasure more the friends who held my hands during the darkest days. I met a Buddhist recently who said you should look for the joy in your life and hope will return.I think my journey has made do exactly that.Take care all,Xx
I know the feeling I can be good for months then like this weekend I woke up after bad nights sleep and my memory was wiped. Taken two days to recover ...my neurologist says no treatment is available just some exercise and keep using my brain
Hi Remos, Your post is so true. I feel that way now. I haven't given up that a version of the "old me" is still out there. Coming to grips with the fact that I may not be able to do the things I have done so easily in the past, is hard for me to do. I struggle with that.
Patience is hard for the stubborn part of the old me that hasn't left. I still try to give myself a break. I am now 16 months from diagnosis and 13 months since being discharged from rehab. Is it too soon to expect more of my old self to return?
Thanks for your reply. Sorry I’m a little late in responding. I too am frustrated at not being able to the same things as before. I’m now 9 months from discharge. I used to walk 3-5 miles a day but now can only manage 2 at the most. Anything more and I know fatigue will hit me the following day. Please don’t give up on finding your old self. I’m convinced I will at some stage. As I mentioned in my post I feel “we” are both reaching out to each other and are determined to escape this unreality. What I find helps me is to sit down and meditate for 10-15 mins each day. It helps to “clear the clouds” and hasten my healing/journey.
Good luck and keep the faith. I’ll let you know when I get there.
I am a fan of The Prisoner as well. Every day is like the opening sequence where I wake up, look around and don't know where I am. I read somewhere that the pennyfarthing bicycle is a symbol of progress. As the series continues, #6 gains adapts and eventually gets to the point where he grabs the handlebars indicating that he is now in control of what happens to him.
Every day is another of my prisoner episodes. I am making progress gradually adapting and taking more control of my life that AE temporarily took away. You are not a number, not a statistic, but you are a FREE MAN who can chart his own progress and escape the AE village. Grab those handlebars!
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