People with multiple sclerosis (MS) are often given dire warnings regarding the necessity of getting vaccinated to protect us from the flu, COVID-19, and even shingles. After all, some of us in the MS world may have reduced immunity because of the medications we take.
But I feel that the way vaccines can affect us and our respective MS is also worth mentioning.
Vaccines Are Important but Not Worry-Free
For my part, I follow the experts’ advice on taking vaccinations for my own protection, and I also believe — as many do — in getting vaccinated for the health of society at large. But that doesn’t mean I’ve sailed through these vaccinations with no consequences. Far from it!
The aftermath of two recent “jabs” took me into what it feels like to be completely disabled. I found myself immobilized, because my body refused to move, finding it much more comfortable to remain still. Thank God it was temporary.
The second COVID-19 and shingles vaccines left me wondering if this was what the end stages of MS feel like. What is so frightening is how quickly the vaccines affected my nervous system.
First Shot, No Problem; Second Shot, Big Problem!
Both David, my partner, and I had signed up for our second COVID-19 vaccine doses online without any fanfare. The first shot, which we’d both taken a few months earlier, resulted in a bit of tiredness but nothing alarming. So we went about our business as usual. If that is all that happened with the first shot, the second shot should be no big deal.
The day of the second dose was warm and not ideal for my situation with MS. This is how the day unfolded: We took David’s truck, because he had to do some errands. Taking the truck always means I have to climb and expend energy. This was not a great start to the day! I think back on it now, and thank goodness I use a wheelchair and don’t have to rely on walking. I just know I wouldn't have been able to walk.
After we took our second COVID-19 shot, we left the facility to go home. At that point I was probably developing a slight fever. Most of us with MS know all too well that raising body temperature results in lack of movement due to weakness. I did my best to hold on until I got home, but alas, I was in trouble before I even left the facility. David then had to get me into the truck. That was a fiasco, because my torso kept collapsing. But he did manage to get me into the truck.
My Plan for Dealing With the COVID-19 Booster Shot
This strange pseudoexacerbation has left me confused about what to do next.
Should I consider myself exempt from the COVID-19 booster shot because of my reaction to my second dose?
What does all this mean in terms of my own beliefs, which are the opposite of the anti-vaccine community in our world?
While I know that my feeling unwell was a pseudoexacerbation, or temporary worsening, of my MS — not a full-on relapse — the whole scenario seemed like a lot more than that. So when I do take the booster shot, or any other “hard-hitting” shot, I will take some precautions instead of not taking the shot at all. This is how I would do things differently:
- I would enlist a good friend or someone I trust to help me for a whole day. The person can just sit where they can hear me call them. I have a good occupational therapist friend who spends her time knitting, which is the sort of pastime that would be perfect.
- Once a fever or other side effect is activated, I am weak and cannot function normally. My person should be able to help me transfer from the couch or bed into the wheelchair so I can get to the bathroom as needed.
- The person will bring me water, Tylenol, and whatever else that may be necessary.
- I would speak to my neurologist about whether there are any ways I could avoid or reduce the severity of my post-vaccine symptoms.
The idea is to just lie flat until I start feeling better and my energy is restored, because thankfully, I know I will eventually recover, though it might take a couple of days. Please keep in mind, like I am, there is no MS exacerbation going on, just a pseudoexacerbation.
These are simple steps that I have thought about and think are important, because the pandemic is here to stay. Why not make things easier by accommodating both the MS and the pandemic?