I am pretty sure I have talked about it. Maybe not as much on here as on my other blog, but being unable to create stable, flowing memories has a curious effect on my ability to place things in time. I have a difficult time putting memories in order or even knowing if something was a few days, weeks, or months ago.
This is something that is lightly addressed by my doctors as I suspect there is very little they can do for me in that respect. I am not creating mile markers in time. I can still tell what time of year it is by the sun, but what does that even mean in the context of real life? I have to live by a schedule that I loved at some point but now I feel like it is a burden. What if my body does not FEEL like getting up and going to another appointment.
Doesn’t matter because I have to go anyway. I often am waiting 2-6 months for appointments, so when they come around, I go even if I feel like death is nigh. The rate of descent news from these visits is probably around 40% because most of my doctors are pointing their fingers at my brain and my neuros are scratching their heads because I am not a textbook case of someone who has chiari and a normal decompression, I had problems before I ever came in, I had already felt the boggy breath of the reaper as my brain exploded into my neck. Am I rambling? Sorry!
In the end the appointments are necessary to make sure that the doctors, my family, and I can be on the same page and collectively understand what our treatment options and expectations are. Not having a regular schedule beyond church and doctors and naps is probably detrimental to my health. We are working on it. It is a little harder now that I can’t drive. However, know that you are not the only person going through this. If you have ha a major trauma and you can’t get it together, THIS IS YOUR GRACELAND! I feel you. I too am tired. I too had med-head. I too need to take 2, sometimes 3 naps a day.
If you can’t figure out why it is so hard to get it together, I can be the first to introduce you to brain injury, Either by book or by force. No one, not even these prominent doctors can truly understand how the brain and mind function, however they seem to be able to spot when it is not functioning well. You may think many people fake their symptoms, but you’d be surprised at the number of improperly treated brain injuries. (This can either be from patient refusal or from under trained doctor who cannot spot the signs of abnormal cognitive behaviour and speech and they just give them a mental health stamp and never look at the brain as the cause).
That’s not true! You yell at me!? I kept going back to the doctor for 8 months telling them something was wrong, and they told me I was depressed and sent me to a psychologist. I went to that psychologist for SIX WEEKS trying to figure out the root of my hypochondria before I was told my cerebellar tonsils had herniated out of my head and into my neck and I needed immediate surgery based on my symptoms,,,you know, the ones the other doctors told me were in my head. Technically they were, just they were now starting to fall out!
Especially in out intelligence we must consider how to humbly deal with the unknown. The last three years of my life have remained largely unknown to me. My doctor says that it won’t come back. It is lost forever. The people I have met, the things I have done, washed away as I open my eyes from sleep. waking up every day, checking my phone to see the day and month. My life is like a mouse treadmill right now. It isn’t really going anywhere and the scenery doesn’t change. I hope that this part of my life gets more interesting, sooner.