Almost a year ago, my then-boyfriend broke up with me. Valentine’s Day was our last real date.
For him, my initial illness was a bummer, the hospitalization was a challenge, the prognosis was alarming, and a pending autoimmune diagnosis was downright insurmountable.
He broke up with me without knowing those test results. (Everything was negative, in case *you* ever wonder…)
At this point, marriage and children seem unlikely for me. It would take a rare type of man to see past my conditions and disabilities. Furthermore, in my current state, I would be very limited in the role as a wife and as a mother, assuming pregnancy is possible.
This Valentine’s Day, let’s simply be thankful for the family we do have. After all, our families went through hell with us, and they’re still here. That’s love. ✨
Hi Kitnkaboodle, so à propos as well look to celebrate "love" day on Monday. I'm sorry to hear your boyfriend could not handle what went on with you. He's clearly not the guy for you. He doesn't even come close to deserving you. I enjoyed the fun song you attached and you are so right, "Love is" those that went through E with us. I experienced just the opposite...rather than a breakup, I got engaged. And we were soon to marry. It all happened so quickly after E BECAUSE I desperately needed to show my family and friends that I was F I N E. "see how my life just seamlessly carries on. I got this, no worries". Wrong, wrong, wrong. I crashed HARD and after spending time with him and realizing our fundamental differences, I knew I could not go through with it—a disappointment to some. But today, I know in my heart that God has a plan for me, for my relations, for my love. Happy Valentine's Day!
Thank you! 🥰 That’s what my family thinks as well. In fact, my brother sometimes has the strong desire to track my ex down and give him a good one-two.
How soon after E did that happen for you? E can really affect one’s personality. I’m mostly myself now, but dating whilst recovering from a life-threatening and life-altering illness isn’t a good idea for so many reasons! Topping the list is the fact that I can’t even go on dates: getting ready and being in public would be too damn hard for me. (And yes, I’ve tried 🙈)
Hi Kitnkaboodle, Interesting question! Since I didn’t know the answer, I took some time to write out a timeline—starting when I woke up 3/8/2020. My, “I’ll show you” started as soon as I figured out: I could walk without a walker or cane, drive without getting lost, shower and dress myself, make 2 things at once—like eggs AND toast. The ability to be comfortable with these things took almost exactly 1 year to the day. 'Whooo hoooo…. I am back, gotta show the world now'. And off I went. Timelines are a blur, but the one thing I do know is I crashed from that adrenalin- induced facade in September 2021 (the adrenalin rush lasted 90 days). When I crashed, it felt (once again like I was on death's door). Frightened, not knowing if I could make it home, I popped pain pills and steroids to drive, making it home in one day. I immediately contacted my doctors and the ES and because of no other choice, I finally got on board with the new reality life presented to me. Today, things a much different.
Hi Kitnkaboodle, Interesting question! Since I didn’t know the answer, I took some time to write out a timeline—starting when I woke up 3/8/2020. My, “I’ll show you” started as soon as I figured out: I could walk without a walker or cane, drive without getting lost, shower and dress myself, make 2 things at once—like eggs AND toast. The ability to be comfortable with these things took almost exactly 1 year to the day. 'Whooo hoooo…. I am back, gotta show the world now'. And off I went. Timelines are a blur but the one thing I do know is I crashed from that adrenalin- induced facade in September of 2021 (the adrenalin rush lasted 90 days). When I crashed it felt (once again like I was on deaths door). Frightened, not knowing if I could make it home, I popped pain pills and steroids to drive, making it home in one day. I immediately contacted my doctors and the ES and because of no other choice, I finally got on board with the new reality’s life presented me.
Thanks for sharing! I am glad you're okay after all that. I hope your family and the former fiancé understood to the greatest extent possible. I find it difficult to explain myself to others, especially regarding the ups and downs of recovery. Just because I'm having a bad day doesn't mean I am not *overall* recovering, slowly but surely. On the other hand, just because I can do this or that doesn't mean I am normal, healthy, and can do what I once did. It took me about a year to accept my limitations, and, even then, I still have days when I bawl and whine... like recently. How are you doing lately? Working on Part II?
I am sorry to hear of what you went through. I was also abandoned and live in solitude now. It takes a while to get over such a loss, I know that. This is one of those "time heals all wounds" things. For me, this is proving to be true.
Now in your case, you are VERY young and the possibilities are still all around! Easy as they may be for others? Nope, not at all. Us E-peeps will have a tougher time at most things in life, that's a given. But don't give up hope and don't get "in the dumps" too much.
As I have learned, it's very easy to get married. It's STAYING married that is the tough part. Divorce is very costly, in more ways than one. Better to be single than having to go through that! As a friend of mine recently told me, "You'll have to be a LOT more choosy with the next one!" Marriage can be summed up in one word, "Commitment". Not many seem to be able to do that nowadays.
I clipped a quote from the church bulletin and have it on my cork board. It says:
Love is not an emotion. It is a decision to be with and for another person in "good times and bad," even when we don't feel like it.
Well, that's enough of my somewhat preachy thoughts. I remember that video from many years ago. They had a lot of imagination back then! The settings and choreography made for a fun video. I hardly noticed the jiggly "vampirettes" in the video at all! (Heh heh, don't believe that one!! 😜)
On Tuesday my plans are to peek around for V-Day chocolates that are marked down to 50% or less!!
And the snow flurries continue here.
Hoping you have a fun weekend and even better week!!
OG, I enjoyed your "preachy" words because they are so true. I agree, Love is not a feeling or fleeting emotion. It is a choice, one consciously made day by day, minute by minute. Love heals. Happy Valentine's Day
Yes! Love heals. But most people can’t love selflessly enough to help the person heal. Some don’t know how to love in the way that’s needed; instead, they do what makes them feel good, even if it doesn’t help. That’s why we need to learn how to identify and articulate our needs. No one can read our minds.
I always appreciate your input, OG. I’m sorry to hear it happened to you, too. Honestly, many people simply can’t handle the throes and tragedies of life, at any age. My ex left because he was young, scared, and selfish. He couldn’t be the man I needed and wanted, and he knew it. He hid out of self-consciousness, just like Adam and Eve in Eden, come to think of it.
Your statement about life being harder for us resonated with me. Everything in life is and will be more difficult for us. I reflect on what I used to do and think, “Wow, I had it so easy. Why didn’t I realize and appreciate that??” Because I was too preoccupied with the next class, scholarship, award, paper, project, date, boyfriend, etc.
Yes, absolutely, marriage is based on commitment, not feeling. My parents have been married for 30 years and are the poster couple for this. I’m glad my ex left when he did because, if I had never gotten sick, we probably would have gotten married, and life would have hit us eventually...what if our kid was sick or disabled?? I’m not sure he would’ve stayed then. It’s better this way.
I observe my generation and mainly see foolish children like my ex. They are entitled, self-absorbed, unaware, and inconsiderate. Suffering is an abstraction to them. I know there are others out there more like my siblings and me, but I don’t encounter them very often. Our brother has been married to a wonderful woman for over 4 years, but the three of us (other brother, sister, me) are going to have trouble finding spouses with our values and level of commitment.
I hope you find some cheap, excellent chocolate today!
Kit, all things are possible. Never ever give up on hope. Hope that the desires of your heart will come to fruition, hope in knowing that there are good, caring, selfless, kind, understanding, loving and decent men out there. Be the best you and enjoy the surprises life offers as surely they will come.
How tragic that this has happened to you on top of all the other trials and tribulations you’ve been through (and continue to go through).
It’s difficult to say the right thing in these circumstances as I know all you feel is abandonment and hurt at the time. But like E, many of us have also experienced this. In my case many times! In fact my heart is now just a scar.
All I can say is it happens but eventually and inevitably someone will appear to sweep you off your feet and once again you’ll be able to embrace beneath your Valentine moon.
Thank you, Remos! I always appreciate your sympathy. Very poetic as well.
Yes, the break-up was insanely difficult last spring, mainly because my brain inflammation had just gone down. I was just out of the acute phase when he left. This time of year is bringing all of it up again. I have randomly started bawling at least 10 times over the past week.
You describing your heart has a scar makes me sad. I hope it still beats? I hope it still loves?
I was reminded of this quote from C.S. Lewis:
“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”
Hi Kit, what a post! plus video. Brought tears to my eyes and memories back. In my case the hurt never stops from dawn to dusk with brief interludes but I'm just having a breakdown right now, (all the mistakes I made etc.) rehab is on my case and seeing nurse tomorrow.Love songs have the most effect when times are hard. But there you go. My current songs are always in mind/head,, Rod Stewart Listen to my heart and some other.
We E peeps need to be strong with whatever we have left. Your ex will no doubt miss you if he has anything about him. You sound great, thank you. Here's some oldsters from my era - on the groove.
Hi G2, sorry you experienced this same heart break after E. Thanks for sharing the song. Throwback is fun. All of us E peeps will have the perfect love at the perfect time. Never give up hope. Happy Valentine's Day.
Thank you Mnt2sea my heartache dates back decades, long before E. 'Heals times all wounds' I'm having a great V's day out for a walk with my lady wife round the area.
Nurse came today with good advice to take it easy, do little things that work out well and avoid the bright lights and hassle. She's great - doesn't say a lot, but her words resonate and sink in, V. Good.
I've got Auto Immune enc. and Hashimoto's enc. Each one is rare and I got both, plus a current nervous breakdown. Ha ha, you have to laugh.
The rehab team have a lot to unravel, but we're getting there and a good night's sleep works wonders. What a ride!
LOL G2, but is your dinghy on the sand, like that one? If so, I am jealous. It's great that you have a nurse that comes to your home. Yes, a good night's rest makes for a great and manageable day. A friend with whom I have a great deal of respect says, and I agree that "simple, stable and predictable" works well for us E peeps. Post E and life in general is a ride. But it's a ride I'm so thankful to be on. I hope wherever you are on this planet that you are feeling love, light, peace, and hope.
Mine is undercover on a grassy shore until I'm judged able to sail again. Our finest day was sailing up Windermere for fish and chips and then back down again. Hurray!
Woo fish and chips sound delicious! Unfortunately, I live in a landlocked state, so they are imposter fish and chips. My sister and I were planning a trip to the UK before COVID and E… maybe one day.
Do you not have any lakes nearby to sail on? Fish and chips is not so special - a Northern working class food that is not easy to cook properly. Chips fried twice and a good batter for the fish. The UK like many places in Europe is changing, traditions overwhelmed by modernity and changing demographics. But there are castles near us from the times when Scots used to raid the North.
"Border Reivers
Border reivers were raiders along the Anglo-Scottish border from the late 13th century to the beginning of the 17th century. They included both Scottish and English people, and they raided the entire Border country without regard to their victims' nationality. Their heyday was in the last hundred years of their existence, during the time of the House of Stuart in the Kingdom of Scotland and the House of Tudor in the Kingdom of England."
Leeds, a large city in West Yorkshire. I was born in the area in Shipley and spent my younger years in Baildon, a small village on the edge of the local moorland (our playground when young). I can still almost see those moors from my back window.
Sorry, I meant which antibody is attacking your brain and nervous system. I have some anti-GAD in my blood, but no CSF antibody has been identified.
"Other forms of autoimmune encephalitis are associated with finding specific antibodies in blood such as VGKC complex (anti-LGI1 and Caspr2), NMDA receptor, GAD, AMPAR and GABA antibodies."
I have two problems one is Auto-immune Encephalitis and the other is Hashimoto's Encephalopathy AI Enc is or can be caused by Herpes Simplex virus, which can be caught from an insect bite, or probably in my case the virus breaking out during a UTI infection (causing sepsis and hospitalization).Hashimoto's can be brought on if you have a thyroid imbalance (a simple blood test will detect this).
That's all I know, exactly which antibody is present I haven't been told.
Thanks, G2! Beautiful music. Most modern music can just be dumped in a bin; it can’t compare to the classic stuff. I’m embarrassed to admit that I haven’t heard enough classics. Any recommendations are appreciated!
Yes, let’s stay strong. There are better and worse days, but I try to simply let myself cry and not criticize myself for having a bad day or not being able to do something (e.g., walk) as well as I did yesterday. We can’t compare today to any of our yesterdays, especially those of our pre-E lives.
And I don’t know if he misses me or thinks about me… I suppose it would be pretty sociopathic of him if he didn’t. Maybe it’s more likely that he scared himself with how much he cared—living with my family while I was in hospital, coming every day. He wanted to be my hero for that time, but, when he realized it would drag on for years, it was too much. And E and I were getting in the way of his big career! Can’t have that.
But you do know in your heart how lucky you are that he's not around despite the temporary pain this time of year brings. Time heals and one day you'll notice you forgot to think of him. I promise.
Well, you should know there is a wide range of 'blues'. I can post a few of my favourites from Beth Hart, Etta James, Lightnin' Hopkins, Them, etc. When you play these on you tube - they usually add a few links to similar stuff. I guess you know that.youtube.com/watch?v=8Wah7Mq...
Lightnin' Hopkins and Howlin' Wolf's lyrics can be quite 'intriguing' and relate to the Haddaway video - documenting passion and desire through metaphor - 'Smokestack Lightning' and 'Down in the Wood' - 'I'll be Back Someday' is another powerful song.
As I sit typing this, I am letting my new audio components take a rest! I ended up buying chocolates from folks at work who have kids in school with the inevitable Easter chocolate sales, so I didn't save any money, but it does support the kids and their school activities!! Hopefully, I can consume the chocolates a little at a time. I believe my doctor is getting tired of my response with regards to my losing some weight. I tell him, "I AM in shape; round is a shape!"
I had to think a long, long time before writing this, and listened to a lot of what I remembered to be the best romantic songs I remember. Before the harder sounding rock-n-roll became popular, and before the U.S. decended into the mire of the Viet Nam War, music was very different. As a kid, I got to play my parents' old 45rpm records and even some older 78s, as well as the 33s. So I got to listen to quite a variety of musical styles and sounds.
After contracting encephalitis, I lost the majority of my emotion and now consider myself to be a "Leper", which is a term I made up, meaning LowEmotionPERson!! However, there are still some things I remember from when I was considered to be a "hopeless romantic" type!
A lot of us have agreed that love/marriage that are successful are based on logical principles of commitment, and the like. However, there ARE some powerful, highly emotional elements to such relationships that are to be enjoyed to the fullest, in my opinion. It's not considered "cool" for a man to be too "romatic" or really express/show the more tender feelings that secretly exist. At the risk of losing points on my "man card" I will attach a link to two songs that represent some of the best songs I have heard.
This first one is by Johnny Mathis, called "Wild Is The Wind". It takes you away to a timeless place. His voice, the haunting background vocals and bass harmonicas are an auditory experience that can touch one's very soul! Even I in my subdued emotional condition, can sense the depth of the song. Hope you find it to be the same, and if so, give a listen to his other songs!
Hmmm, I read through this thread again and now I wonder if I should have posted what I did with those 2 songs. You might have not been wanting to hear such hopeful things at this point in time. I was just trying to share some beautiful music that would be something for your probable future. For the one you are yet to meet, the one you are meant for. Please let me know if the posts bothered you; I will take them down immediately. This is one of the consequences of post-e for me. I sometimes goof when it comes to emotional subjects. I just put a lot of hours of thought into my posts and believed I might have had something different/good to share.
Oh, no, no! Yes, he did ruin certain songs for me, but not any of these. I appreciate you taking the time to post thoughtful responses and find meaningful songs. I've enjoyed listening to all of these. It just takes me a long time to listen to all of them and craft responses, so don't take the delay for disturbance or radio silence. I've listened to both of yours, and I am working through Gandalf2 's suggestions. It takes a lot more than someone kindly sharing music for me to get upset. He's been out of my life for a year, and I think about him less and less. The funny thing is that I don't actually remember most of what he did for me when I was acutely ill... he didn't appreciate that very much haha. Like I said on a different comment, some people don't know how to express love and kindness in the way that's needed; instead, they act and speak in a way that makes THEM feel good. I know that's not what you and the rest of ES are doing. We care about each other simply because we understand the hell of E.
Yes, I am able to open all of the links. I've been trying to find the same version off of YouTube, so I can save the songs, but it seems some of the recordings aren't available elsewhere. I'm loving these so far, though! Thank you for sharing.
Youtube is where I found them, so a search should come up with the goods. I found a way of downloading You tube videos as Mp3s before I went into Hospital but with the memory loss I've forgotten it. I'll have to try some experiments - you can then save them into your Mp3 player or phone.I converted loads of cd's into mp3s as well and it made for better listening on the ward. But YouTube has a fantastic selection, though there are other platforms. I'll get off now - all the best and happy listening.G2
I'll do my best to figure it out but my memory is pretty sparse these days .. Here's another Van Morrison song when he was in Them. Great words and music - Here Comes The Night. I hope it works, may be unavailable but go to YouTube if it doesn't work OK.
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I am glad you're okay after all that. I hope your family and the former fiancé understood to the greatest extent possible. I find it difficult to explain myself to others, especially regarding the ups and downs of recovery. Just because I'm having a bad day doesn't mean I am not *overall* recovering, slowly but surely. On the other hand, just because I can do this or that doesn't mean I am normal, healthy, and can do what I once did. It took me about a year to accept my limitations, and, even then, I still have days when I bawl and whine... like recently. How are you doing lately? Working on Part II?
Thoughts and ideas since starting this trial 
