Being diagnosed with multiple chronic conditions made me look forward to the covid vaccine but did cause me to worry at the same time that any of my conditions could worsen because of the vaccine. Although I do trust in science and absolutely believe that the vaccines are thoroughly tested, I assumed that there weren’t much people with ME/CFS within those test groups.

To get vaccinated or to not get vaccinated?

It took me quite some thinking to choose if I want to get the covid vaccine or not. I'm an absolute believer in science and trust that all available vaccines have been thoroughly tested BUT I also know that there are no certain tests regarding how the vaccine might effect people suffering from myalgic encephalomyelitis. Even though I only have a mild to moderate case of ME/CFS, always depending on the circumstances I’m in, I definitely didn’t want it to get any worse. With ME/CFS, almost everything can push you over the edge and send you spiraling downwards with a long recovery time back to your personal baseline or sometimes no coming back at all.

Talk to your doctor

I’m in the privileged position to receive medical care from a doctor specialized in ME/CFS. Knowing me and my personal health history he advised me to get either vaccine (back then AstraZeneca and Biontech/Pfizer were available). I might add at this point, that I never had any troubles with any vaccines BUT got my last vaccines before I got ME/CFS. However, the smallest little cough or a runny nose happens to impair my levels of functionality for weeks up to months. Every little cold makes me bedridden or at least housebound, because all other (possibly autoimmune) symptoms flare-up. Not a very promising sight in the face of a seemingly far more aggressive virus than the common cold. So even though the vaccine may weaken me for maybe some time, an actual covid infection would be devastating. ⠀

Getting the vaccine

The vaccination itself went relatively smooth, my date got scheduled, the paper work could have been a bit less chaotic, but the doctors at the vaccination center were all nice and caring. Since I’ve written down all my conditions on the questionaire, a doctor asked me if ME is a form of MS? I tried to explain it briefly (“It is more like long covid…”) and then the doctor said “Ah, you mean fatigue” and send me to the next doctor that actually did the vaccination. I was told by my own doctor to stay for observation a bit longer than usual (45min instead of 15min) but luckily I got no allergic reaction =)

3 rough days and one week of sickness

Back at home I just felt a bit dizzy and tired but didn’t pay too much attention, since I felt dizzy already when I got up that morning. I went to bed early since I already prepared to just rest. During the night the more intense immune reaction started. I got intense fever chills, cramping in hands and legs, felt nauseous and got a horrible migraine attack. Not gonna lie, that first night was a nightmare. I fell asleep somewhen in the morning for a couple of hours and of course woke up completely exhausted and feeling really shitty. I felt really sick for three days, the fever chills came back now and then, but not in the intensity of the first night, but the nausea was horrible and my brain was replaced by pulsating pain. I tried to get through the three days under a heating blanket and ice packages on my head that I had already prepared - it’s not uncommon for me to suffer from migraines. After three days I’ve mad it through the intense initial phase and was still sick for four additional days but doable.

A good decision

Most importantly: After that week of sickness I was mostly alright again, waves of slight nausea kept coming and going throughout the day and it happe4ned that I broke a sweat out of nowhere, just sitting on my couch, but none of my previous chronic conditions has worsened in any way, which was my biggest fear. Remember what I told you before: Every mild sickness like the common cold can wipe me out completely and cause an impairment of my functionality for weeks up to months. The vaccine did that for a week and then I was back to baseline =)

However, at this point I want to acknowledge my tremendous privilege to get to choose if I want this vaccine or not and that I’m grateful and relieved to have gotten the first dose.