My Life with Long-haul..... Yesterday

A break in the chronological story to talk about how I felt yesterday

TW: depression, death, suicidal thoughts, not a “feel good” piece

I wrote this last night, but didn’t post it right away. I wanted to sit on it and decide if I should share it or not. Writing it was so emotional and stressful that it sent me into a massive migraine and really turbulent on and off sleep.

I hesitate to share it for many reasons. One of the reasons is - I work so hard to have good mental health, and to try to be a source of light and healing for others on that journey. I don’t want people to think I am a fraud when I post and share my wellness content if they know that sometimes I feel like this.

But, in thinking about it, I think sharing this shows how much I am not a fraud. I also have always promised to be authentic and keep things real. I say this all the time: HEALING ISN’T LINEAR. People who do the work on themselves don’t just have progressively better and better days for the rest of their life. There are peaks and valleys. Yesterday, was a BAD day. Today, isn’t great, but better than yesterday. Tomorrow, we will see. Overall, I think I manage my mental health really well, all things considered. But yesterday, yesterday was hard…

Yesterday

Last week my post was about my long-haul Covid story. So, this week, I wanted to write about something different. Something fun and lighthearted and not so heavy and depressing. However, late last night I read a very legit article, from a legit source, with a very legit long-haul doctor. The gist was that after 3 years of studying this illness, research is mostly showing that if you’ve had more than one Covid infection, and you have long-haul, the likelihood of ever making a recovery is almost none.

Until reading that, I was being really optimistic and holding out a lot of hope. Now, I am feeling really crushed and inconsolable. I know research can change, I know a cure could be coming, and I know that isn’t the end all be all. But I also know that I need to better manage my expectations and plans for the future. I need to be willing to accept that I may actually never get better.

In my mind, it was a foregone conclusion that someday I would get better. Now, I just don’t know. I might never be able to move to NYC. I might never be able to work a normal, full-time job again. And I may never have a full recovery from these symptoms. I might. But I also might not. And that has kind of sent me over the edge.

Guys, I am not ok. I am trying so hard EVERY day to do all the things I can do to feel better. To heal. To recover. To get on with my fucking life. But what if this IS my life now?

I have so much anger and resentment in my heart. I am so mad at the doctors who have dismissed me, the “friends” who abandoned me, and the people who wouldn’t take Covid seriously.

I’m harboring resentment for the person who gave me Covid a second time when I was finally getting better from my long-haul, and now that I have had Covid twice with long-haul, research is showing that the likelihood of me ever recovering from long-haul is quite low. I am mad at the fact that the person who gave me Covid a second time was a Covid denier. She was training me for a job I was forced to take that I didn’t want to take. I am mad that this job I didn’t want to take was supposed to be remote but I literally just had to go in for ONE day of in-person training and on that ONE day I got it from literally the only other person there besides me and the owner.

I am angry at people who have acted like this illness isn’t real or that I am faking it, and they are abandoning me in my time of need. I am mad at Social Security for denying me for disability benefits. I am mad that I had to cash in my entire retirement at 40 years old to pay my bills because I got denied for disability and I have no way of being a reliable worker and holding down a job right now.

I am angry at Dr. Lehman for telling me that he doesn’t believe that long-haul Covid is real, and for being dismissive and interrupting me the entire appointment and then tried to blame my cat that I have had for 16 years for ALL OF MY SYMPTOMS. Which to date, all of my symptoms are the following: Chronic Fatigue syndrome, insomnia, migraines, dizziness, brain fog, memory loss, heart palpitations, shortness of breath, digestive issues, involuntary limb jerks, and high blood pressure. None of which were present before I had Covid in Feb. 2020.

I am mad at my old primary, Dr. Workman, for doing nothing to help me, and wanting absolutely nothing to do with learning anything new or being proactive at all. To the point that I was denied for disability in large part due to him not doing any of the relevant medical tests or making any of the proper medical notes to help me get the help I so desperately need.

I am angry at Dr. Stress for telling me that I didn’t have long-haul when we literally knew almost nothing about it in 2021. She told me that I just have anxiety and a low IQ. (These statements will be more fully fleshed out in the future chronological installments of this story, so stay tuned for full details).

I am angry at people who keep trying to cross my boundaries and are forcing me to expend energy on things that should not be my priority right now. Even when I set the boundary, ignore them, try to cut them off, try not to put any energy into them - they still find ways to make everything about them. I am angry at people who keep bugging me about stupid shit when I don’t even have enough energy to take care of my shit.

I AM ANGRY AT SO MANY THINGS AND SO MANY PEOPLE AND I CAN’T SEEM TO LET IT GO.

I have tried so hard to be positive, so hard to follow all the advice on how to get better, and have gone to SO many medical appointments. I am doing everything I possibly can for my mental health, and I AM DOING ALL THE FREAKING STUFF. But I am so angry and frustrated and resentful. I am so hurt and disappointed. I am so lost and so depressed.

I am 40 years old. I thought I would have more time to go and live a life. Now I wonder if being unemployable, with no money, unable to travel, unable to “work” on anything more than an hour or two max a day, unable to live independently, living in my brother’s old bedroom in my childhood home with my parents in a hometown I never wanted to come back to, feeling like shit 75% of the time is the life I need to accept?

At what point is all the positive thinking I have been doing going to prohibit me from being willing to accept that it may not get better than this? Is this a life worth living? Guys, I really struggle to say this, but I have to tell my truth. Where I am at today - I am feeling I would be better off dead. I am not going to kill myself - but mostly because it would make other people too sad. However, the way I feel right now, in this moment, is I wish I could just die instead of living the rest of my life this way.

In a few days I will probably feel better. I will probably come back around to being positive again and working towards a better future. I will probably feel like there could still be the possibility of a cure. I will feel like I can fight the odds of this new research. I will have hope that further research could prove this current research wrong. I usually pull myself back up. But today, I wish I was dead.

I know that can be extremely hard to read and hard to hear, for a variety of reasons. But, it is harder for me to say and to feel. And I promised you guys my full, authentic, uncensored truth. No matter how uncomfortable or unpleasant it is, this is my truth today. It may not be my truth tomorrow. But it is my truth today. This is what living with a chronic illness that has no cure can feel like some days. And people need to understand that.

There are no comforting words right now. There is only the truth. I am unhinged. I am grieving. I am doing everything I know how to do, and nothing is working - so I am frustrated as all fucking get out.

All I can do is surrender. I surrender to whatever is meant to be. And I ask the divine powers that are looking after me, please help me surrender and accept whatever is meant to be. Cause right now, I feel inconsolable and hopeless.

Well, there you have it. I am really scared to post this. I am scared it will scare people off. I am worried it will make people think I am not capable of being the wellness writer and content creator I am trying to be. However, I know I need to tell the truth. I think other people feel these types of ways more often than they talk about, because they are scared. And if you can see someone who struggles, but also always pulls herself up and keeps fighting another day, then hopefully you don’t feel alone. I hope I help you feel less alone. I hope I haven’t scared you off. I promise next week I will write about something fun!

Lots of love,
Krista