Today is my 26th birthday—my second since E.
I think October 18, the day I got sick, should be my new birthday. I track time and progress from that date, not June 1.
And let’s be honest: I’m closer to two years old than to 26. My sister says I’m a precocious eight-year-old.
Last year, I had a major meltdown on my birthday. I had one yesterday in anticipation of today. 🤦♀️
I hope today will be calmer, but if not…👇🙃
Happy Birthday Kit! Many Happy Returns of the day!
I completely understand that it doesn't feel like it's your birthday. I'm ever so so sorry to hear that you had a meltdown on your last birthday and yesterday. 💔
I had encephalitis the day after my first birthday but I never really thought about it to be honest. Because as everyone in the Encephalitis Society who knows me, will know that 'Encephalitis was never mentioned again after my diagnosis'.
Hope you have a nice rest of your birthday and don't expect too much of yourself. Take it easy and just do what you can.
Take it from me. ❤
Thanks, Paula-38 ! I appreciate your reply. I remembered your advice about taking it easy throughout the day, and it helped: I avoided a big meltdown. Hooray!
That's great news! I'm so glad my tips worked for you lovely Kitknaboodle! 😊Now you know what works you could make a note of it for future birthdays/the day you fell ill.
However, this might sound rather strange/odd/daft etc to EVERYONE here , the fact that I'm 'just the opposite to you guys' coming from a different perspective.
I suppose it's difficult for you guys to empathise with me. But having said that, that doesn't mean we can't all be friends/connected does it?
I don't think I have an anniversary to celebrate when I had encephalitis or even gave it a thought. But fortunately I remember all my birthdays (obviously except my 1st), even the average person wouldn't remember their 1st birthday either.
Thanks for the reply, Paula-38 ! No, that doesn't sound odd, but I don't think we struggle to empathize with you, and I'm sorry if you've ever felt we did. We are all connected through the shared experience of E, although the details of our cases widely differ. For example, I've never met someone with a history of E with the same kind of startles and movement problems. The differences need not alienate us further; I don't know about you all, but I feel pretty damn alienated in the big, bad world sometimes.
Thanks for the reply and your understanding kitnkaboodle! ❤
I have always felt like I was the only one who has grew up with the after effects of 'E', well I have met 1 peron in the same boat as me but it's quite a long time since I last saw him or spoke to him.
That's how uncommon it is in babies/children who have grew up with the after effects.
However, when I read people's posts with regards to how they were before they became ill, the new you, anniversaries, etc I'm so heartbroken and sometimes I wish I "had have had" a life before 'E' like most of you guys.
Also that "could have made" it easier to empathise with the kind of topics I stated at the top of this post/reply so I try to think about it, had I have been in your shoes and most people' here as if something disastrous had have happened to me what might I have been like?
I'm sorry to say but I feel out of place in that respect.
If the shoe was on the other foot and you saw a community full of people talking about how life was like as a baby/toddler/child growing up with the after effects, not having a life before they were ill, knowing nothing different, life felt like normality, nobody knew what was wrong with them, why they were different from but similar to the average person,
not knowing what normal was plus they have always been the same person
and there were only the odd person in your shoes. Do you think you would find it easy especially "knowing what to say to them" that's the hardest part trying to respond to posts about things I have highlighted I bet you and most other people wouldn't read things along those lines if it's not applicable to them. I posted loads over the last 2 years and some of them didn't get replies but a couple of them did.
It's like you trying to think to yourself had something disastrous had have happened when you were a baby/toddler/child would you ask yourself "what might you have been like"?
I have to say I have mixed feelings and let's see how EVERYONE replies that's all I can say or do really and just advise/help EVERYONE the best way I can, even though it takes me a long time to think through what I'm going to say first, how to say it in a non offensive way because my social skills are last. I even read it first, then if it doesn't look or sound right I can edit it but I can't do that verbally so I keep quiet, listen and/or watch/observe others.
In other words you guys may have to wait an extra day or two for replies to give me time to process the information as my slow processing speed and my vocabulary are last.
One last thing I wanted to say is:
Yes, I do agree 100% that "we are all connected through the shared experience of 'E'.
Maybe on the odd occasion I might be a little bit alienated in the big wide world because I do have one or two disadvantages when it comes to "lack of life experience for my age" more or less approaching mid life in a couple of years. Learning the do's and don't's in life, I jot down anything new I learn so I don't make the same mistakes//say/do the wrong thing again" which I have only ever had "a little bit" of.
Let's say we can still all be friends together eh?
Dear Paula-38 ,
I’m sorry you feel out of place. It’s understandable. Maybe eventually there will be a sub-group of ES for those who have had lifelong or very-long-term effects of E.
Instead of repeating things I’ve said to you elsewhere on these topics, I’m switching gears. The following describes me, but maybe you can find it useful.
E is not my identity nor my focus. E is another thing in a long list of horrible things that have happened to me and my family. There is no “old me” or “new me”—there’s just me, growing and adapting in the face of challenges. E is not the first nor the last tragedy in my life. I am not minimizing the severity, but I am saying that E can’t and won’t define me. What matters is who I am, not what I can or cannot do. I am a Christian, a daughter, a sister, and a friend. Every day, I love God, family, and others wholeheartedly and as well as possible.
The ES is great, but it’s no replacement for real relationships with God and family. If you’re curious, you could start by reading the Bible, particularly Psalms or Matthew/Mark/Luke/John. At the very least, make sure you chat regularly in person with someone who knows you very well and loves you deeply. That’s not to say folks in ES can’t be friends, but it’s no replacement for the deepest and truest relationships with God and family. I’ve found greater love, meaning, and hope in prayer and reading the Bible or talking to my family than I’ve ever had from this website. This is here for a good purpose, but it’s very limited, as I’m sure most on here would agree.
All that to say, of course we’re friends, in the limited and anonymous way that this website provides. I do hope you also have some family or friends with whom to chat in real life, and I hope this response helped a bit. Again, I described my life and ideas, which may or may not apply to you. Take or leave what you’d like.
But do take care,
Kit
I have just come back to this lovely understanding letter from kitknaboodle . I find all of it extremely helpful! Thank you so much kitknaboodle!
Dearest Paula, you are nothing short of a pure blessing. You're so very kind and always offer encouragement on this site. I feel lucky to have your loving spirit in my life. You are amazing! Never forget that! You are an inspiration! Keep on keepin on.
Hi Kit,
Happy Birthday to a precocious 26 year old 🎁🎂🎉🥳🎊.
Birthdays can be difficult times these days I guess. But just to remind you of what you once posted to me. You should be celebrating because you/we survived Encephalitis!
Thanks for the music but it doesn’t need to be my birthday to cry - it’s a daily event 😂🤣
Have a great day 🎈🎊.
Remos
PS - I had my birthday last month along with COVID for a present 😷. Couldn’t find a song that covered this🎧.
Remos , the king of emojis. 😏 But seriously, thank you. Your post made me smile and lightened my heart. And yes, crying is absolutely a daily activity, yet we need celebrate being alive. It looks like you're the only one who clicked on or enjoyed the song link.. I do think it's a nice mantra and inspires some dance moves. 😂
And happy belated birthday! How are you feeling now?? Like Paula-38 said, take it easy.
Happy birthday for yesterday. I hope having had a pre birthday meltdown yesterday you managed to enjoy the extra day. You’re doing so amazingly well and still young, you should be proud of yourself and the way you encourage us in our group.Take care of yourself and keep growing. You get to 9 next year!!
Thank you, Wygella ! As always, I appreciate your comments! And thank you for the sweet compliment. I think we all encourage each other, or at least that's my hope.
After the first time I read your comment, I thought you meant that having a meltdown the day before might mean that I'd be more likely to enjoy the actual birthday. Upon second reading, I don't think that's what you meant, but I do think it might be true. I'm pretty sure Remos has said something similar before... A good cry sometimes helps one feel better, or at least avoid a worse meltdown in the future.
Hi kitnkaboodle and belated happy birthday wishes to you! I agree, a good cry whenever you need one definitely avoids a very big one further down the line (although if you need a big cry, you need a big cry) and I also believe we all deserve an extra E birthday too - maybe I’m saying that because it’s not far to go for mine! PS. At hospital last year I had my actual birthday and for some reason I kept telling every_cloud I was 38 (a year older than I actually was / am). Why would anyone want to be older?!
Thanks for the thoughtful comments, The_Bass ! How will you celebrate your upcoming E birthday (AKA "Alive Day")?!
P.S. Haha indeed, but growing older is better than the alternative... sorry, morbid joke! It is true, though! I try to remind myself of that as I approach late 20s (and the dreaded 3-0) while experiencing such a painful and limited life.
I really don’t know how much I’ll celebrate my one year on from heading into hospital - maybe I’ll have … a beer! The big day for me is the day I came home again (same day as my wedding anniversary) - I already can’t believe how much I didn’t know and couldn’t do properly on that day back - that chap was a very simple version of me … mind you, he could still play The Bass 😉
I hope life isn’t too limited for you kitnkaboodle , especially on your anniversaries - encephalitis-wise or years-old-wise. I find as you get older, every day is the anniversary of something.
Thanks, The_Bass !
Wow, your next wedding anniversary with every_cloud will be particularly special! I hope that day is filled with peace and laughter and smiles... happy tears would be quite appropriate as well!
That's wonderful you retained your musical talent through E. I bet playing and teaching support your recovery very well!
Oh, yes, good point. I'm starting to realize that as I grow older. I am cursed with the ability to remember events and dates even when I would rather not; it's getting worse, as there are more and more bad things to remember annually. But, it also works the other way! 🙃
Actually reading what I wrote again I think I did mean the actual birthday! Darn brain and fingers! You are right too that when those moments come of disappointment because of a crash day and feeling unwell again a cry helps. A little wallow before picking up and carrying on with the warrior part can be therapeutic I’ve been having a rough ten days after a hospital visit for my eye problem. Very up and down and the usual sleep issues when that happens and I have definitely had a cry, as well as trying to follow my own advice of focussing on relaxing, reading, resting and looking at my small but pretty garden. So grateful to all here for sharing how we feel so safely.
Oh, no, Wygella ! I'm sorry about your hospital visit and eye problems. Everything piles on, doesn't it? How are your eyes feeling now??
Thank you. Up and down. It’s just my left eye thankfully. My right eye is strong. I’ve had two ops so praying I don’t need a third!
I’ll pray for that as well! ♥️
Thank you.
By the way. I find birthdays quite stressful too because other people want to do lovely things that often I feel pressured to ‘enjoy’. My 4th E birthday is in August I find that's more cheering as I realise the massive steps I’ve taken in my recovery.
Oh, absolutely, on both counts: There is so much to celebrate, and we have so little energy to do so, but I do hope you can celebrate your progress in August. It really is spectacular! ✨
Regarding your first point, my family always wants to do so much with each other, and my birthday was no different. But, months ago, I quit trying so hard, and now it's better. I refuse to do most things or go most places, and I set all of the parameters for home visits. My life is very limited, but I avoid more crashes now.
It’s odd to celebrate something so life threatening and changing. But I do. Each year I know even with ups and downs I’m stronger.
And you are so wise learning to set your own parameters on other peoples expectations. I’m still having to learn. But I’m getting there!!! I find peace preferable to excitement these days! 😊
We’re celebrating survival and being alive today!
I appreciate hearing from you in large part due to your wisdom and experience from a longer recovery. It sounds like you’ve learned a lot and recovered quite a bit over the last four years. That’s worth celebrating!
Haha absolutely! I also prefer peace to excitement. At first, I was hellbent on “acting normal.” That failed miserably, and I’ve learned that boring is much, much better for me and my poor brain.
Yep! Our brains don’t like excitement! But I’ve just had a lovely walk in one of our local parks. Peace, quiet, beauty. Very grateful to be here. I couldn’t have done this even a year ago! Thank you for nice comments too. Take care. Enjoy peace as your brain learns to cope gently again.
Happy Birthday for yesterday! I spent quite a long time thinking I was a year younger than I was because I missed my 27th birthday 🤦♀️😂I hope you had a lovely day.
Haha that's hilarious, AliBBeerDrinkerSing ! (Not an hilarious cause, obviously, but the circumstances sound humorous.) How are you doing these days? How many post-E birthday celebrations can you recall?
Yes- looking back in was quite funny. The stupid thing was, even when I knew that my (now) husband was turning 28, I still thought I was 26 🤷♀️ I’ve had two birthdays post-E. the first was a couple of months after I came out of hospital and we were in a lockdown, so I just had fish and chips with my family. I also had loads of presents because I had all the ones that I’d missed whilst in hospital. Then for my most recent birthday, we went out for Sunday lunch with my family and our puppy. I turn 30 next year and have already planned with my husband that we will go to a nice spa near us.
I have a lot of friends turning 30 over the next year with various parties and weekends away, so whilst I want to celebrate, I think something just the two of us will be nicer. Plus we got married last year, so we’ve already had the big party.
Wow, those activities all sound so lovely...but loud! Restaurants, spas, and parties, oh my! 😱😉 I couldn't do all of that. And congrats on your marriage. Were you able to have a real wedding reception? That's awesome
We were! We had a ceilidh (barn dance) in the cricket club opposite the church- I need sneak back to the pub we were staying in for a nap though! 😂
That sounds (and looks) so fun! I looked up pictures 🙃
Happy birthday! I think you should have 2, absolutely.
Thanks, LiLuMi ! I celebrate October 18 (the day I got sick) as well! I find it quite meaningful.
Well, looks like I am a week late and 7 dollars short, but happy belated birthday to you! Sounds like all went better than you had anticipated, which is always a good thing! One year from now, you may find that things have improved quite a bit more than they have for you, up to now. You may also find that you can do things you believed to be impossible, after your bout with the big E.
Nowadays, I don't celebrate birthdays too much unless I convert the number to hexidecimal. Though I am normally 58, in hex I am still in my 30s, 3A to be exact!!
Hoping that your second year finds you improved tenfold over the previous one!
OldGnome, imaginary 30-something! 😆
Hey, OG. Long time, no chat. Hope you're well. Thanks for the birthday and well wishes! I'm wondering what kind of impossible things you've found you can do after E? I think mine might be not caring about work/education/money or what strangers think of me 😅😂
It's been very busy for me lately with a burst of doctors' appointments, home repairs, etc. I find that as time goes on, I am doing more and more things that were not possible back in 2018. They seem to "creep up on me" and I have to realize that improvement is actually taking place. During my first 2 years of recovery, improvements were very easy to notice since I had lost most of my basic functionality.
Today, I am approaching "being normal again" in ways that I did not think were going to be possible. At this point, it seems like the road to improvement has gotten much steeper, but the prize is well worth the fight, to me. In some cases, it is also a responsibility that I must be careful with.
The prime example has happened where I work my very part-time hours. This is the time of year where high school students graduate and are moving on to furthering their educations. For those who desire to persue a career in the electronics/technology industry, my company offers a program that works with students and educators. These are basically kids right out of high school who have never set foot inside of a manufacturing facility. It can be a very daunting experience for them. It is customary for the company to select one person to be a mentor, and the candidate spends the day "shadowing" the technician.
As you might have already guessed, I was chosen to be that mentor! I asked the person who selected me, if that was a good idea?? (He knows of my entire journey with the big E.) He said he thought it was a great idea, so off I went to meet the new person.
Initially, I had to make sure this person was comfortable, and made sure he knew that any fears/anxieties he might be having were unfounded; he would do just fine, so don't worry!
Then he watched and learned quite a bit in a few short hours, of what it was like to work in a factory, including the break bells!! I adjust what I teach according to my perceptions of the candidate. This one was doing very well and I actually taught him some basics of using a digital oscilloscope to adjust a portion of an actual production circuit board!
The day went well, and for the next couple of days, I worked with the candidate even more, this time discussing some of his personal goals and even what day-to-day life outside of the job was like.
This was a lot of responsibility. The impressions made on someone so young and inexperienced will last forever, so I had to be careful. But all went beyond expectations, and I learned that my "bar of limitations" had raised significantly, without my realizing it!
And this is one of the things that would have been impossible back in 2018. I still shake my head in disbelief, and that's a good thing!
Once again, my post is as long as a thick drugstore novel, but hopefully, others will see how someone in year #5 of recovery is making out. Some may improve better or worse than I have, but the goal is to share some hope with all.
As you forge ahead in your second year of recovery, realize that this may also be a tough year, but that things will likely get much better as time progresses. I look forward to hearing your future tales of improvement and victories, no matter how trivial they might seem to be!
Fight that good fight!!!
OldGnome
Wow, OG, this is INCREDIBLE!! I am so thrilled for you and your mentee. How did you do after the fact? Pain, fatigue, headache?
I think you've mentioned a major goal of yours is to return to work full-time. Does this experience make you think and feel this goal might be slightly more possible one day?
Hello again kitnkaboodle! Seeing your other post, I would recommend one bag of chocolate chips, instead of gambling ones!!
It turns out that the mentoring thing will be ongoing, to some degree. It wasn't just a one day event. I did get some of my old "head buzzing" sensation, and had one particularly bad day of fatigue, but now I know how to deal with it. The thing is, I am using equipment and solving complex technical problems that others cannot. I am not trying to belittle anyone else, simply pointing out that my brain can do things it could not do before. Compared to a short 2 years ago, I can easily do FAR more than I used to be able to.
However, to get back to work full time, I will need to be able to do this for 5 consecutive days, and still be able to run my house. This is not remotely possible now, but with goals/dreams to push me beyond a given limit, I might just get there one day!!
Luckily enough, my company has MORE than invited me to work more hours, as I am able to! This will cause a conflict with the folks from SSDI and I can't mess around with that until I am absolutely sure I can do it. Being homeless as a result of being bold is not something I would like to do!!
But things are getting better. My home electronics lab is coming together too, with a brand new digital oscilloscope!!! Woo hoooooo!
Hopefully I can figure out how to use the online meeting thing soon too!! Take care and hope the week treats you mercifully!!
OldGnome
That's awesome, OG! So stoked for you! On the ES group call the other day, we were talking about returning to work. Someone said it has been very difficult for her; she returned after only six months out of hospital. Maybe returning to work is not an accomplishment in and of itself. Maybe it is only worth commending and celebrating if it has overall net benefit to the individual. Our work culture is corrupted, and our health and well-being minimized. I am so glad you're not trying to push yourself beyond your capacity. I commend you for taking it slowly and listening to your brain and body, while still moving forward and encouraging yourself to gradually improve. Not to mention the SSDI stress...
Hi happy belated birthday. I think of here like a virtual AA meeting.Some people have more chips than others but whether its a good day or a bad day it helps to know you are not alone .x
Thank you! Haha I haven't heard that metaphor before, and I'm not sure I understand it in this context. Do you mind elaborating?
AA is group therapy for alcoholics. They give you a gambling chip for every year you are in recovery. Bit like here re each year post E but we all try and help one another.
Oh, gotcha. I got E in October 2020.. looking forward to my second chip haha
Hi Kit and a happy belated birthday! As you requested some time back here is a You Tube to Mp3 converter that may work for you getn.topsandtees.space/JGjd... are lots available and newer and better versions keep coming along.
Best Wishes G2
Thanks, G2! You said you probably wouldn’t remember to share this, but here we are. Your memory is better than you think 🤓
Hi Kit, I hope things are moving along for you too. Plenty of sleep seems to help with brain repair and my tens device helps with pain relief but I'm still finding short term memory loss. As we say here, I'd forget my head if it wasn't screwed on. G2
Haha I get that... 🤯 Absolutely, sleep works wonders! I did look for the TENS device, but it'd cost a lot to ship one across the pond. Glad it works so well for you!
The ones I get come from Amazon, don't seem too expensive.
Happy belated birthday. Marking anniversaries is important in my view. Here in our home we have marked both the first and second anniversary of my partner’s encephalitis. It’s a reality so why not celebrate that things are getting better? Now more slowly than at the beginning but things get better.
I hope you feel that and congratulate yourself for the hard work you do in recovering. Happy birthday.
Thanks, Tuesando, very true words—I appreciate them and the birthday wishes. Although our lives are difficult (both as survivors and carers), every little and big thing is worth celebrating. It’s easy to forget that when one is overcome by pain and limitation, or watching a loved one experience it.
I hope you and your partner are doing relatively well.
Take care,
Kit
Meningitis/Encephalitis- My Journey
