“Are you getting the vaccine” is a question that I get asked every day…
The answer is “not yet” — here’s why.
*** Scroll to the bottom ***
My specialist agrees with my decision to not have the vaccine (yet).
Due to the severity of my multiple diagnoses.
*This confirmation is based on my case alone.*
If you are blessed to be in good health, please remember this: there is no one rule for long haulers - not for treatment and not for the effects of the vaccine.
People give me unsolicited advice to take the vaccine because they’ve read in The Daily Mail that it helps long covid. They have the best intentions but they are way out of their depth.
It plants a seed that the vaccine is a remedy for long covid and this is simply untrue.
I'm neither in the 'anti-vax' camp, nor the 'pro-vax' camp. I'm in the 'I don't want to get worse from the vaccine OR get covid again' camp.
Its a catch twenty-two, leaving us torturously torn.
It's a profoundly difficult decision to make, which naturally triggers our mental health.
We need support and compassion from those around us, WHATEVER we decide.
Post-vaccine, some long haulers are feeling much better, some are the same and some are worse + even have new symptoms!?
For those without illness, the jab may result in fatigue for a few days. For some of my friends, they’re bed bound for two months and starting their recovery all over again.
Those that follow me on Instagram may have read screenshots that long haulers have sent me, which they’ve consented for me to share on my stories.
I’ve put some of them in an Instagram highlight called ‘Vax stories’.
It’s important to acknowledge that long covid is a very broad spectrum of illness.
It begs the question, can we really compare the effects of the vaccine with long haulers that have entirely different symptoms from us?
It’s too early to say.
We’re all grappling for patterns, data — something to base our decision on.
I personally find it helpful to compare notes with those who have similar diagnoses and symptoms to me. I’m keeping track of their progress post vaccine.
The truth is, we’re still in the beginning stages of collecting data and watching the short-medium term effects of the vaccine in the first 1.5 year cohort of long haulers.
None of us are really going to know the effects of the vaccine on long haulers and even non-long haulers until years to come.
I’m a human experiment.
So is anyone with long covid.
So is anyone who takes the vaccine.
Regardless of whether you’re a long hauler or not, I’m pro-choice. I totally understand the fear of the side effects and I of all people, deeply understand the wrath of covid.
If we just listened and tried to understand why someone thinks the way that they do, instead of forcing our own opinions onto them, we’d be living in a more compassionate world.
Where does that leave me?
I'm this reclusive hermit who has to stay away from people and places because a covid reinfection would be lethal. Anyone who knows me, knows it's the epitome of who I'm not.
It's really bloody hard to live this way.
It's Russian roulette and we have to decide if we want to play - win some, lose some or stay away from the casino that is the outside world. 'Losing some' isn't a risk I can afford after 18 months of hell.
For now, given the precariousness of my situation, I wholeheartedly believe that this is the best decision for me right now.
Though, I'll need to get the vaccine at SOME point..
I’m planning a Portugal trip next August for my cousin’s wedding (hopefully I’ll be fully recovered), so I need to figure out a plan!
I’m seeing Dr Lyon soon. He’ll have the results of my long awaited T Cell test! I’ll ask him about vaccine updates plus his thoughts about me getting the jab before next August.
I’ll keep you updated folks.
In the meantime, I hope this blog post is helpful for you.
Let’s keep learning from each other. Knowledge is power.
The journey continues…