The collector of chronic illnesses
My name is JC, and I live in Oslo, Norway. This is my story about living with multiple chronic illnesses (I’ve joked with my friends that I’m a collector of chronic illnesses. Dark humour is my coping mechanism).
I was born premature and spent my first months of life being stubborn in an incubator - pulling on my nasal feeding tube, turning around and scooping myself down into a corner in the incubator. My stubbornness was already showing then. I was one of the smallest but also healthiest babies that were born in the NICU at that time, with 930g as my weight and 34 cm in length. My childhood was fairly normal until I got diagnosed with asthma and allergies at the age of 5. When I grew up, my asthma was unpredictable, and I often went in and out of hospitals after having asthma attacks often linked to respiratory illnesses like the flu.
I even got to fly the air ambulance chopper after an allergic reaction, but I don't remember much of that incident today. When I reached my teens, these diagnoses got under control with multiple asthma and allergy medications. However, when I was doing my master's degree in special education in 2013, everything changed. I was diagnosed with chronic urticaria (hives) and atopical eczema at age 26 during that time. In addition to this, my allergies went completely highwire, and EpiPens (adrenaline auto-injector), ambulances and ER (Emergency Room) were a frequent part of my life. The nurses and doctors at the ER knew me on a first-name basis after a while, and I got admitted in 2014 to hospital after having allergies and anaphylaxis 6 days in a row in the evening and nighttime. I was admitted for over a month, and the search for a cause started. My symptoms changed and weren't following my normal anaphylaxis pattern. I was now switching between a red burning rash on my neck and face that was hot to the touch, itchy skin, hives, headaches, itchy throat, a barking cough, headache, dizziness, nausea, hoarse voice, paleness, swelling around my eyes, vomiting, a sense of doom, itchy hands, confusion, wheezing and fatigue/drowsiness. Some were repeating, like a rash, cough, hoarseness and itchy throat. The rest switched, making it harder for me to know what was going on since there was no pattern or obvious triggers.
Many years, medical appointments, seven hospitals and two countries later, it’s still somewhat of an unsolved mystery. Still, some doctors suspect that I have Mast Cell Activation Syndrome (MCAS), and I’m now on different treatments for that. Unfortunately, the blood tests and urine tests came back negative for MCAS, and no doctor has wanted to do a bone marrow test on me, which is where the mast cells are produced. But my treatment is very similar to idiopathic anaphylaxis, so some doctors claim that’s the cause, while others say it’s MCAS. I have also met doctors who blamed it all on anxiety even though I’m not diagnosed with this, and my anxiety score on tests suggests I don’t have this.
One of my allergists and internal medicine doctors called me his most difficult patient to treat in his history as a doctor, not the compliment I was looking for, but I happily took it! He was, oddly enough, one of the doctors who had helped me the most and had been very caring towards me when I was under his care. He also diagnosed me with Fibromyalgia and gave me treatment for this. I was told by both him and the nursing staff that pains were not normal and I was finally validated on this and the fatigue I felt in everyday life. Obviously, this has all led to some changes in my life. I never went back and finished my master's degree in special education, but instead started working as an early years teacher, which I enjoyed very much. Since 2013, I haven’t had a meal prepared by anyone other than myself, some friends and family members.
I saw a pattern that every time I ate out, I got anaphylaxis or an allergic reaction, and it’s hard to know what to avoid when triggers are unknown. I often carry food with me and know what my safe snacks are. This, of course, complicated life a bit, but it wasn’t a hindrance for me either. I have been going overseas with food in my carry-on and suitcase - I once made a 4-day trip surviving on bread and pre-packed oatmeal porridge with sugar and cinnamon. I also brought my electric water kettle on that trip. However, despite this, I have moved overseas to work there as a teacher, and of course, this also needed a huge level of planning, as all travel is for me now. I have now adjusted to never being able to eat takeaway or a meal at a restaurant, but it has been hard at times since so much of our culture revolves around food. But you learn to live with the conditions as best as possible and adjust accordingly. And like my Tinder bio once said as a half-joke: “I have cheese in my bag” (Which was true most of the time with homemade bread).
With these conditions, I have been able to work full-time as an early years teacher in different settings. The big changes to this happened for me when I got COVID in February 2022. I caught it from work and remember waking up one morning with more fatigue than usual, aching arms, an itchy throat and feeling off all day at work. The following day, I woke up with a high fever, no smell or taste, sore throat and a runny nose. For a long period of time, I had severe fatigue, shortness of breath, feeling like a tight band around my lungs every time I tried to take a deep breath, palpitation, dizziness and was more or less bedridden. I wasn’t out of my apartment except for doctor appointments for a month, and I couldn’t even go to the closest grocery store, which was 3 minutes away. I gradually improved from the infection symptoms, but my life was never the same again. I struggled and still am struggling with severe/moderate fatigue, palpitations, brain fog, dizziness, internal tremors, shortness of breath, insomnia, sleep disturbances, tinnitus, body aches, headaches, temperature regulation issues, sensitivities to sound-light-touch- and smells. The symptoms are shifting to this day, but the feeling of moderate fatigue and unrefreshed sleep is always there.
I tried working full-time and part-time in 2022-2023, but my body was really struggling. All my spare time was spent on the sofa or in bed, and some days, my cognitive issues were so bad that I couldn’t remember where I lived and how to get home. In March 2022, I didn’t know what was happening, and I got signed off at work. Some advice from the doctors included persisting in going for longer walks every day, eating healthy, and just going on with life as best as possible. To some degree, I was and still am stuck in a body that wanted to do so much but with so little energy to do it all. I got officially diagnosed with Long COVID in May 2022 and learned about Post- Exertional Malaise (PEM). It all fell into place for me that this was what I experienced. I still tried to work and even switched jobs to one of my dream jobs that I had wanted since I started my journey to college, but I managed a month before my body was struggling so much that I couldn´t function.
I was in a meeting with multiple people both from my setting but also outside vendors, and all of a sudden I couldn’t understand the language the people in a meeting spoke. They spoke in my mother tongue, but for me, it felt like they all switched to Russian. It felt like my bodily exhaustion had reached my brain and that I was poisoned. My colleagues noticed the change and saw my paleness and hand tremors during that meeting. Luckily, all the colleagues I worked closely with knew about my MCAS and Long COVID diagnosis, so they sent me home to rest. This episode made it clear to me and my doctor (GP) that I wasn't well enough to work full time, but I refused to be fully signed off at work, so I worked part-time until December 2022.
I remember my doctor calmly looked at me and said she was going to sign me off fully from January 2023 since I was clearly getting sicker and not better. That was one of my last working days, except in June 2023, when I returned to my workplace to pack up my things because my contract ended. I stayed put a little while to chat with my colleagues and be around the kids I deeply cared for even though I wasn’t their teacher for long. I remember when I closed the gate with all my work gear for multiple yearly seasons (Norway has 4 very different seasons), thinking this would be the last kindergarten and/or school setting I’d ever work in, which brought on so much grief after starting my journey in a kindergarten as a Teaching Assistant.
From there, I moved on to doing kids and youth leadership training and working for a boarding school before I started college with my bachelor's degree in early childhood care and management. I was overseas doing exchange studies for a semester, which I really enjoyed. I started my master in special education, and managed 1 year despite being ill with allergies and frequent Anaphylaxis. From there, I worked in 2 different countries in 3 school/kindergarten settings over the next 10 years. I won’t say I’ll never return, but the nature of the work is draining in itself, and a part of me feels that this chapter is closed.
Since 2023 I have been trying to manage my new life with pacing, resting and a hell of a lot of follow ups and medical testing (sometimes they feel like they never end!). I have worked on learning more about mental health (a huge overlooked topic for people who get one or multiple chronic illnesses) and tried to live my life with some quality in between symptoms, medications, emergencies, and medical follow-ups. I still struggle daily with symptoms, and some days still involve being more or less bedridden, but I have been better at focusing on what gives me joy and prioritising this. In 2023 I started to share more openly about living my life with Long COVID and MCAS - and if my story can help someone else I’m going to keep on telling it.
This has led me to some amazing opportunities with podcasts and some newspapers, and now to be featured on this blog. I have found my community on Instagram and Threads with an amazing bunch of people who live life with chronic illnesses like me. I found the Long Covid Choir, which brings both joy and keeps me in touch with my performing arts background, which I had before starting college. I’ve also started to share content like reels of my experience and poems that are mostly about living with long-term illnesses. I often use different approaches like drawings, poems, pictures, and editing posts in Canva to get my message across to those who see my content. It’s all been a mixture of dark humour, seriousness and a hint of happiness shared over the past year on my main account, Mikromikron, and it will continue to be that way, too.
To end this long blog post (kudos to you if you are still reading!), I want to share one of my poems.
No More to Give
I’m unwell as hell, but as usual, I ride this out alone.
Not sure how, but I’ve done it before, and I’ll make it on my own.
Giving up’s not an option; this disease won’t win.
I’ve fought too long, and I’ll fight until the end.
I cry in pain, but no one hears a sound.
“They say you’re better,” but that’s far from the truth they’ve found.
I hide my struggle daily cause they don’t understand.
Putting on a smile, just moving as they command.
Until I have no strength left to give or stand.
Later, when I’m all alone, the crash begins.
Lying still in the dark, overwhelmed by everything within.
Not sure when I last took a shower or brushed my hair.
Maybe today will be the day I find some relief somewhere.
The birds singing feel like hammers hitting my head,
Making me think of when I’ll be dead.
I need rest to recover, but that’s oh so hard.
My mind is racing, while my body’s too tired to move far.
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