Chronic Illness Chronicles

Hey.. it’s been awhile.

It’s not that I haven’t wanted to write, I really have. Things have just been so crazy stressful it’s been really hard to sit with myself, my thoughts, my feelings, so I have been staying as busy as possible. But I am really working on getting back into healthy routines and taking the best care of myself. 

In the last few months so much has happened. Moms treatments began, work chaos, getting a new job, getting covid, and so much more. This blog post is going to mainly focus on how covid was for me. Stay tuned for my next post about my recent appointments and how those have been going. I have a huge update!

Let’s get into it. So I got Covid. Of course I got it when my mom had cancer. I mean come on why wouldn’t that happen. So I tested positive May 28th and the days prior I was pretty much fine besides my normal symptoms. That morning I woke up and felt like I had gotten run over by a truck. I isolated myself upstairs which was really hard being alone for so long but I had to keep my mom safe. Which didn’t last long because then she got covid. 

My covid symptoms were pretty intense, low oxygen, crazy high heart rate, feeling faint, intense bone and muscle pain, GI symptoms, migraines, and more. Basically it felt like a really bad flare. So I rested and hydrated and stayed in contact with my PCP and Neurologist and they adjusted my meds as needed. When my 5 day quarantine was up I was very much still sick. I did try to safely get out of the house for a little bit but it soon went very far downhill. The Sunday following my end of quarantine I ended up going to a hospital but then leaving because I got nervous..lol. My doctors wanted me to try paxlovid but it interfered with one of medications so I could not take that. My doctors also told me that if I was not triple vaxxed I most likely would have been hospitalized and on a vent. So as hard as this was on me and my body I am very lucky. 

The next day I called my PCP and she put me on a second round of steroids. At this point I had not slept much in days due to my symptoms and coughing all night long. And us with chronic illness know how important it is to sleep. So it is safe to assume I went into the worst flare I have had since I first got diagnosed . 

I ended up being out of work for 2 weeks. During the second week, and first obviously, I was so sick and unable to sit up for more than 1 minute. It was really hard to see, this is so hard to explain unless you experience it because it’s like my vision is fine but I just can’t see and I get really dizzy looking at anything or moving my eyes at all. I also regressed and became unable to drive and walk downstairs again which was really emotionally hard on me. I felt very faint, very weak, and all my regular symptoms were in overdrive. After a couple days I began trying to go for walks. It was extremely hard. My dad walked with me each day and we tried to do it for 30 minutes. I had to walk really slow and take breaks. My heart rate was above 155 each time we walked. But I did not want to give up and give in. Despite how awful I was feeling I knew that if I did not move my body this flare would be around for awhile. I also was so scared to regress even more. I have worked so hard to be where I am. I became very anxious and depressed during the covid/flare. There was so much going on and it was really hard to cope. Now I am about a month after I tested positive and I am still at the tail end of my flare or maybe it is just with it being summer now which usually causes an increase of symptoms. My ribs have hurt for a while which makes it hard to sleep and breathe because of the pain at points. And I still have a wheeze. Other than that it is just my regular symptoms. I am working hard though. 

Despite how taxing this time was on me there are parts that I am grateful for. I wrote a journal entry one night so I’ll share some of what I wrote here: “Secondly my flare. Wow. Was it really rough. It was challenging mentally and physically. Acknowledging how hard and serious it was is important. I am grateful though. For one I got a nice break from work and when I return I will only have 3 1⁄2 days left till summer. Two I had to rehab myself back up to being able to walk. When I first got really sick in 2020 I was very anxious, depressed, and scared. I was so focused on being “normal” and “getting my life back” that I did not always do what was best for my body. I rushed into the wrong types of exercise, wasn’t as strict about my meds(cromolyn) at times, I didn’t exercise for a long period of time, etc. I feel like this is a chance to heal in a better way. I have just been starting with just 30 min walks. This week I will walk and do PT like strength exercises, and go to the next step when my body feels ready. I am SO grateful for rest, a chance to do it in a better, more healthy way. I am SO grateful for my family/friends. The love and support offered all around is humbling.”

That journal entry was really important for me to write. When you are chronically ill it can be very easy to be swept up into depression and negativity. Thinking “why me” all the time. Now don’t get me wrong I 100000% have those days and there are points where I have more why me days than why not me days. But being able to have those why not me days and look at your experience with a different view can be very helpful to your healing process. During this time I found a girl on tiktok who had a similar experience to me with POTS and she worked so hard and is now lifting weights again. She inspired me. And that is such a beautiful thing about this community is that we are here to support, love, comfort, and inspire people to be the best they can be. That is my goal. 

I know covid seems so 2 years ago and everyone is sick of it but PLEASE continue to take it seriously. If not for yourself for the people around you and for the people who are medically compromised. Thank you.