Hello, everyone! Happy feast of the guardian angels. Long time no update, I know! But, I have a good explanation for it.
In a nutshell, I was hit by the most (physically) intense bout of summer SAD (seasonal affective disorder) this year. I was “out of it” until about a two weeks ago. I had insomnia from June 19th through early September. I was averaging half an hour to two hours max of sleep per night and then zonking out during the day. Some days I only slept a total of 3-4 hours because of how noisy apartment life can get. It’s only been the last 3 weeks or so that I’ve started sleeping a little better with the occasional off days. Since I was struggling with physical fatigue during the day for months, I was pretty much “dead” to the world. I wasn’t in touch with friends (not even my bestie got much out of me this summer) but I would update social media in order to not worry anyone by a complete radio silence. Some days I barely had energy to walk around the living room for a little exercise. I had zero desire for some of the basics of life, including showering (which I had to force myself to do during the peak of the summer SAD). It was… bad.
The only positives that came out of this SAD spell was that it’s now an established pattern for me… and I have a legit reason why it hit harder this year: I was (unofficially) diagnosed with POTS on the 15th anniversary of my father’s death in July. Unofficially because there is no test for it that my cardiologist could do for me but he agreed that I have all the symptoms his other “POTS girlies” have. I’ve always gotten sick during the summer (especially because heat makes me feel faint; thanks, POTS!) but it took until this year to notice a pattern of the depression I feel during these months. I thought it was related to my father’s death but it actually preceded it. So, now we know what I have to deal with from June through September, which is a plus! I can try to find ways to help it as I begin to understand it better. But, like I said, the POTS diagnosis definitely made things worse this summer on the emotional front. The positive I’m taking out of it is that I now know POTS is the reason for my near-fainting spells (and I literally ended up on the bathroom floor once this summer), palpitations, lightheadedness, etc that I’ve had for decades. So, yay for that but boo for how hard it hit me this year.
Anyway, that’s not why I’m writing. I decided to update because on this day, 4 years ago, I was given a second chance at life. I’ve already written about what happened on that day for Epic Pew but I realized that I’ve never given a good update to it. Since I no longer write for Epic Pew, I wanted to give a little update on how things have changed since I wrote that article in February 2021.
First: no more adrenal insufficiency. Next month will mark a year since I was weaned off of the medication for it. As of late May of this year, my little adrenal glands were still working as they should. I’m sure my doctors will want to re-test me in a couple of months but, for now, it looks like I’m back to normal on that front.
The biggest question I get is regarding my eyesight. Can I see yet? If I use Instagram, does that mean that I now see better? I just received the illustrated edition of The Hunger Games by Suzanne Collins, does this mean I can see? It’s a difficult question to answer but the clinical answer is: I’m still legally blind though I have some residual sight.
Can I see better than I did when I wrote that article? YES! In some ways, my eyesight has improved. I can now see a little more (and sharper!) through the “pinpoint”/tunnel vision I have in my left eye. It’s still not a whole lot and my peripheral vision is still uber blurry even with the aid of glasses and contacts (which I will get into in a bit). I still cannot see anything straight ahead in my right eyes and my peripheral vision is even worse in that eye. However, I started wearing glasses again and it’s helped with the residual sight in my left eye.
I found these reels on Instagram (and I kept the creators’ usernames on the videos to give them credit for them) which have been the best explanations of what I see out of my eyes. The conditions are not the same as mine (I have bilateral optic nerve atrophy) but they can show you (in visual form) what I can and cannot see out of my eyes.
The first video shows how differently I see out of both eyes. The first visual (for glaucoma) is close to what I see out of my left eye though that area is bigger than what I can personally see. The second (macular degeneration) is what I see out of my right eye.
This blind artist has a video that shows the visual snow I get in both eyes as well as how it looks out of my left eye with that little “pinpoint”/tunnel vision. This is the closest thing I’ve ever seen to show you exactly what it looks like for me what I look at things:
I bet you’re wondering about the glasses and contacts. I actually started wearing my old pair of glasses two years ago. Then last year I went back to my old optometrist (after the new insurance-issued ophthalmologist failed to properly test my residual eyesight) and they helped me find my new prescription. It took us 3 weeks (and I felt so bad that I kept going back because my case is so difficult) but we finally figured out what my eyes needed the most. My prescription is actually lower in my left eye than it was in past years but only in the small area I can still see out of. So, yes, glasses help that little bit out of which I can still see but the majority of my eyesight is still blurry. I still cannot walk without the aid of a white cane because my distance and depth perception is still pretty much non-existent. I couldn’t tell you how far away or how shallow or deep something like a stair or a sidewalk is, even with glasses on. I’m also not guaranteed to not get (literally) blinding flashing lights in my eyes when I’m out (without dark glasses on). Once I get them, it takes me a minimum of 20 minutes to be able to see anything even out of my left eye once again and I have to stay seated until that passes. (Side note: I actually got those flashing lights for a little bit while writing this post and had to take a little breather.)
And who inspired me to start wearing the glasses (and asking for contacts!)? None other than Paul (the blind illustrator) after seeing how much it helped him with the bit of residual sight he still has. Here’s the video that inspired me.
It’s so easy for people to say “if you can see a little bit, you’re not blind!” However, only 10% of all those who are legally blind are completely blind. The rest of us have some residual sight but either our eyesight isn’t better than 20/200 out of our better eye and/or our peripheral vision is completely useless as is my case for both eyes. This is one of those “not black and white” situations and some people don’t understand so they make generalizations and try to discredit people based on their ignorance.
And if you’re wondering: I can read things or see things as long as they fit in the little pinpoint of my eyesight. So, I’ll make the text as small as possible to read things with my left eye (like this):
And if I want to watch something, it has to be with the smallest screen possible or with the screen as far away as I can manage (while wearing glasses) to see more of it than I would if things were bigger. I do have to zoom in and get literally inches from the screen to see details (and they’ll still be blurry because I cannot use my glasses to see things up close). However, if I want to get more of a “general sense” of things or better see what a person’s face is like, glasses with a tiny and/or far away screen is best for me.
Still legally blind but I’ve learned to exist in this world with the visual impairment, which seemed almost impossible 4 years ago.
That is my long update for y’all. I will try to write more often now that I’m sleeping better and I’m feeling a little more awake and alert but no promises because life happens sometimes.
Please feel free to share this with anyone who might not understand what being legally blind might mean to some. Most people don’t understand the term and then go around accusing people of lying, something that almost every single visually impaired person I’ve met and have been acquainted with has said they’ve had to deal with. I also have highlights of IG stories I’ve posted on my account if you want to see more (including how I watch movies with audio description). You just have to let me know if you’re not following so I can add you if I’ve interacted with you online long enough since my account is private.
I hope you are all well! And a massive “shout out” to Bl. Carlo Acutis for his intercession all of those years ago!
As always, thanks for reading and God bless!
No comments:
Post a Comment