Chronically Ill Through COVID-19

The COVID-19 pandemic as well as my spondyloarthritis (SpA) have tossed me in so many directions over the past 2 to 3 years - fear, panic, fatigue. I feel at times I cannot take any more of it. The physical and emotional whiplash alone has been exhausting. Unfortunately, my chronic illness and the threat of the virus remain. I avoid, isolate, mask up, and vaccinate myself for obvious reasons. Although I've consciously chosen to receive both vaccines and a booster, I’ve opened myself up to painful side effects and complications of chronic illness that have been difficult to manage.

Genuinely frightened when COVID-19 was first identified, I feared my body just wasn’t strong enough to withstand the virus. With such high inflammation, I wasn't sure a vaccine was the best option. There was so much misinformation about COVID-19 everywhere. With time and through personal research, fact-checking, and expert advice from my circle of treating physicians, I decided it was essential for me to get vaccinated. Now, a second booster may be needed and the fear I have of suffering through the horrible side effects again has me crippled - literally.

I truly was not prepared for the side effects of the vaccines

I listened to and read an excess of experiences online, although I took this information with a grain of salt and ultimately decided for myself. It wasn't too difficult for me to find a path to take that was genuinely right surviving as a chronically ill person. I wanted to be protected. I didn't want to end up fighting for my life in some hospital bed on a ventilator, and I knew for me it was a possibility. Ultimately, I chose to go through with it and scheduled my vaccines.

Overall, I didn’t fare well with the COVID-19 vaccines and booster, at least not as well as a non-immunocompromised person. In my experience, the worst side effect with all three vaccines was a horrendous headache, with severe stiff neck and shoulders, bordering on migraine for 14 days straight. I say "bordering on migraine" because normally I suffer from vestibular migraines where for at least 4 days I contend with severe nausea and vertigo. These specific migraine symptoms didn't occur with the vaccines, but the head pain involved was excruciating; nothing helped to relieve them.

Fatigue and full body pain for 2 weeks

Many receiving the vaccines suffered a sore arm and maybe a mild headache for a few days, like my son and daughter, but the fatigue and full body pain I had with these vaccinations was overwhelming and lasted 2 weeks. Despite the fact that my spondyloarthritis already causes debilitating fatigue and pain, the vaccines only exacerbated it.

It felt so much worse and I was downright exhausted. It was difficult to lift my head from the pillow or walk to the bathroom to wash my face. My legs shook when walking and I couldn’t hold anything due to tendonitis in my arms and shoulders. I slept for at least 15 hours each day and was still extremely tired; I didn’t think the effects would ever end. I received a good dose of what it feels like to be bedridden and I did not care for this debilitated state one bit.

I caught Covid

When I finally caught the virus in early November 2021, it was fairly mild. Symptoms were pretty much the same as when I had a vaccine, slightly less except a new manifestation developed with my breathing. I again slept 14 days straight and grappled with the headache and body pain, but this time, my lungs began to feel swollen and irritable, with a “wet” cough. Inflammation was building up within them and it was difficult to take in deep breaths. I eventually contacted my immuno-allergist who sent over an inhaled corticosteroid to assist. Inhaled twice a day, my breathing was back to normal within 2 weeks, thankfully with no lasting effect from the COVID-19 virus.

My spondyloarthritis got much worse

At the same time, I was suffering complications with treating (and not treating) my other chronic illnesses. As I waited out the cycle of the virus, my inflammatory arthritis (spondyloarthritis) worsened three-fold. I postponed biologic medications to head into surgery for SpA a month later, which caused severe full-body pain and worsened fatigue. Knowing there was a high probability of infection, I chose to undergo the procedure, resulting in complications of severe joint infection, necessitating emergency surgery to remove allograft bone and a flush-out of the joint, again postponing my biologic treatment.

My immune system is taxed, inflamed, overwhelmed, and very weak

I am plagued by uncontrolled full-body inflammatory arthritis - I am chronically ill. In the past year, I received a flu vaccine, 2 COVID-19 vaccines, as well the first booster for coronavirus. I also suffered from moderate symptoms from breakthrough COVID. It's also been a tough year with 3 orthopedic surgeries, the last one complicated by an infection resulting in emergency surgery. An ankle joint is failing me for the 3rd time and I've had to put off trial and insertion of a spinal cord stimulator that would possibly help central pain syndrome with severe nerve pain due to spinal cord damage in my neck.

I've been on corticosteroids and antibiotics with terrible side effects of tendonitis in my shoulders, wrists, knees, and feet. I have also been on and off biologics and DMARDs which, in the long run, is putting me at a much greater risk for worsening disease burden and more serious infection.

This is the reality of coping with viruses and having chronic illnesses. I managed to survive the virus, for which I am extremely grateful. It could have gone totally different, potentially much worse. It is an uphill battle being chronically ill through a pandemic, but this is why we mask up, vaccinate, avoid, and isolate. There is no other way to keep me safe from catching a potentially deadly virus and losing the battle.