MS: I Know My Body Best But Not Well
We know our bodies best, right? That's what they say, and I totally agree. If I have a strange pain in my hand, a doctor can't feel that only I can. They can only speculate as to what's wrong based on what I tell them. Pretty obvious stuff, right?
MS symptoms mimic many other diseases
Here's my problem with that; multiple sclerosis (MS) can cause many symptoms that mimic other diseases and illnesses. It's essentially up to us to determine if something is due to our MS or something else that we should have checked out. At first, I was pretty good at this. I knew my body well. But lately? Well, sure, I still know my body best, but I'm not so convinced I know it very well anymore.
Am I getting sick or is it my MS?
Suppose one morning you wake up nauseous with no appetite, feeling kind of weak, muscle pain, a headache, and feeling terribly fatigued. What would your first thought be? That you caught a bug? Or, that this is just another one of those extra sucky MS days? Because for me, it's not uncommon to wake up feeling this way in the morning but to ultimately feel better by the time I go to bed. All these hypothetical symptoms are symptoms of the common flu that can also be caused by MS.
Learning the body's new normals
Because MS symptoms are so generic that they could easily be mistaken for any number of things, people may feel frequently confused. But after a while, everyone living with a chronic illness tends to learn the new normals of their body. For me, it took a few years to feel like things "had stabilized" enough that I could definitely say that I knew my body best. But soon, I would find that my level of familiarity with myself would drastically change. Before I move on, let's first go over how my immune system has changed over time.
As a child I got the flu annually
When I was a child, I got sick every year at the same time as everyone else. For most of my childhood friends, December meant Christmas. For me? December meant Christmas, vomiting, and body aches. I was pretty much guaranteed to get the flu annually. Cold season? Yup, sign me up; if something was going around, I was going to catch it. But it's not like I was some frail, sickly kid with any more health concerns than anyone else my age. As far as I knew, this was just a normal part of life for everyone.
Things started to change in my teens
In my teenage years, I started getting sick less often. Not so little that it stood out as strange, but definitely not as often as I used to. Some years I got the flu, and some years I didn't. I almost always had a general idea of what to expect.
A nasty case of mono
But then I came down with a nasty case of mono, which hit me a lot harder than I had heard it would. This lasted for what felt like forever! But once I got over it? It was back to business as usual. Getting sick wasn't an every year kind of thing, but sometimes a seasonal virus would get me like anyone else.
As an adult newly diagnosed with MS
After I was diagnosed with MS, I felt untouchable when it came to getting sick. I felt like I could walk around care-free in a medieval town that was being hit by the black plague because, no joke, I never seemed to get sick when everyone around me did.
Between the time I was diagnosed with MS and the time I stopped Tysabri (almost five years later), I probably only got moderately sick a few times. Other than that, I only ever really got the sniffles, a minor inconvenience compared to my past and future experiences. I always imagined my immune system as a raging fire that immediately burned up any germs I came into contact with.
The change in my immune system after heavier DMTs
That all changed once I switched to "heavier" and more immunosuppressive medications. For example, after starting Lemtrada (alemtuzumab) is when I really started getting sick. I'm talking, rush to the ER sick. Fever, vomiting, muscle aches, cough, sore throat, weakness, fatigue, etc.
It was like having the worst flu and cold I've ever had at the same time. The thing is, after being tested at the ER and given fluids, it would always turn out to be something innocent like the common cold. This was the first time I felt like I didn't know my body anymore because this was not how it behaved in the past.
Catching a cold no longer put me in the ER
Things got better a lot better after I switched to Ocrevus (ocrelizumab). I mean, I didn't feel like I was walking around with a bulletproof vest like I felt I did when I was first diagnosed, but catching a cold no longer put me at the top of the ER's triage list. It took a while for my "numbers" to rise back up, but eventually, I felt like my "new" immune system was just an old friend that I hadn't seen in years.
"Oh, hey, how you been? Long time no see, what's new? Let's catch up!" How my body and my MS behaved felt familiar, but something was definitely different. "Wow, what happened to you, man? You're not the same immune system I used to know." At this point, I might have known my body best, but that doesn't mean I knew it very well.
I know my body best but not well
As I just laid out, MS can obviously change over time, and so to can the way our bodies react to MS treatments. Things can change in such a way that causes how we always knew our bodies to act to no longer be a norm we can rely on.
For the last six years or so, my immune system has changed around so much that I stopped feeling like I knew my body the way I used to. I didn't know how often I would get sick, how sick I would get, or for how long. Sure, I never knew the precise answers to any of these questions before, but I could always guesstimate based on the past. But lately, I never have a confident idea of what to expect from my immune system.
Where I am today
These days I'm back on Tysabri (natalizumab), a therapy I tolerated very well in the past. It hasn't been very long yet, but all my labs are starting to look more like they did before we really assaulted my immune system. But I have no idea where my immune system will be in, say, 6 months. Will those numbers continue to trend upwards? Will they plateau at "low but within range"? I have no idea. I have no clue how "stable" I will feel or how often/severe I'll get sick.
So right now? I would say I'm still in that grey area of not ever really being sure of myself. Am I getting sick or just having a bad MS day? The lines between them used to be so well-defined, but now they have blurred together. So while I know my body better today than I did two years ago, I still don't know it as well as I did ten years ago. My body and I aren't best friends; we're merely acquaintances, and trust is still a work in progress for us.
What about you?
Do you agree that we all know our bodies best? Trusting others may be essential, but trusting your own body might be even more critical. Do you feel like you know your body well? Like you can trust what it's telling you? Or have you grown to know your own body less and less over the years? Share your thoughts in the comments below.
Do you have a question you want to ask the community or need more information?