Captain's Log
I've debated with myself for some time whether or not I should share any real aspect of myself on a public forum like this. I am actually a very private person, despite the false impression I may give people I meet. I have trouble being vulnerable with even my closest friends. I cloak everything I do happen to share with humor. I think the anonymity of this platform can help me.
I'm always learning and improving. My goal is to make every year better than the year before. Trying to always be more emotionally intelligent and kind.
Testing, testing!
@2aphod8eeblebrox I can not for the life of me post anything here for the past MONTH. wtf let's try:
[[This was written a little while ago, I'll update again soon - today is actually day 99!]]
Well, hello again. I have to tell you that on January 4th, I had An Event. Today is Day 70 of The Event. Doctors are still figuring out why this happened to me, exactly. It's called a CVST - a Cerebral Venous Sinus Thrombosis.
It came out of nowhere. One day I had a neck ache, which I assumed was because I slept on it wrong. It became a headache, so I went to bed early to sleep it off. And then, I didn't really wake up. I was too disoriented the next morning to get out of bed and go to work, and also too disoriented to realize something was very wrong. Thankfully, it was a work day, and my boss and coworkers were very worried about me (it was very unusual that I wouldn't show up for work or contact them about it.) So my boss sort of saved my life by looking up my parents' contact information and reached out to them to check on me.
Hi there @2aphod8eeblebrox. Oh my! I feel so concerned about you after reading that you had CVST. It's my first time reading about CVST and, from your description, it sounds like a rare medical condition. It's good that your family, partner, colleague, and even client care so much about you. Know that, even though we only chat here, I also care about you and wish for your well being.
I hope you'll recover
fully from this condition. If you need emotional support, feel free to
let me know and I'll happily chat with you in your thread.
@2aphod8eeblebrox Hi there, my friend. How have you been? It's been a while since you posted. I'm concerned about you. I hope your recovery is going well.
Do let me know how you are doing if you feel comfortable.
@brightPenguin4569 Thank you so much for these words. Life feels so different now, my habits are all upside down. Honestly I have been logging into 7cups from time to time, I just could not find my Captain's Log! That, and I haven't had much interest in reading or writing outside of necessity anymore. But I have finally prepared a post for today's entry.
I think of you often, Penguin! Don't work too hard.
@2aphod8eeblebrox Hi there. I'm sorry to hear about aphasia and how your sister reacted to CVST. I really do hope that the aphasia will lessen over time and that your sister will eventually return to be in touch with you. Sometimes, people are intimidated by a problem and they ran away -- but that does not always mean that they don't care.
My heart feels warm when reading about your colleagues, your mother, and your partner who were there with you during hard times. Those people are rare! It is those simple pleasures of sharing with the people you love that makes life worth living. I hope you get to spend more quality time with them.
Hello Day 321!
A few weeks ago I woke up with some pain in my neck. I figured I had slept in a bad position and went on with my day, which included me and my roommate going to a fancy steak place to celebrate over 300 days of "wins" since my CVST event in January. It was a lovely night with great food and drinks.
The next morning I woke up and my neck felt worse. So much worse, in fact, that I became frightened. I contacted my mother and my partner to inform them about this, but they had little concern. All the doctors on my case had cleared me of any risk months ago now, this was probably just a pinched nerve or tweaked muscle. I agreed that it was probably nothing, and while I don't exactly remember the specific pain I felt in January, this was similar enough that it was giving me flashbacks.
Monday morning it didn't feel any worse, so I calmed down a bit. In January, the pain got worse and worse each day over the course of 3 days, and the pain was closer to my head - this time the pain seemed to be subsiding a bit and wasn't very close to my head at all. Still, I emailed my doctor and asked how I might go about setting up a scan just to check that everything was OK.
The doctor got back to me quickly and I saw him that same day. It wasn't my usual doctor, since she was on vacation that week, but this doctor seemed good. He checked for any signs of a stroke, but I had no symptoms other than mild to severe neck pain. He ordered an MRI for the next day and told me to go to the hospital if the pain increased.
By this time, my partner and mother decided to worry about me. They texted me hourly to check on how I was feeling. I told them I was getting a scan the next day if they'd like to come with me to the appointment. My partner would be at work but my mother said she would keep me company. I was still scared about the possibility of spending more time stuck in a hospital bed, but otherwise I felt good about taking steps to get this checked out.
The next day, I got the time and location for my MRI and I sent it to my mom so she could come, but she didn't respond. A little bit before I had to leave for the appointment, I texted her again asking if she was going to meet me there or pick me up, and she responded with surprise, as if she hadn't indicated 12 hours before that she would come with me. It was bizarre, and felt like again my family had no concern over this. The pain continued to subside but it still hurt to move my head.
My roommate was much more supportive and came with me to the scan appointment. The staff there told me they would reach out if they discovered anything unusual, and I left after the MRI was finished.
I heard no news until the following afternoon, which I figured was good and meant that they hadn't found any anomalies. My doctor called me around noon for what I assumed would be a "all good, nothing found" call. Instead, he told me I had 3 blood clots in 3 different veins in my head. He sounded scared and said I needed to start my blood thinners again ASAP, which I had thankfully kept from my last batch.
I felt so vindicated. I trusted my instincts and took the necessary steps to resolve any potential problems. Obviously I hoped I was overreacting, but I did not back down even when my loved ones didn't take this seriously.
I had the scan results sent to my trusty hematologist and went directly there without an appointment. He took a massive amount of blood for testing (10 vials!!) and told me that he had never seen such proactive action in his 25 years of practicing, and that me and the doctor who ordered my MRI's so quicky saved my life that week.
I'm going to be fine. In fact, I'm already fine. I was able to catch these 3 clots so quickly, they never had the opportunity to affect my cognition this time. I will be on blood thinners for the rest of my life, but I also don't need to spend any more time in a hospital bed, and that's the biggest win I can ask for!
I'm starting a lot of sentences with "I" in this entry. The only people who validated my concerns that week were my doctor and my roommate. Everyone else had too much going on in their own lives to even extend a simple acknowledgement of why I would be so scared of this neck pain. Nobody came to visit me until after I got the MRI news on Wednesday, and by that time I already had a plan of action and my fears of being stuck in the hospital again were assuaged.
I needed hugs on Sunday, Monday, and Tuesday, and where were they then? By Wednesday I had found my own solution, continued to manage my feelings about it while injecting myself with blood thinners twice a day, and on top of that I now had to be an emotional support for my mother when she finally clued in to things being not ok?
Obviously I feel pretty hurt and insulted right now by the way my loved ones acted (or failed to act) during this time (which I call "Season 2" of my brain problems).
Anyway, here's to another several months of doctors being confused by my situation. Those 10 vials of blood all came back normal. There is still no clear reason why these clots happen to me, and all from veins in my head. Welcome to Season 2!
@2aphod8eeblebrox Hi there. Sending you virtual hugs from here! I'm so sorry to hear that your doctor found blood clots again. I really admire your decisiveness in going to the doctor and getting checked.
If I may add, please try to forgive your mother and partner for "failing to act". I hope you'll forgive me if it's not in my place to say it, but I'm sure they love you. Their failure to act is an error in judgement, not ill intent. It's difficult to find someone who truly loves you. I hope you'll love them back, despite of their errors.
I hope you'll recover soon, my friend.
@brightPenguin4569 Thank you, Penguin. You really are bright. I know they made an error and I know very much that they love me. It's just one of those things where you have to be there for yourself sometimes, nobody can rescue you but YOU.
@2aphod8eeblebrox Yes! I'm with you on that. There are definitely times when you can only rely on yourself, since nobody understands us better than ourselves. After all, most of the things we think about, we don't talk about with other people; even things we talk about are often misunderstood.
Sometimes, when I think about this "impassable space" between people, I also get sad. It's a pity that we can't understand our loved ones 100%.
Day 335.
As time gets closer and closer to January 4th, I think I should take a moment to figure out my mind. My partner doesn't believe that I have spent enough time "processing" my feelings about what happened. That might be true, and it might not. I've spent a lot of my time thinking about and feeling about my experience this year. I almost think I spend too much time ruminating on it. I wish I could just forget the whole thing.
But sometimes I have flashbacks to the hospital and sometimes (like last night) certain things remind me of that time and it upsets me. Last night my new roommate asked me why I didn't know where we kept our holiday decorations, and I had to think about the fact that my other roommate had to take everything down themselves because I was stuck in the hospital, so I didn't know where it was. That feeling of lost time really upset me in that moment. I ended up going to bed because I couldn't seem to calm down about it.
So let's try lists. Lists are nice.
When I think about January, I feel
- fearful
- confused
- confined
- sad
- angry
- grateful
- disappointed
- proud
What I can't control:
- How my brain works day by day, minute by minute. How I respond: Give myself patience. Laugh about it.
- People's behavior. How I respond: analyze my needs and set boundaries accordingly.
- What happened in January. How I respond: ????????? Apparently not great???
What I can control:
- Exercise
- Breathing
- Chores
- Making things
It's all lies. I am so upset and unhappy. I am miserable. I don't know how I've had this year of denial that my life hasn't been ruined by this brain problem, but it has been absolutely destroyed now. Why even bother pretending that I'm going to be fine? My life ended on January 4th, and I've denied it ever since.
I had two seizures on Thursday. Nobody bothered to tell me that that would probably happen. Now I can't drive and everyone is treating me like I'm an imbecile. The doctors are the imbeciles. They can't do anything right with this. Everything they could or should have done, they didn't bother. They won't even see me anymore.
I am going to get off of this new medication. I am going to drive again. They can't stop me. I will not let them stop me. I am so sick of this life. It isn't a life. I would rather be dead than live like this.
I am so sick of being pitied. I am so sick of people saying how iMprEsSeD they are with me. *** all of this. How is any of this fair? What did I ever do to deserve this??? I hate my life. I can't control a damn thing. All that *** I said I could control, "exercise, breathing, chores, making things" none of that is true. We can't control anything in our lives. Things just happen and people make decisions for you - the wrong decisions.
I don't want to do this anymore. Where do I sign off?
@2aphod8eeblebrox Hi buddy. I don't quite know how to respond to your latest post. So sorry that things have been difficult, but please hang in there! If you'd like to talk to me, I'm open. We can set up a new thread where we can reply to each other there. Sending warm hugs to you.
Thanks @brightPenguin4569
This morning was the first morning since the 14th that I woke up and didn't immediately wish I hadn't. Sometimes I can manage to talk myself into a better mood, but that usually takes the whole day and involves avoiding the outside world. Someone will inevitably call me and *** me off with some comment about how they "forgot" I can't use my car, or that "boohoo" they hate traffic, or have I ever thought about praying to some imaginary god or another.
My partner does not want me to be upset, but they need to understand that I am upset right now, and that is just going to have to be ok. It's been ONE week, I can't delude myself that quickly that I'm fine and dandy. There is no way to pretend that I am happy in any regard. My life is finished. All the things that I not only WANTED to do, but all the things THAT I WAS DOING are no longer available to me.
I was living my dreams, not chasing them. It wasn't a wish or an illusion, it was my LIFE. My life was AMAZING, and I was grateful for it EVERY DAY. And now that's done and gone, and I can't ever get it back no matter what I do. I did so much this year to get back to where I was, only for it to be dashed away again for NO REASON. I did not make one single mistake! Now I almost wish that I had so I could find some reason to blame myself, some thing I could try and fix.
So EXCUSE ME if I'm a little angry at the situation I'm in. SORRY I don't have a smile on my face as my brain implodes on itself.
@2aphod8eeblebrox Hi friend. There's no need to be sorry for how you feel. It's a completely normal feeling! I can't imagine how difficult things must be for you. If you feel that the people closest to you don't fully understand how you feel, perhaps initiating dialogue with them might work. Give them a chance to understand you by opening up (just like you opened up to me in this diary thread).
I really wish that one day, you'll find happiness again even after what happened. I find it really cliche when people say happiness comes from within. There are real sufferings in the world which often prevent people from being happy. However, there are also small moments in life to be grateful for. I hope you'll have more of those, just like when your SO gave you a small beach rock from the coast of Italy last year. You may or may not have the same adventure in the future, but nonetheless I hope you'll allow yourself to have those small moments with important people in your life. As Soren Kierkegaard said, life must be lived forward but can only be understood backward. (Apologies for another cliche here).
Sending you hugs and support. Know that you are loved. I am sorry if it was not in my place to write these things to you. I only want you to be happy.
@2aphod8eeblebrox Hi friend. How have you been? I don't know how to put this the right way, but I'm thinking of you. I hope that you are well! Sending you virtual hugs! 🤗
Hi @brightPenguin4569 hope you've had a good start to the new year.
Six and a half weeks never felt so long. I felt better about everything by around the second week of January. Between Dec 14th and then, any smile I could make would not reach my eyes. There were days I couldn't get out of bed. When friends came to visit I can't say I was very fun to be around, but they did help me to distract myself.
I had built up so many exciting expectations last year that "day 365" would be such a victory. That my birthday in February would be a triumphant party to celebrate that. I'm feeling better now, and I've lowered my expectations.
As of yesterday I am "allowed" to drive again! So I have agency again (for now). Everything is "for now." I'll never forget that again.
@2aphod8eeblebrox I'm happy to hear that you're recovering and gradually having your "agency" back! Again, so sorry if my post in December felt invalidating to your emotion---I certainly didn't mean it. I hope you get to enjoy the present time. Sometimes "for now" is the best we can enjoy. The past is already over and the future is full of uncertainty. "For now" is as good as anything.
I'm also learning to enjoy the present. Though things might feel tough, I'm trying to see that everything is fleeting. At times, I can comprehend this deeply and then I would feel sad about the passing of time. Everything, good and bad, is fleeting and will be gone the moment we stopped paying attention to it.
Sorry about the flowery language there. Just wanted to share something you might find useful. 🤗
Well. Guess I was quite a sourpuss last month. Not sorry about it, I was just being honest. I have worked through it over the past 6 and a half weeks, even my neurologist said I seem much better now. I saw him yesterday and he gave me the green light to drive again - so I have a life again for the time being!
I appreciated that the neurologist acknowledged how difficult it is to live alone without transit. I don't live in a place with public transportation, I had to rely on friends and family when they are available. Thankfully I don't live in the middle of nowhere, so I was able to walk a few miles and get what I needed now and then. I'm glad I can still walk. So glad, in fact, that I took up a new hobby and started roller skating. Have wheels, will travel, right?
Working from home, I had a lot of time on my hands. I would put on my skates and practice while answering emails. As of today I am back in the office. I missed it. I just don't focus as well at home. My coworkers missed me. They brought food to celebrate my birthday.
It felt so good to get in my car this morning and drive away. I've missed that SO much. I can finally go wherever I want, whenever I want.
Having and expressing feelings about things doesn't make you weak. I know I'm not weak. I rotted in bed for a while but I got back up again, didn't I? And I'm going to keep getting back up, and I'm going to walk and read and write and even roller skate until something kills me entirely.
@2aphod8eeblebrox Happy birthday my friend! 🍰 I agree with you. Expressing your feelings and feeling them deeply is a sign of strength!
Captain's Log, everything is upside down and sideways.
At work: All of my co-workers are being laid off except for me. I will be working from home and need to train their replacements virtually - that's IF the company bothers to hire anyone in a timely manner. This job felt very secure until 2 weeks ago. I don't know the books but it's feeling like we are out of money because of some poor decisions from the CEO.
Our CEO (my direct boss) vents to me and asks for advice I cannot give him. My coworkers vent to me and I sympathize. I tell both my boss and my coworkers to PLEASE communicate with each other. I will not be the middle man of this mess. I don't speak for other people when they can speak for themselves. This job was so simple before, now I feel like I do everything AND play therapist to these people. Exhausting.
At home: By the time I get back from work I am so drained, I barely have energy to do chores. I try to make room for fun things, but I am so hungry for distraction that I take too much time with recreation and not enough to keep up with life.
My partner tries to be "helpful" when I just need emotional support. I just need them to comfort me, remind me I'm doing my best. When I tell them this, I'm told that I'm putting "too much value" on words. How can I not put value in my partner's words? I have respect for what they say. Actions speak louder than words, but words do matter. I don't want to feel like I'm being corrected all the time - I do that enough in my own head!
My partner seems to think that being considerate of words is "walking on eggshells." I need a shift in perspective on that, or this isn't going to work.
Overall: I think I need time to reset. I clearly need to find a new job, balance out my life so I feel centered and can get house-chores done in a timely manner. I think I need to figure out how to spend more time with my partner and assess if we are really compatible over time. I'm hoping that my job becoming remote will allow us to travel together again so we can be around each other more often, rather than these inefficient phone calls and texts that don't give us a full sense of each other.
@2aphod8eeblebrox Hi there, friend. So sorry to hear that you are facing obstacles both at work and at home. It's tough to fight two fronts at the same time!
Hope things are OK now.
Captain's log, star date March 15, 2024
My SO has been amazing. We talked it through and the emotional support is now there in the ways that I need it. I appreciate that we both put in the effort to be the best partners to each other.
Work is still insane, but is slowly stabilizing (for now). It will get worse next month when my assistant leaves, but that's a problem for April and beyond.
I've stuck with roller skating. It is so much fun and so good to move in new ways. I went 6 full days without wearing my wheels and it was hard to sleep! I need physical activity every day (whether it's tennis, skating, or weights) to get a good sleep. But I didn't have time this week BECAUSE...
I'm working on getting a new car! I've only ever had older cars, this will be my very first new-car-smell car. I have saved enough that I could pay for it outright, but I want to dip my toes into financing. Because I have such good credit, I qualified for a 20k loan (which is more than I will need) and, since I'll actually make a down payment of 50% or more, my monthly bill will only be $290 - but I plan to pay it off earlier to avoid interest. I'm not in a rush, so I will hopefully get exactly the car that I want at exactly the price that I want. But as we've all learned, nothing is ever guaranteed or even simple, so let's see what happens!
So I should have more time next week after work since all the banking stuff is sorted out, now I'm just waiting for news from my agent on finding my dream car.
I'm so grateful and proud for progressing in life despite pitfalls. Brain problems, hospital bills, insurance drama, I handled the finances all on my own, and leaned on family and friends for the emotional aspect. I've started new hobbies, learning new skills, making new friends. And I kept my job! (for now) - I think I'll be hunting around in April and beyond.
I know there are ebbs and flows to life, but it really feels like the ebbs are becoming part of the flow. They don't hold me back for long, they only accelerate my improvement. But as life "levels up," so do the challenges. Who knows what's coming around the corner next? It's so important to embrace every day - even if "embracing the day" is just resting for that day. I'm so happy that I can still move my legs, my lungs are full of air, my heart beats correctly, this whole system that is my body is still able to function well. Well enough to skate, well enough to bring the laundry up and down the stairs, well enough to travel. And if that ever changes, I want to know that I did all that I could, while I could. What a gift!
@2aphod8eeblebrox Hi buddy. So happy to hear that you're doing well. I hope you get to keep doing what makes you happy (like roller skating). Perhaps this is a little too late but wishing you the strength to bear the increased burden in April when your assistant will leave the job. You got this!
@brightPenguin4569 I need a new job or a raise, is what I need lol
@2aphod8eeblebrox Wishing you a new job or a raise!