My Life with Long-haul - Part 3
Link to previous post in this series - Part 2
Ok, so we previously left off around Fall 2020, when I found out that I was just outside of the window of the anti-body test telling me if I had ever had Covid. As such, I would never have a way of truly knowing.
Fall and Winter 2020, I didn’t see many positive changes in my symptoms. I continued having almost daily headaches. Small tasks continued to fatigue me and make me short of breath. I also noticed that I would have a little extra energy one day, and so I would take advantage of it and get some chores done. Then, the next day, I would be bedridden all day (I later learned this is ‘delayed fatigue’ and very common for people with long-haul. You have to learn to pace yourself, cause if you overdo it when you are feeling OK, you will pay for it the next day.) I needed naps almost every day. Brain fog had taken over and I felt like I had ADD and dementia all rolled into one. And I was experiencing regular lightheadedness.
Around this time, insomnia and heart palpitations were starting to kick in, too. Listen, I have always been a “night owl”. My preferred sleep schedule is 2am-10am. In fact, when I was a toddler, I used to keep my mom up til 2am every night wanting to play, and then would sleep in til 10am. That has never changed. School and work were always a pain in my ass. Getting up that early straight up sucked. I always was running late in the morning. But, for the most part, I would adjust my sleep schedule to try to fall asleep earlier and wake up earlier. As a working adult, I probably would fall asleep around midnight most work nights, and then wake up around 7:30/8ish on work days. On weekends, I could easily stay up til 2 or 3 and sleep in until 11ish.
However, this was different. This wasn’t a delayed sleep schedule. This was like no matter what I did, or how tired I was, I was up later and later every night. On work nights, I was having trouble falling asleep before 4am. This made an 8-9am wake-up quite nearly impossible. And this was only making all of my other symptoms worse. It wasn’t a matter of not being tired or having a busy mind. Quite the opposite. Every ounce of my body wanted to be asleep and felt like I should have no trouble falling asleep. However, it just was becoming harder and harder.
All of this continued through to Spring 2021. I was working remotely, sleeping right until 9am and then logging on to work from bed, working in bed all day, and barely going anywhere. My groceries were being delivered, my laundry was being sent out, and I was behind on keeping my house clean. I was trying to take 30 min walks about 4 days a week. I was entertaining myself with some easier hobbies like making up fun new cocktail recipes and displaying them on social media, collecting records to lie around and listen to, buying unusual outfits online and posting pictures of them on Facebook, and coloring in my coloring books.
To the outside world, I seemed fine. Because they couldn’t see me. We were still mostly staying at home. Occasionally, I went to a friends house or they came to mine for a few hours at a time. And I would use all my energy to be lively during those visits. Then I would crash when it was done.
I was posting all my fun visits and hobbies, and not really telling very many people how I was actually feeling. I am not entirely sure why. I am usually a pretty open person. However, I guess I was still in some denial about all of this. I didn’t have any concrete answers, and since we were all cooped up at home it was easy to get a lot of rest and not have it impact anything. So, I thought, “why complain?” Additionally, like I said, when I did tell people, I was often met with “everyone is going through a hard time with quarantine and a pandemic.”
However, like I mentioned in a previous post, there were a handful of people who didn’t dismiss me, and were sympathetic to what I was going through. My therapist was definitely one of them. A couple of others were my bosses at the time. I had been confiding in my 2 bosses and they had been so understanding, patient, and accommodating. It was the perfect scenario. I was struggling, and they worked with me and my limitations. They were kind and supportive.
In Spring 2021, we were gearing up to go back to the office, and both of my bosses were gearing up for maternity leave. All employees were told that we were going to start coming back to the office 2 days a week, and WFH 3 days a week. Additionally, I was going to be covering a significant portion of work for one of my bosses who was out on maternity leave. The other boss had someone covering her leave, but I was assisting that person and helping them get up to speed and I was having to add a lot to my plate in order to be able to assist them.
Work was picking up. I was no longer going to be able to work in my bed every day. I was no longer going to be moving at a regular work pace. Things were getting ready to speed back up to the turbo speed that we normally operated under pre-pandemic, and my turbo speed was going to be extra turbo because I was picking up extra work to cover the maternity leaves.
Under normal circumstances, I would have been able to do it. Yet, under my current circumstances, I wasn’t. However, at the time, I didn’t know that/wasn’t willing to accept that. I was getting ready to bite off way more than I could chew.
Not only was work amping up to warp speed and a ton of weight, but I decided I needed to start getting out and doing stuff again. It was time to travel, go out with friends, and go back to my old life as much as possible. I was not interested in being held back by my physical limitations. I was going to push through. I planned to kill it at work and take on all kinds of projects, I was going to go to the office twice a week and be a big ball of energy for all of my co-workers, I definitely wanted to make sure to go out to some happy hours after work, of course weekends would be spent with friends again, and I decided I needed a week-long trip to San Diego to visit my bestie.
San Diego came about because I had some Southwest money that was ready to expire from one of my pandemic trips that had to be cancelled. I didn’t want to lose the money, so I booked a trip to see her in June, right before I would lose the money. This was about a month after I started going back to the office, 2 months after I had started covering one of the maternity leaves, and if memory serves me (I may be wrong about this), right around the time my other boss started her leave. So, you know, it was the best timing ever for me to be doing this. Why am I such an idiot?
The trip went fine. It wore me out, but it was fine. I came back to work and was completely in over my head from missing a week and all of the projects that were ramping up. I began really losing traction after this. I just couldn’t ever get caught up. My energy and brain fog wouldn’t allow it. I was falling so behind, making so many mistakes, and just crashing and burning.
I was working on some projects with some people that hadn’t worked with me before, and I could tell that they thought I was slow and not very good at my job. I could sense their impatience with me. They didn’t have a frame of reference for how I normally operated, and I wasn’t about to tell them what was going on with me. I just tried that much harder to be better, like I used to be.
As someone who is very action-oriented, self-sufficient, and stubborn as fuck - I was just not accepting any of this. I kept forcing myself to do all of these things. I kept insisting that I needed to make it all work. And I was unwilling to admit that I had a serious problem. I would use every ounce of energy I had to put on a brave and energetic face when I was around people. And all the times I wasn’t around people, I was in bed and unable to do shit.
By mid-summer 2021, I started talking about this more with my therapist, parents, a few close friends, and my temporary supervisors. Everyone agreed it was time to go to the doctor and see what could be done. There was one problem. I didn’t have a good primary doctor. The primary that I loved had moved away, and the new guy I had sucked. I didn’t want to see him for this, or anything. As such, I set about trying to find a new doctor. Much easier said than done.
Almost no doctors knew anything about long-haul Covid and didn’t want to take me on. And the very few doctors I could find that claimed to work with long-haul weren’t taking on new patients. They were inundated already. By the time I got to the last name on my already measly list, I was desperate. Again, I was told they weren’t taking anyone new on, but I begged and pleaded and came across so lost and pathetic that they agreed to see me. However, I had to wait until mid-September (about 2 months) for my first appointment. I agreed, and I just pushed through in the meantime.
In the time between me calling the new doctor and the first appointment with them, one of my bosses on maternity leave (the one who was my most senior boss), put in her notice because she had found another job. I was so happy for her, but so incredibly heartbroken. She had been my port in the storm for the past 2 years, and I knew I would be lost without her. I also knew how supportive and accommodating she had been with my medical issues. Who would replace her? Would they be as understanding and patient?
At this point, I decided I needed to speak to HR about my condition. It wasn’t improving, in fact, quite the opposite. It was impacting my work more and more each day. And, depending on who came on board for my previous boss, they may not be as supportive of what I was dealing with. I decided I needed to get something on the record for my own security. Boy am I glad I did, because even my worst fears weren’t as bad as what was in store for me in the next month.