We are nearing the end of July 2021, and for me I am finding it no less different than July 2020. Why? You may ask? The media coverage of Covid-19, it has swung back to things that are giving me pause. Last year, I was dreading returning to work at the end of June beginning of July as the mask protocols that were in place were making things difficult for me. I understood the reasoning behind it, but my body was not adjusting, and this was just wearing the mask for maybe 20 minutes at a time while going in and out of stores searching for necessities. I couldn’t imagine what 8 hours of continuous wear was going to do to me. Add to it all, I had an “almost miracle” that I wouldn’t learn was truly an almost until several months later of 2020. What I did know, was that I was constantly tired, more than my normal “Lupus tired” and nothing seemed to make it go away. Yet, from July 2020 until May 2021, aside from some vacation time taken, I worked my regular 40-hour work week each and every month.
It wasn’t without its own stressors, as we didn’t know when we’d have an exposure or if our cleaning protocols would really do enough to combat the virus that everyone worried about day in and day out. Then, the inevitable happened in December, I take my pre-Christmas vacation, and I find out that there were positive cases in almost every single room at my center. I panicked. Was I also exposed? After a lot of back and forth between co-workers, my director and my doctors (all of them- I was seriously spiraling) I am able to relax, I wasn’t exposed. By this point, I have learned that my “almost miracle” in the summer had left me with a little surprise that took several appointments to get resolved. It is still a part of me, as well, current issues are keeping me from getting it removed, but I am at peace with this. I feel that I have enough going on with my chronic conditions at this time to also worry about getting something surgically removed that may have no future bearing on me whatsoever.
I wish I had known when returning to the classroom last June/July that I would be sitting here facing the things I’ve been facing. I took a leave of absence beginning in May of this year as I was realizing that my chronic conditions were ramping up and the fatigue, the overwhelming fatigue they were creating had become noticeable at work. As in, got spoken to by my director and written up even after disclosing that it was my health causing the lack of energy and something that wasn’t in my control without having exact path of which one was in play. Real nice, huh? Add to this, my husband was still trying to get an injured knee fixed (since September) and was not working as a result of this fact. So, let’s bring that into the picture and have your director essentially threaten your job if you couldn’t “step it up.” Stress added, times a billion at this point. I resolved at that point to push my medical team to get things figured out and assist me in “documenting” my conditions enough to keep me from losing my job. In the meantime, I was still exhausted beyond anything imaginable. If I didn’t have something social planned or errands to run in my “down time” I was napping but not feeling rested by any shape of the imagination.
Everything came to a head in April of this year, when after seeing the results of a CT-scan done of my lungs showed an “incidental finding” that had been discovered initially in 2009, I decided that enough was enough and that I needed to take a step back from my position and take some significant time for me. The scan showed a cyst on my pancreas. That was it for me, I couldn’t deal with all the things my body was doing and continue the schedule I was keeping at work. I sought out my human resources director and requested information on taking a medical leave of absence. Which, thanks to the new law here in Massachusetts, would be a paid leave for me. After some deep soul searching, I decided on beginning my leave in the second week of May. I worked quickly to get a letter from my pulmonary specialist to support this decision, and then began to stress over how and when to tell my director. Suddenly, it seemed like she was never available. Meanwhile, I had several coworkers that were aware of what I was doing, and an innocent comment would lead to a discussion with my director.
It wasn’t the easiest of discussions, I mean how do you tell your boss that your job is causing your chronic conditions to spiral out of control and that the only way you know how to stop the spiral is to take the one variable out that you could control- your job- without having her freak out? The reality, you don’t. My director wasn’t happy, felt that I shouldn’t be doing this as she didn’t think it would make any difference. “What won’t you be doing at home that you can’t do here?” That hurt.
So, what have I done that I couldn’t do at work here at home since beginning my leave? I have listened to my body! Instead of being on the go constantly, I would pace myself and if I needed to take a nap- which I did do nearly every single day, sleep that is. During that first month of my leave, if my body told me to take a nap, I gave in. I could be watching a movie or show with my husband in our room, and I would just drift off to sleep. I’d get up, have dinner and afterwards, I’d be falling asleep watching whatever show was on for the evening. Then, I had my follow-up appointment with my pulmonologist where he ended up ordering supplemental oxygen for me.
I began this therapy in early June. As we near the end of this month I can tell you the only thing it has done besides make my breathing slightly easier- I wasn’t getting as short of breath during the day as I had prior to beginning this process- was the daytime napping disappeared. This isn’t to say that I don’t still get tired, but now, I could just relax if the fatigue hit, do some reading or poke around online potentially instead of sleeping the afternoon away. That was until the last couple of days.
I stated at the start of this that I feel like I am back at the beginning of the worries and such of the way this pandemic has hit me on a personal level. I meant it, I did what was asked- no demanded of me really, as there was no question about getting the vaccine as far as my doctors were concerned- and was fully vaccinated by the end of March. So, when, in addition to being on the oxygen (which I knew would exempt me from the mask anyway) that we would eventually be granted the ability to go without the mask in public made me happy. Finally, I could find some relief to my most hated stress. The thing that I feel more than likely made my current situation come into play much earlier than it would have otherwise. And yet, we are set to go back to having to wear the masks.
I will state again and again, I understand and accept the concept of why we are being asked to wear them. My issue, my biggest, toughest issue with this though? Is how some people are not looking at the bigger picture for some of us out there. We have done the work, gotten vaccinated, and some of us also have chronic conditions that have gotten worse as a result of the protocols. Have had to make changes to their daily lives in order to just do simple tasks like laundry. I never thought I’d be that person. Having to use an inhaler, and using oxygen at night to sleep along with using it whenever I need to walk up and down our stairs here with anything heavier than 20 lousy pounds. Is it any wonder that I am freaking out just a bit? I can’t see myself wearing those masks 8 hours a day, 5 days a week again. I have experienced ignorance on the use of supplemental oxygen vs mask use in the last month. In a hospital no less. I had a security guard yell at me even as I put the stupid mask- that I was NOT supposed to be wearing over my oxygen tubing- on while telling him it was wrong for him to be doing what he was doing. It is that experience that tells me that there isn’t any way that people will really care if you have a reason not to wear the mask or a reason to wear it, people are going to find a way to make you feel awful about your choices either way.
Which, is our new normal after all. Get vaccinated, don’t get vaccinated. Wear the mask, or don’t wear the mask. Vote or don’t vote. These are all choices we have made in the course of our lives. The issue now though, is that everyone feels compelled to dissect everyone’s choices and if they don’t align with their ideology then fights ensue. Big fights and I am sick and tired of it all. I just want to be able to get back to living my life, in whatever normal it is destined to become. Everyone do what works for them, I’ll do what works for me. Just please, don’t assume that I’ve made my decisions lightly or that I want the life I have now to be my normal. I loved my job. I loved going in and seeing my coworkers and the children every day and delighted in the progress the children made under my care. I bonded with many of them. And now, as a result of the pandemic, I am facing that chapter ending. Or at the very least my role getting edited. Time will tell.
To be continued…
Journey of The Butterfly 