My daily ramblings
I am finally going to follow the lead and try and avoid posting in multiple different places. I am going to try and do most of my rambling in this thread.
My cognitive issues are making it harder and harder for me to focus on multiple things. That combined with my laundry list of other issues, makes functioning at all near impossible.
Having to go through medication experimentation again is going to make it even harder.
Whenever I have to refocus because I literally can’t remember blocks of time or where I am and why I’m here kinds of things , I’m usually able to come here and figure out through my posts and profile etc.
That has proven to not work very well at times. I wondered if I centralized my thoughts here that maybe that might work better.
That also keeps me from being a distraction from those who are more deserving than I.
@Iamwhoiamwhoami
I love your tree idea. I do a similar thing only with a photo book instead of a tree. It helps me.
Forgive me if I missed the answer to this question, but why do you have such cognitive issues?
@sophia789
Root cause hasn’t been determined. I have had a lot of concussions, last major one actually left a golf ball sized dent in my skull. I have a lot of issues, including obviously severe depression, which this last doctor is trying to blame these severe lapses on.
Thank you for asking, I appreciate your reaching out .
@Iamwhoiamwhoami
Yikes, Iam. That sounds terrible. I'm no medical professional but that sounds significant enough to create issues for anyone. I'm sorry.
@Iamwhoiamwhoami
If you need things to be simple, that is ok. It is not a good thing or a bad thing. It just is. You are not failing if you need things to be simple. Not at all. That is your depressed brain lying to you. Trust me. I've been there.
I feel compassion for you.
Sophia
@sophia789
i spaced out on the tree idea comment, sorry about that.
Thank you , I wish I could get back to a place where I had the desire to complete it.
@Iamwhoiamwhoami
Well, how about this for a start...
It takes some tenacity to write down your thoughts like you're doing, and guts to post them here.
Take that thought, if it means anything to you, and start a pile. Doesn't have to be a tree. Get a kitchen bowl or whatever works for you. I challenge you. :D
Sophia
@sophia789
?? I am a little confused, normal for me anymore, but challenging me to do what exactly? Write the things down on paper that I do here? I tried that and my handwriting is miserable, I can’t read my own words.
Thank you again for reaching out, I am always open to any suggestions or ideas.
@Iamwhoiamwhoami
Oh, I just meant instead of thinking of the tree thing as a huge project, just do this: write down ONE of the nice things someone said and put it in a bowl. Or a box. Someplace you can add more later if you want to. That's all.
I could have said I hope you might try that.
Does that help?
Sophia
I am having extreme focus problems today. Brain has turned off a couple of times but for example…I was typing a post and came to focus staring at the few words I wrote and completely unsure what I was writing.
I just realized another failing of mine.
when I was young, I was considered to be intelligent, now I can’t comprehend simple things.
I will lose something right in front of me… I can have a completely empty white table in front of me and set a dark colored frying pan in the center of it. And moments later have no idea where the pan is. Then proceed to spend the rest of the day trying to find it.
If so I may have gotten upset with the last doctor a little too much. They failed to mention CTE , just prescribed a medication that is listed mainly as for depression. But I have been trying to explore the possibilities that the internet world has to offer and found this info. It fits my situation but am I still grasping at straws? Official diagnosis is only after death, at least everything I have read so far has mentioned that.
What do I do now?
@Iamwhoiamwhoami Did you have concussion events? Can’t they see CTE in an MRI?
@hopefulPond6108 I am sorry I missed this question, no they can't. they can only see it by physically dissecting the brain. which of course means after I die. Thank you for asking though. It feels nice that others are at least curious about it. I appreciate it.
@hopefulPond6108 I am not very focused today either. I have had hundreds of concussion events over my lifetime. most considered minor and several that have put dents in the skull.
@Iamwhoiamwhoami I’m so sorry. I’m sure you have already found the CLF Helpline. The website’s resource center claims their are treatments for symptoms. This must be so hard for you to be facing this as a possible cause.
@hopefulPond6108
CLF?? I don't know if I have or not but I did print out several info pages from several locations. I have done a lot of online research. Yes there are meds that they use to treat CTE but they are completely guessing. they are only treating the symptoms and that by far no guarantee of anything . What little they know about it doesn't help anyone. It can progress slowly or quickly. visible symptoms vary. Those who experience it seek help but like me they start to just handle it on their own because doctors sya that nothing is wrong or blame it on a red flag condition. there is a lot of people suffering from many issues that doctors don't have a clue about and too many just throw meds at a symptom. Which then it is the decide if the side effects are worse than the symptom.
I am thinking of trying to see if I can be a research patient or whatever you call it to maybe get into some trials. I really appreciate you doing a little research and reaching out to me thank you. I really do appreciate it. Thank you.
@Iamwhoiamwhoami CLF is the Concussion Legacy Foundation a non profit. I realize that there may not be cures. The helpline looked like they could hook you up with clinical trial symptom treatment.
@Iamwhoiamwhoami I learned about CTE from the movie Concussion with Will Smith. I wish more people knew about it, especially parents.
If that is the cause, then it is still back to a “maintain” scenario. Medication to just maintain a steadier pace. With the usual side effects worse than the issue that trying to treat.
I don’t know what to do , I can’t continue this direction, yet I don’t have the strength to handle medication trials anymore. Especially when the best case scenario is to maintain.
I’m sure that all the positive people here would suggest doing the medication thing over nothing.
I just can’t make a rational decision anymore.
@Iamwhoiamwhoami
What do you mean you can't continue in this direction? Are you saying you can't tolerate the depression? Are you saying you can't tolerate the cognitive challenges? Can you clarify?
Do you want to just write your thoughts in this thread, or is it okay to keep asking you questions?
Sophia
@sophia789
no worries, ask away.
It’s simply that I have been sliding deeper into this pit of despair and this is the lowest I have ever been and I keep sliding deeper. I believe it was several posts back mentioned with trigger warning I stated where that pit led me to.
Something has to change, I don’t know what or how but it does.
I am “safe”…if that’s what you’re wondering.
@Iamwhoiamwhoami
How are you able to work while feeling this bad? What do you do, if you don't mind my asking?
Can you be more specific about your cognitive issues?
I've experienced a lot of cognitive issues simply from having had very severe depression (from bipolar). It took me a long time to accept that this is what they were from. Some of mine are also from ECT. That's something which obviously wouldn't affect you, but has helped me a lot with my own depression.
Sophia
@sophia789I always have had minor short term memory loss. The past several months I have had more drastic losses of long term events. Confusion of my current whereabouts and actions . In the middle of doing something and brain comes back online and I am lost . Have to try different ways to remember who I am ,etc.,
Work is a major struggle and I am going to lose that option if things don’t change soon.
As far as coping techniques, I am running out of ones that work well for me.
Is it normal to have a panic attack after brain flickers on/off and I forgot everything for what seemed like forever. Regained a little and immediately went into full blown panic attack. I thought I was dying., I didn’t know what was happening, I finally calmed down and started to get a little more in focus.
All this stuff is getting out of control.
@Iamwhoiamwhoami
Friend - a little message from me to you at site 3.
Today here is a lot of snow, 30cm. Why don't you and I go out in the snow, lie down, stretch our arms up and down to make 2 angels in the snow.
@Helgafy
Go enjoy yourself, I am also experiencing snow. This last storm dropped about 18 inches of heavy wet stuff here. I am not a snow person by any means. But definitely would be satisfied with you making snow angels or whatever else makes you feel good.
Thank you for your beautiful thoughts.
@Iamwhoiamwhoami
Maybe this is good for you to read: Psalms 121:1-4 NIV
I lift up my eyes to the mountains— where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.