By Ulrika Sundin
My name is Ulrika. I am 41 years old and I live in Uppsala, Sweden with my husband and our four boys. I got transverse myelitis (TM) as a 12-year-old in 1991 at the L4-L5 level. I was recovering from a respiratory tract infection when I suddenly got a sharp pain in my back, and over the next few hours I went from healthy to completely paralyzed below my waist. I recovered fairly well over the next few months but was left with paralysis in the backside of my right leg, pelvic floor dysfunction and a neurogenic bladder. A few years later I also developed nerve pain, and eventually severe IBS in combination with my pelvic floor dysfunction led to my having colostomy surgery as a 29-year-old. We then had our four boys and over the years, the nerve pain and bladder issues became so severe that they limited me very much in terms of activities and being out and about in general. So, I contacted a urologist and tried medication and Botox treatment but eventually opted to have a urostomy surgery. I also went back to work as a PhD student in August of 2019 after more than nine years as a stay-at-home mom and several years on part time medical leave working from home before that. I spent the fall of 2019 working on my licentiate (halfway to PhD) thesis and pushing to get my surgery done before I would switch from employment as a PhD student to being on scholarship. I finished my thesis in mid-December and had my urostomy surgery the day after.
We, of course, had high expectations for the year 2020. I was going to get my licentiate degree and continue on towards my PhD. Since I was no longer limited by bladder issues, we also planned on doing a lot of fun things to compensate for everything we had missed out on in the past. And things started out great. We went to the movies with the kids, and my husband, a friend of mine, and I went to a concert in February where I got to see one of my favorite performers that I have listened to a lot since I was 20. A few weeks earlier though, the first COVID-19 cases had been confirmed in Sweden, and a few weeks after we went to the concert, all these kinds of big events were shut down. The universities across Europe started shutting down and changing to distance education, so when it was time for my licentiate defense, I was one of the first at our university to do my defense virtually. There was a lot of stress involved in that, of course, since it was unclear if we would be able to pull it off pretty much until it was done, since there could be no interruptions or difficulties with the connection or sound, etc. But I made it through, and I was so happy! However, directly after the defense, I had to pack up my stuff and go home to work from home again. It was so strange since I had spent so many years at home and had really loved getting to literally go to work again. There were so many mixed feelings, being happy I had finished my licentiate degree and at the same time being upset about the whole COVID-19 situation and the uncertainty of things. And there was of course also the disappointment of realizing that all those things we had planned on doing would not happen – at least not for the foreseeable future.
I spent the rest of the spring and early summer adjusting to the situation and battling respiratory tract problems and a bunch of other symptoms, and at one point, COVID-19 was suspected as a possible cause. This was when the testing capacity was so low in Sweden that only those who needed hospital care were tested due to lack of testing supplies. For those with milder symptoms, there was a lot of guess work happening. In the end, I was diagnosed with some kind of hypersensitivity mimicking asthma from several infections and stress the previous months. By then, I had spent some time in a Facebook support group for people with confirmed or suspected COVID-19 and I had learnt a lot more about this condition. Before I was mostly worried about my mom who is 80+ years old and lives on her own. But I got a bit more scared when I saw how many previously healthy younger people got really debilitating symptoms that seemed to last for months. In terms of my TM, I was not that concerned as it has not caused any breathing problems. But, of course, I was still a bit apprehensive since this was a new virus to which I did not know how my immune system would respond.
During the summer, the situation calmed down a bit with very few cases in Sweden, and so we could see my mom a few times and I also saw one of my sisters. Other than that, my social life was limited to meeting a friend out in the park for lunch in private a few times, and of course spending time with my husband and kids. We went to the beach for a few hours a couple of times, but other than that, we stayed home or went for walks or simple things like that.
Photographer: Angelica Klang
Towards the end of my summer vacation, everything I had gone through the previous year caught up with me – going back to work, writing my thesis, having surgery, defending my thesis, the whole COVID-19 situation, the lack of social contacts and the general disappointment of what this year turned out to be. It was hard and I struggled a bit mentally the next few months, especially since the case count started increasing dramatically again in mid fall. At the same time, the pandemic had become a new normal, and so in some ways, I was less stressed about it than I had been in the spring.
Later in the fall, cases started popping up closer to us, at one of our boys’ school and at preschool, and it started to feel like it was getting harder to dodge this infection. And sure enough, late in November, my husband started having cold symptoms. He mainly had a dry cough, sneezed and had a bit of a congested nose, but other than that he felt fine. He was able to work from home and take support calls as usual. As the symptoms were milder for him than with regular colds and since he was busy with work and recovered within a few days, he did not get around to getting tested initially. But the week after, I woke up with a congested feeling in the left side of my nose. The rest of the day I felt fine. The next day, however, I lost my sense of smell almost completely. I first noted that my lunch did not taste very much and so an alarm bell went off in my head, and I started smelling things around our house. And sure enough, I could smell almost nothing no matter how desperately I tried. This was not from a congested nose as with normal colds. I could breathe completely freely through my nose. The only things I found that I could smell vaguely were my tooth paste and my nail polish (if I put my nose almost into the bottle). So naturally, I got tested the next day, and the test came back positive. Our 10-year-old developed cold symptoms and a slight fever the same day I got tested, and his test also came back positive. He recovered within a few days. As part of the tracing process, my husband got tested too, and his test was also positive. The rest of the kids were too young to get tested. Our 8-year-old did not develop any symptoms, our 6-year-old got a congested nose, and our 4-year-old had a runny nose, maybe a slight fever and an earache that quickly resolved.
As for me, the worst thing with COVID-19 was the mental part. I am prone to anxiety, so I was a bit on edge the first week waiting to see if I would get any scary symptoms, like breathing difficulties or any weird immune system reactions. But nothing bad happened. My sense of smell started improving within a few days and other than that, I felt absolutely fine the first five days. Then I got extremely tired for about three days and mostly wanted to take a nap, but I tried to stay up as much as possible anyway. After that, I had a couple of days when I was fine during the day but the sleepiness hit me really hard in the early evening. Other than that my rectum (which has been disconnected since my colostomy surgery) got a little crazy a couple of days early after the onset which meant I had to run to the bathroom pretty frequently to empty it. But I did not have any dramatic effects on the rest of my digestive system. It was a bit upset maybe but nothing extreme. The only odd symptom I had was a strange sensation one evening as I was washing my hands. As I felt the hot water run over my hands all of a sudden it felt like hot water was running over my pelvis too. But this sensation only lasted a few seconds. Since my TM started with mixed up nerve signals, I got a bit concerned though and called the medical advice line and they told me to contact my GP if this sensation came back. Thankfully, it never did though. My already hypersensitive respiratory tract acted up a bit, but that started before the COVID infection, so I am not sure what effect the infection had. My GP has recommended that I have a check-up to see if I have developed mild asthma. So, in the end, for us, COVID-19 was not very dramatic. Mentally it was good for me that my husband got it first and had already recovered when we found out it was COVID-19 as he belongs to a risk group, and I think I would have worried a lot more about him if I had known what it was early on.
Now that we have had COVID-19, so far without complications, I am less scared of it on a personal level. But since more and more people close to us have also had it in these recent weeks, it has become clear to me just how hard it is to avoid it now, even if you try to be really careful. This makes me worry more about my mom being able to stay safe until she is offered a vaccine. I also know that the infection itself does not lead to long-term immunity, and as far as I know, there is no absolute guarantee that you will get through it as easily in the future just because you have had it once without complications. Plus, vaccinations might be required anyway to be allowed to participate in certain types of events, at least for the foreseeable future when our societies gradually open up again. So, I really want to get vaccinated. But I do hope that those of us who have had severe autoimmune reactions to viruses or vaccines in the past will be offered a choice in which vaccine to be given. If the different vaccines turn out to have different side effect profiles, and, in particular, if one or more vaccines seem to have an increased risk of triggering reactions like TM, it would of course be wise to choose one that is as safe as possible. I am pro vaccines in general, but as a precaution, my neurologist recommended that I did not take my remaining vaccines in the childhood vaccination program after I had TM. However, I have never had a bad reaction to a vaccine, and I even took the Pandemrix vaccine in 2009 without any problems. So I hope I will get through the COVID-19 vaccination too without any issues, but I also hope I will not have to choose between not getting vaccinated and getting a vaccine I feel hesitant about. It is my hope for 2021 that as many people as possible get vaccinated to gradually put an end to this pandemic and to allow us all to see and hug our loved ones and to participate in all the activities that we love and that make us feel fully alive.