Hello my fellow suvivors...my E peeps. This question is probably hard for some; however, I am compelled to ask. So, here goes. Post E did anyone feel like not being here anymore? That the 'new you' was not happening? Are you there now? Or have you turned things around? If so, How did you turn things around?
About 18 months post E, I was done. Having no clue how to end my life, I sure wanted to, needed to. I had no life. I didn't recognize this person I had become—at all. Everything hurt all the time. I couldn't do the things I used to do. Then things turned around, like 180 degrees around. Stay tuned if you'd like to hear the 2nd half of this short story. I'm tired.
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Mnt2sea
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Hi Mnt2sea.I had Herpes Simplex Encephalitis and Status Epilepticus at the same time way back in the 1970's the day after my first birthday so I'm sorry that I don't have the 'old' or 'new' me in fact it's "the same me".
However, we share SOME of the after effects like keeping up with conversations, and 13 years ago I had suicidal thoughts for 2 years because of my profound Obsessive Compulsive Disorder - OCD was being neglected for about ten years. I had OCD since approximately 1993/4. Cognitive Behavioural Therapy has helped me with the Clinical Depression and that is what you require.
And if need be a certain type of antidepressant called SSRI's short for Selective Serotonin Reuptake Inhibitors to go with the CBT I mentioned can help to motivate you. But first I suggest you see a neuropsychiatrist who can give you a mental health diagnosis and refer you to your local mental health services if they have a Cognitive Behavioural Psychotherapist there.
Please feel free to ask me any questions as I am only too happy to help. Thats what I'm here for to help people out.
Hi Paula-38. Thank you so much for responding. Living while not wanting to is so uncomfortable. I've moved on from being suicidal though. I will look into the CBT. Thank you again. My best to you.
Thank you Mnt2sea. 😊Best of luck with looking into CBT it also helps with anxiety too. Please keep me posted how it goes and a step by step approach is best.
I was waiting in order to give a much better reply with what I have been through as well. Yes, I have had some very dark days too, although I always seem to be a cheery sort regarding my posts. Lately I have been experiencing some almost frightful days full of power and energy! These days tend to dispel any deep thoughts of my living a pointless existence that I once had on a more frequent basis. If things continue like this, I may eventually be able to get back to work full time again, but I am being very careful with all things!
Hello OG, your posts are always a delight to read and I look forward to your thoughts. I find there's a thin line between things feeling OK and things going the other way. I guess as long as there are more ups than downs we're doing well. Avoiding stress and allowing time for recovery and relaxation is my strategy. Happy days, G2
Hello OldGnome--this is good news to hear about your better days. I too have been experiencing really good days. There's this secret little voice inside me that whispers, 'don't get to comfortable or acquainted with this feeling'. I am doing my best to squelch this unsolicited fear. I've been focusing on really listening to my body and tuning in to what it's trying to let me know. Some days I am better at this than others. Part II is still to come. . .
Now you sound a bit like me; I described my days of power and energy to be almost frightful, because in the back of my mind, I fear that they will not last and that I may go backwards a bit in my recovery. I must also squelch that fear and move onward and upward but it's not always as easy as it sounds!
Part 2 will be written when you are up to it, I'm sure. I was just wanting to read all of what you had to say in order to reply with ideas that best fit the situation.
I did not reply to your "Shovel on Old Gnome" post, sorry! We ended up getting 14 inches of snow so I bravely cleared my diesel tractor and spent 2 hours of machine time getting my driveway cleared!! No shovelling for me! LOL!
Now it's time to get outdoors here and pull the battery from my car which decided to quit yesterday morning as I was trying to get to work. Hope the day treats you well!!
Blimey is a British informal interjection used to express surprise or excitement. It is a shortened form of blind me, as in God blind me, and has the same meaning as gorblimey.
Hello Kitnkaboodle---I'm still working on the words for part II. I'll definitely post when I get there. It's happening but hard to put into words. Thanks for standing by because I need to name this.
Hi, I know how you feel and it sucks, I've thought about not being here because it's hard not being able to do things you could do with ease before, we just got to keep going and be strong and positive which is hard i know, but we could have been alot worse of and should appreciate what we do have and can do xx stay strong
Thank you for reply. It's good to know I'm not alone in this journey. You're absolutely right, it could have been worse. . . I did come out of my coma. Ah. Thank you for your encouraging words.
Hi Mnt, I hope you are feeling better than before. In my experience suicidal thoughts are are pretty common for Enc sufferers. In the UK the best thing is to tell your GP. I think there is a specific medication for thoughts of self-harm and they show great concern when they are aware. At least that's been my experience.
You don't say much about your situation, support levels, etc. so hard to know how to advise. If you can cope and get through it there are always brighter days ahead. Hobbies, walking, socialising with others, a furry pet
My rehab nurse gave me a couple of phone numbers for the Samaritans and another crisis line. I've not used them but these people are usually very helpful and give great comfort and advice.
Hi G2, thank you for your words. Iam feeling much better for going on one week. No desire to not be here. I am present and working through pain issues. Thanks for your support.
Hi Mnt, thank you for your reply. People on the forum have generally have pretty much shared experiences one way or another and most will have a go at lending a hand where they can. It's good to hear you are having an upswing mood wise. Looking around and within one's personal life there are many things which can shove one into despair for a while. Usually things improve but it can often seem like a distant prospect.
I went through a surprise episode of suicidal thoughts today centered on a meeting with one of my rehab nurses at the local sports centre which offers facilities for those who are cracking up but still clinging on. Turning up there, despite all the good intentions was like an amputee going to look at his new wheelchair, just reminded me of my situation.
In a way I find the more support arrives the worse I feel, kind of ironic. Ha ha and oh well, c'est la vie.
Anyway to cut a short story long, with all the pressures, lack of sleep, domestic issues, the long term stress of Enc and the nightmare of a drive across Leeds by the time we got there I had completely broken down and went into a pretty catastrophic meltdown, gibbering and quaking non-stop. Suicidal thoughts swelled in my mind and I couldn't shake it off. We walked around the circuit four times (1.6 Km) and then called it a day.
Returned home and had several cups of tea and a long talk with the nurse. I was afraid of being sectioned and placed in a secure hospital (my mum was sectioned when I was about ten and it seemed that was something I had never got over) I could barely stand and I was put to bed with plenty of blankets. The visit from a 'crisis team' was thankfully put off.
After a two hour sleep I awoke feeling much better, tea and biscuits helped a lot. The nurse had left stressing to my wife that I should not be left alone. Things seemed to have improved a lot and maybe some issues in the far back of my mental history had been aired and perhaps defused. Some old knots are hard to untangle and old socks can hide at the back of a drawer.
I've gone on a bit but it all happened today, so excuse me if I have gone astray here. Sometimes one unloads in the wrong place. Suffice to say I'm still around, I have an appointment with the doc tomorrow and there may be a light at the end of the tunnel.
One minute you're drowning the next someone has pulled you back onboard, soaking wet but alive. My goodness it was a hard one but with help I managed to 'pick myself up, dust myself off and start all over again'. The sky is blue, the birds are singing and the air is fresh. You can make it.
I'm so sorry that you're feeling so beaten, I know it's not easy. I was 12 when I had encephalitis, so I'd hardly got to know who I was. I also had to deal with teenage hormones and understanding how my new medication interacted with my diabetes (at the time even the Dr's didn't know and they gave me vert little help with it at all).
I regularly feel like I don't want to be here and often hope that I won't wake the next morning. I have a husband and 2 adult children, who I know would be devastated if I ended it., so thinking about them in a pain that I've caused is enough to stop me.
You need to grieve for the person you've lost, while getting used to the new you. If you end it all you'll never find our what you're capable of doing.
I honestly feel that exercise is the best thing ever. You can take out your frustration while doing it, your body will make loads of lovely endorphins and you'll feel proud of every new step you take. Why not find the exercise which suits you? I know I go on about my pedals a lot, but they're amazing. I've lost nearly 4 stone by using them and my mobility is so much better. You can either listen to the physiotherapists and do what they say to do, or find something that agrees with you more.
When I started I could do 2 or 3 minutes on these, now I can do more than 1 hour. Maybe these could help you too.
Whatever you do I wish you all the very best and 1 day soon we hear how well you're doing.
That's so cool....love thoes pedals and the fact that you've been able to work up to an hour---very encouraging. I actually got a little one year old dog (she only weighs 7 pounds) for Christmas. I've been walking her twice a day and being out and moving does seem to be making a difference. I've also been watching videos put on for free from the Avayia University on Chronic Pain. They have been so helpful about how our body gets our brains attention. I know for me, I live too fast without thinking. Now I think! Thanks for replying. I'm happy you have a husband and kids that love and need you. Heck. we all need you. None of us could or should go at this alone. Follow E survivors have much to offer one another. Thanks again. And keep pedaling.
I'm so pleased you have a little dog, they bring so much love and happiness to our lives. I had a yorkshire/Jack Russel terrier. She was amazing and I totally adored her. She lived to be nearly 18. I still miss her, but the joy she gave me every day was 2nd to none. I wish you all the happiness and joy with your little one that my beautiful girl brought to my lifePs I'm so pleased you're managing to stay fit. That's a huge advantage over illnesses. We'll done, you're amazing and don't ever forget that xxx
Hi MasterBaker! Thanks for the lovely respond. Will you be getting another furbaby? Yes, having this precious angel in my life has been nothing short of a miracle. She's perfect. She's little, I take her everywhere....lol not that I go a lot of places. This journey is becoming one I no longer regret. I've learned so many things about myself and life in general. I no It's been over 2 months since I've had any thoughts about not being here. I give my glory to the power of God and his healing transformation. My best to you MB and I hope you do consider the love of a new doggie or kitty. I have both. Until next time.
Thankyou for your lovely message, I'm so pleased that your new family member is bringing you so much joy. I'd love to have another little dog, but I have 4 cats and they were never completely settled or happy with a dog around the house. Also, I am disabled with mobility issues, so will struggle to walk another dog.
I'll just enjoy the 4 that I have for now.
I would say that when you talk of the power of dog, that you should consider writing the noun backwards. The power of Dog seems so appropriate. 😆 I'm only kidding, but dogs are incrediy special.
Hey there- we sound pretty similar, I just turned 59, had HSVE - in fact coming up on my third new “birthday” on Feb 14th…I felt the same as you describe- had to quit my great job one year later, after I wound up in the emergency department when the stress of work caused a complete mental shut down…and life’s been an uphill climb ever since. I mean, I LOVED what I used to be able to do - as a pharmaceutical nurse educator…I mean, I used to educate DOCTORS. Now, I have a hard time following directions, remembering what I just heard, etc. I faked it soooo well though. So I feel like I was in training to become an actress that first year post E.I also had to work on my absolute anger over catching my first ever cold sore from my then fiancé (now husband) and 7 months after our wedding, waking up unable to speak…losses like smell and taste sucks too.
But, I finally pulled myself out of the hell hole, with the help of multiple medications to help with these new neural pathways…three antidepressants to be exact. Oh, and I started playing the drums last year which has helped me more that any drug ever could…
So what’s my next gig in life? Playing in a band?? Who knows…
It’s good to know we aren’t alone.
Looking forward to hearing about your next chapter. As I always say, “all in my book someday” which I think will happen for me…
Hi Achenhead, yes..I do believe we are somewhat similar. My world changed 2/11/2020. I came out of my coma on March 8th. That's a long time to be in a different world; the place I was in during that time was nothing short of pure hell. And then of course the on-going post E. In the beginning, having to learn to walk and talk, all the basics. Our mind is something else. Often, I'll write a paragraph maybe two thinking it's a start for a book about my experience but I don't have the ability to put anything cohesive together (and I'm ok with that----now). I think it's awesome that you've taken up playing the drums. I agree with experts that expanding the brain is ALWAYS a good thing. Maybe you will play in a band, maybe you will write a book. When you're famous, I can say, I knew her back when....Thank you for replying and sharing a bit about yourself. It's great that you have a husband and children, such a blessing in your life.
Thank you for sharing this. I appreciate the courage it must have taken to write it.
I'm not sure where are you based in the world but the emergency services are always there if you feel you are intending to end your life and if you have made plans to do so. There is always somebody who cares and loves you. The Samaritans offer support to those in the UK/ Ireland samaritans.org/?nation=ireland
The encephalitis society has offers support:
One-to-One Wellbeing Support Sessions
We are pleased to launch one-to-one wellbeing support sessions with our mental health and wellbeing manager. These sessions are aimed at providing a basic emotional and wellbeing support to our members. This service is tailored around your circumstances as far as it is possible. Please note that these sessions are not counselling or therapy. Our mental health and wellbeing manager will provide a safe space for you to explore any current issues you may be experiencing and provide wellbeing advice, signposting or just a listening ear.
Your mental health is an important part of your wellbeing, therefore, we hope these sessions will help to encourage positive changes and improve your overall mental health and wellbeing. Please contact tasmyn@encephalitis.info
I say to myself "This too shall pass" when I'm feeling overwhelmed and stressed. This too shall pass and that feeling will pass. Please reach out as someone is always there to listen and sit with you as the feeling passes.
Hi Ocean96, Thank you so much for your reply. It's great to hear about this good information and the amazing work that the society provides. Just an update, it's been over 2 months since I've had any consideration about not wanting to be here. It's an overused metaphor but I truly believe I turned the corner. Today, I really listen to my body and try my best to honor it whether it needs to eat, rest or. Adding my precious baby girl (furbaby) to the family has been amazing as well. She's training to be a service dog and has been pivotal in keeping me on track. My Best to You. Life is Good.
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