September 19, 2022

“Is there another life? Shall I awake and find all this a dream? There must be, we cannot be created for this sort of suffering.” – John Keats

I don’t know where to begin anymore. I don’t know. I never thought I would know so little and feel so engulfed by my life, by my own existence.

I would love to tell you that the reason I haven’t posted on here is because I miraculously recovered, or a cure was finally found, and that I’ve been living my life and soaking up every minute that I’d be given the opportunity to cherish again. But just the opposite has happened. I’ve grown weaker and sicker and jaded. This past year has been the most difficult year of my life by far. And I’ve had quite a few of those.

My body is fragile now. It has been for quite some time. I never used to think of myself as fragile. You always think you’re going to be the exception. And I’ve been sick for so long that I should know no one’s the exception.

The longer I’m ill, the more hope I lose. The longer I’m ill, the more I think, “what happened? How did it go this far? This isn’t right. This isn’t acceptable and this isn’t fair and when is my turn to have a chance?” And there’s nothing you can do truly about it. You can do everything else right – attend follow up appointments with your doctors, take your pills, go through testing, gain hope, try the treatments, lose hope, suffer, decline, rinse, repeat. And nothing ever happens. Nothing ever changes. Not for the better, at least. And it’ll make you a little bitter.

This last year has put my body through the wringer.

I never recovered from my vaccine injury that I had mid-2021.

In January, I had excision surgery to remove stage III endometriosis. My ME/CFS became even more severe after my surgery due to the strain it put on my body. (This kind of gave me one step forward, two steps back, kind of vibe).

In February, I tuned 23. There were a lot of complicated feelings I had about turning 23. I don’t know if they passed or if I just got used to them.

In June, I was diagnosed with Occult Tethered Cord, and was also diagnosed with Craniocervical Instability. I was recommended for neurosurgery.

Four days later, I tested positive for Covid. I was put on Paxlovid. Then I had Paxlovid rebound. It was the worst month of my life. And I still haven’t fully recovered.

This last month, I’ve been so fatigued that I couldn’t tolerate anything that was even mildly mentally stimulating – I couldn’t tolerate any social media, couldn’t respond to any texts, and at times, I didn’t even have enough strength to hold my phone to check the time. The last few days have been a little easier, but this illness is consistently cruel.

The last year has been… difficult, to say the least, and I struggle to put into words what I’ve gone through. I think, perhaps, there are things that can’t be explained, or described, or communicated – only experienced and felt, and understood only by those who have gone through the same. And those things create these little isolation units between you and everyone else. I came across a quote while I was online the other day that I think really describes this feeling well. It’s by Franz Kafka and he wrote, “I am constantly trying to communicate something incommunicable, to explain something inexplicable, to tell about something I only feel in my bones and which can only be experienced in those bones.” I think that sums it up beautifully. But it has been quite a year. I’d like to write and post more, if it’s within my capacity. I just hope things change. I know medicine is rapidly evolving and constantly changing. But change can’t come fast enough when you’re living a “life” like this.