I've been like this—deathly ill, merely existing, painfully recovering—for 500 days. Not even 6% of my lifespan thus far. A drop in the bucket. I sometimes wonder how many days of my life will be spent in pain and with severe limitations.
Would you believe me if I said I truly am grateful for my life?
Yeah, some days I don't believe it either.
But, deep down—VERY deep down—I do.
Thank you for being a part of my journey. You've helped me more than you could know. Here's to the next 500 days and beyond. ✨
Hi Kit, thank you for your post - a lovely song from a great artist. I was thinking the other day that when bad things happen and I get sad or upset, that emotions seem to get in the way and make life more difficult.But when I hear songs like this I realise I'm not the only one to feel downhearted and that emotions are part of being alive, sad or happy.
Pets and other animals feel emotions too.
As you say it's all part of being alive and that itself is a miracle.
Yes, how we feel and think about something can make it better or worse. Subjective experience is powerful. The scale of my daily life has shrunk to the minute, hour, or day in terms of coping, and widened to months and years in terms of recovery. I have better and worse days, but I try to leave the stress and pain in that moment. I don't want to carry the weight of my life (and the world) on my shoulders. I try to remind myself that my life is a miracle, not a tragedy, and to count my blessings, not my grievances. Nonetheless, dates and milestones have always mattered to me, though, so I naturally keep track of those things, whether or not they are meaningful or effective... what does "500 days" mean, anyway?
Hello kitnkaboodle, hope today is treating you better!!
Yes, there are some rather lousy days, and some better ones thrown in. I also have "days like this", although I will do my best to make sure others don't see how badly I feel.
Next month, I begin year number 5 of my recovery, already!! At this late stage of year number 4, I can do things I was never supposed to be able to do. I must stop myself from trying to do things I still can't, though. Will I ever get back to 100%? I don't know but I really don't think so. The trick for me, is to identify the things I really enjoy, and put time/effort into those things. Music is one of them, which is why I am investing some rather large amounts of money into a high end audio system. And when I fire the system up, it is worth every penny!
I remember that Van Morrison song from some years ago. The way my brain now works is sort of strange now. When I saw the lyrics "days like this", it reminded me of another song called "Mama Said They'd Be Days Like This" by a group called the Shirelles from 1961. Then that sparked a memory of my much younger days, cruising around in my black and white 1956 Chevrolet, while songs like that played over the add-on cassette deck!! I sure miss that car; it was VERY fast, but I won't bore you with the mechanical details such as the 3/4 lift cam with solid lifters!! Thanks for sparking my poor old brain with good memories!!!
Also while it's easy to get in the dumps for all of us, remember that better days are quite likely. They are on the horizon, they just seem to take forever to get here!!!
Be well and if you can, get some chocolate!!!
OldGnome
Pic of a '56 model 210 hardtop. Mine was a 2 door post.
Thanks, OG! Congratulations on your upcoming Alive Day! Your 5th! How are you celebrating? Five nice dinners throughout a week? Five tools for your music set-up?
You said, "I will do my best to make sure others don't see how badly I feel." Why? Someone asked me last year why I hide my pain. Do you hide yours?
On a related note, what kind of things can you not do anymore? What do you miss most from pre-E life? I promise I'm not comparing our suffering; you're just ahead in recovery, so I am curious how the chips are falling for you at this point.
Happy Sunday to you kitnkaboodle!! (Ok, very late Sunday!!)
YES! That is the song I was talking about!! You would be surprised at how many currently-popular songs had origins decades before them!
April 16 is the day I was admitted to the ICU, so I will make that my Alive Day! I am not celebrating it in any special manner but instead of 5 meals or tools, I guess I can consider the over $10,000 in new sound equipment to suffice!! This coming week, the freight truck with set of subwoofers should make it here. My tractor will be ready, and I have some money put aside in the case that all downstairs windows are broken from low frequency sound pressure! This is all the stuff I wanted as a teenager, but could never afford!! My main speakers are made by the same company that makes the enourmous ones for movie theaters and you know how much thunder they can produce!
There's a lot more to how much sound and music has been such a help to me, but I will not write about it right now. I might accidentally exceed the data limit the servers can handle! 😆
Do I hide my pain? Absolutely! I have pushed myself beyond the limits that many medical personnel said that I have, and continue to work as a senior electronics technician at my job. Though keeping VERY part time hours, working the job forces me to pay careful attention to my appearance, and keep my wake/sleep hours within limits. It also makes me amend my behavior in order to most efficiently do the job that I am being paid to do. I cannot be an effective technician if I am concentrating on how I am feeling. And to a degree, concentrating on something else forces a sort of "reset" on how I am feeling, taking attention away from any negative thoughts. I recently solved a highly technical problem that even one of our customer's engineers could not figure out. Extremely satisfying, indeed!!
I have had days when I was not feeling as well and my condition/feelings were discussed with my supervisor, who is about half my age!! Thankfully, he is a very understanding soul, wiser beyond his 30 years. And I have gotten better, in fact MUCH better, as he, and many others at the job, have noticed!
The thing is, this all happened to me during year number 4 of recovery. During my first 2 years, I would not remotely be able to get back to my job. Nor was I able to, or even willing to, hide my "pain" or difficulties. I simply couldn't. As I recall, year number 3 was when things began to improve a lot more for me, which come to think of it, was when I was able to get back to work. 3 years, 6 months, to be exact.
Things I cannot do any more.....
I cannot work a full time job and the persistent fatigue puts extreme limits on everything.
My L*E*PER status (low emotion person!) means that it is impossible for me to obtain/maintain a relationship with anyone, so I am slated for a remaining life of solitude.
What I miss most about life before becoming an E-Peep, is pretty much aligned with what I cannot do any more. Work a full time job and share the life/company of another, for the most part.
This is going to sound strange, but in some ways, having the big E brought about some positive changes. I now have a deep sense of empathy that I never had before. People who never even said "hi" to me at the job, are confiding in me and discussing some rather serious things they are going through. I listen well, and we try to come up with possible solutions to things. Funny thing is, they often work!! So, in some respects, I have changed into a sort of kindly/wise counselor. Being in a coma for 3 days and having a near-death experience will do that, I suppose!!
And that's enough of the serious talk. I'm thinking it's time to fire up the sound system and listen to some completely silly music by a band from years ago called the B-52s! Why they picked such a name is beyond me! If you know what a B-52 is, then you know it is anything but amusing! Their songs were complete fun, particularly the song, "Rock Lobster"! We used to try to make all the sounds of the sea creatures too, which was great fun!!
Hope you are having some fun, and if not, throw on Rock Lobster and dance around!!
Hey, OG. Sorry for the delay in replying. I've been more fatigued than usual lately, especially after attending a friend's wedding last weekend. I made it through the ceremony and dinner, using earplugs most of the time. It was difficult, and I paying for it now, but I am glad I went.
It's awesome you're able to enjoy music, and that it has helped you in recovery! Dancing helps me a bit, especially to songs like the one below, but I can't handle most music and noises. Certain types of music make me involuntarily spaz and convulse--like "Rock Lobster" haha!
It makes sense that you "hide" your pain at work. I'm glad to hear your supervisor is understanding. I hide from my school/program entirely and don't talk to anyone from there. I haven't officially quit yet, but it's on the horizon. It's just another loss that I'm learning to accept. I understand the chronic fatigue. I'm getting better at managing it and gauging what is within my capacity at a given time, but it is still frustrating to not be able to do everything I'd like to do... like school. Granted, fatigue is not the only reason I can't/won't go back to school.
Typed messages like this are limited, but you don't strike me as a low-emotion person. Maybe you try to infuse more emotion when typing? Others confide in you and seek advice, so it doesn't seem like you're some inhuman robot! I don't think you should give up hope on another relationship, or at least friendship. Just always be honest, and someone might understand. I could say (and have said) the same thing: That no man would want to marry me, in all of my pain, limitation, and disability. You would say (and have said) that's not true. Why don't you believe that for yourself as well? Yeah, yeah, we're in different circumstances, but there are older women who are also looking for someone. They have their own stuff. Maybe, just maybe, your stuff and her stuff would align, and you'd understand each other more than others do. And, if not, that's okay; we already have perfect love in Jesus!
Hello kitnkaboodle, I can't believe it's already been about 2 weeks since your post to me!
I played the video you listed while I was tuning and calibrating the subwoofers and let's just say, my whole house SHOOK with the low notes!! Whew, I really had to tone them down to a more reasonable level after that! The song reminded me of some of the stuff I listed to in younger years that were also considered to be "electronic music" such as Kraftwerk, or The Residents. All in all, a fun listen!
I deliberately took this time to do a sort of "audit" of myself, with regard to my statement of being non-emotional. My posts sound like I am a jolly person of sorts, and internally, I guess I really am!! I might be having a tougher time with the memory/processing when I am dealing with people face to face. I believe I am getting better at this, though.
What's missing, are the feelings of joy I used to be able to have. Accomplishing some difficult things, or for instance, getting the sound system of my dreams are things I acknowledge with a sense of stoicism. I suppose this is better than having ups/downs in extremes, as can be the case in manic depression.
So, I thank you for sharing your thoughts! They truly have been helpful in getting me focused in areas I need to pay more attention to.
Hey, OG. That’s awesome!! I’ll check out those bands. There’s a dance that goes with this song as well, although most do it incorrectly. Link below. It’s a part of my PT 🙃 A doctor told me to dance every day, and it helps, with mood at least!
That’s understandable! E can affect the emotion system in either direction. I mostly hear about E peeps becoming more volatile or manic. That was me for the first part of recovery, especially when I still had brain inflammation. Interestingly, I think most of the emotional volatility was because I was trying to do too much too soon. When I slowed down and accepted my limitations (still working on that), I calmed down. All I can say is — my brother and sister truly love me. They have had to deal with the worst parts of me. 🙈
I still don’t know if I’m considered a Millennial or in Gen Z, but here’s classic Gen Z for you:
Hi Kit, it's sunny and dry but still quite cold here in the UK - about 6 degrees C at night. No wind here even though we're 600 feet above sea level. All is quiet and peaceful where we live and as it's a Sunday hardly any traffic.
Here's another olden but golden: bing.com/videos/search?view... anthony &shtp=GetUrl&shid=0675e25d-4e1a-42d9-9713-f178fec4daeb&form=VDSHOT&shth=OVP.0U95Aekv8-Rp_jhShmpG4gHsFo
You think 6 degrees Celsius is cold?! It's regularly well below 0 C here, and even sometimes below 0 F. Right now, it's snowing and about -7 C. Granted, we're about 5000 feet above sea level. I do like the cold weather because there's less traffic on those days, especially Sundays, which makes my walks more pleasant. Have a lovely evening on the other side of the pond!
That's a good oldie, G2! I actually had the original 45RPM record of it done by Little Anthony and the Imperials from 1959. I used to try to sing along, but could never hit the high notes!!
On a side note, I read of fish and chips on some other posts, and although it is considered to be a common dish, hearing of it made me want some! The local stores were out of frozen fish fillets, so I ended up buying 120 fish sticks, cutting up some potatoes, and making good use of my new deep fryer!! (No I didn't cook all 120 at once; I just wanted to make sure I had an ample supply to satiate my appetite for fish and chips!) Then, a week later, the fish fillets were back in stock so I purchased 30 of them!!
No malt vinegar, but the Heinz ketchup and tartar sauce were used in larger amounts!!
Hope everything is going well for you and that things are starting to warm up in the UK. Here, it topped out at an amazing 23 C!!!
Hi OG, Little Anthony crops up on YouTube quite a lot and still singing late in life. Very emotional and restorative. That's a fine looking motor you have there - looking good and hanging tight. I'm pretty sure I can hear your sound system over here.
I've been instructed to do nothing for a while as things have been getting hard to bear. When one can't do the old things one used to do it's like a prison.
A rehab psychiatrist came round yesterday and said lots of good things but by the end I was exhausted again - just from talking. I'm on a new anxiety medicine which should improve things.
Your fish and chips sound like quite an adventure, you sound very creative and bold. Wine vinegar works Ok I imagine. They say to fry the chips and fish twice for a real crispy texture.
An odd reaction has surfaced since my breakdown a few weeks ago. I stutter and stammer quite a lot and sometimes pause part way through an action like when reaching for a cup. I forget what I am trying to do and remain still for a while with a hand in mid-air until I remember what I'm doing. It's quite peculiar and tends to make me laugh aloud.
I laugh quite a lot when in pain or confused and find everything hilarious but on the other hand I was trying to figure out if I would be killed if I jumped out of my 2nd floor window - or just injured and worse off. Thankfully I thought my way out of it. Ha, it's a roller coaster.
This post-e journey is quite a roller coaster indeed!!
At the moment, I am sitting down for a bit after doing some rather ambitious cooking and cleaning of pots and pans!
Everything is prepared for the arrival of the subwoofers tomorrow. They are arriving by freight truck, so I had to make sure my tractor was up to the task!
I will be writing a bit more with regards to your other comments but tonight I have run out of time to do so! I have enjoyed our conversations here, and in some ways you have influenced my behaviour when I am at the job! One day, I made a point of using the term, "blimey!" as often as I could during the day! We also discussed the delightful aroma and flavour of fish and chips! Some people asked if I were planning on moving to the UK! Although I have thought about it, it might not be a good idea. As I said before, I might be arrested for speeding in that Caterham 7 whilst attempting to pick you up for a ride!!
Hope you find something fun to do today, no matter how trivial it might seem!!
OldGnome!
This is me when the big e taunts me with my afflictions and limitations:
Hello again G2!! Things have finally settled down here for the moment, although a major snow storm is taking place as I type this!!
I wanted to tell you of a med that I am taking that helps me tremendously. It is called Buspirone, 10mg. I can take as many as 3 per day, but take only one in the morning with my other blood pressure meds. You may have already tried this one though, and if so, I apologise for presenting useless information!
It sounds like your bout with the big-e was worse than most who post here, which truly saddens me. Sometimes, I refrain from posting my successes, believing that others might read of them, and wonder why they are also not improving.
We are all brothers and sisters who share the experience of the big-e, it's just that the after effects can linger longer for others. I hope that you can progress with a good level of success with regards to improvement!
Unlike myself, it sounds like you have a best friend who stands by you in all things; your wife! I hope you both can find something fun to do, and appreciate each other's company and dedication to each other. This is truly remarkable to someone like myself!
OldGnome
Here's a pic of some fried frozen fish fillets, but no chips; I ran out of potatoes!!!
Hi OG, always good to get your posts and those fishes look fine. Buspirone is something I haven't heard of, my GP has prescribed Quetiapine 12.5mg and it will take a while to get started, it seems to be having a positive effect so far ...... How they can target the problem of deficient chemicals and correct them with medicines that I can't even pronounce is amazing.I don't know if I've hard a worse time, it's hard to compare. A lot of the suffering is emotional and this can be triggered by the memory of past events. But Enc. is a plateful on its own 'My cup overfloweth'.
Our latest success has been a one and three quarter mile walk round the local area. We go around every night if there has not been a big event during the day (such as an appointment, 200 strokes on the rowing machine, a bath!, a social visit or a rehab assessment). Exercise is good for the mood, metabolism and physical strength.
My wife is great, definitely one in a million. I wonder what she sees in me these days and she insists I'm marvelous! If not on a nightly walk we play dominos of an evening and this is great fun. Sometimes she dissuades me from trying out risky stuff and she probably knows best. Cycling and basic rock climbing are still something I'd like to get into again.
If I was on my own I'd be letting a room out for free to a nurse who could keep a little eye on me in lieu of rent. I live fairly near an NHS teaching hospital and the nurses suffer from low pay and oddly timed shiftwork. All great people and deserving of a break.
Hi Kit, I reckon if we live to 70s there are 7 days in a week then if Monday is the first ten years then at 72 I'm on an extended Sunday and you are halfway through Wednesday. Thankfully we gain in wisdom and experience and don't make the same mistakes again (or at least too often).
You are in your prime and have been great company on the forum and I'm sure will be able to support others as new recruits arrive. Ha! what a crazy set up, but here we are. 🎵Best Wishes G2
Hey, G2. I've been following your above conversation with OG. You and I are experiencing some similar things lately: unbearable fatigue (hence the delay in response), stuttering and stammering (which is new for me), feeling like I am trapped in a prison (just said that to my brother yesterday), thinking death is preferable, and trying to take some walks and converse with others, despite the challenges.
You quoted Psalm 23 ("my cup overfloweth"); the context is an overflowing bounty, with God providing for every need. We can trust in Him. Psalm 23 is one of the passages I recited while in hospital. Even when I was out of my mind and didn't keep any memories of the hospital, I remembered Scripture.
I appreciate your analogy about day of the week to length of lifespan, but I'll say my body thinks my week is over. Countless people have lamented the fact that I got sick when I am "so young" and that it's "so unfair." Life is unfair, and E can happen to anyone at any time. And, anyway, I sure as hell don't feel young anymore. As two of my siblings say, " the youth has been sucked out of me." They mean that emotionally, referring to watching me suffer and being responsible for me, while I mean that physically.
Your wife sounds lovely; it is heartwarming to hear how you two support and care for each other. How long have you two been married? I attended a part of a friend's wedding last weekend (and paid for it dearly). One set of the grandparents has been married for 62 years. Incredible.
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Unknown Cause Encephalitis
A very happy (and long-overdue) update
A comeback is possible
