You Can’t Fake Swollen Lymph Nodes

 My experience with illness has always been complicated. I had many emotional problems but was never given the language to describe what I was experiencing. I told myself, and others, that I was sick with “a stomach ache” or similar, when I needed to rest or avoid a triggering situation. 

I also frequently told my teachers that I was sick so I could be sent home. I knew I was lying, but I didn’t know why. And looking back now, my stomach actually did hurt, but for reasons that no one in my world understood, including me.

Although, beyond the fib of a tummy ache, I actually do have odd physical health episodes. My hobby of hiking has been slowly brought to an end as my stamina has severely decreased. An alarming episode occurred a few years ago after a strenuous hike in Yosemite National Park. We had gone on this trail many times, but this time was different.

On the way back to the parking lot, which was about a mile away, I collapsed. My legs had completely lost strength. I tried to get up on my own but failed. My husband (who was also looking after our toddler) helped me up but just a few steps later, I was back on the asphalt of the road. 

We were far from the car, and it was getting dark very quickly. Worried tourists often stopped to offer help but I was too busy laughing at myself to accept help. Despite collapsing to the ground every 10 steps, I somehow made it to the car. 

Since then, we have tried to go hiking a few times. Each time, I can only make it 200 feet from the car before the exhaustion begins and I have to turn around.

Losing my ability to hike can easily be blamed on lack of physical fitness, lack of water, my psych medication, or just plain old “getting older”. So I’ve always blamed it on those factors and just moved on with life.

But a year ago, everything changed.

It started almost exactly one year ago, in March of 2020. COVID had just begun and everyone was very in tune with their health. 

Within 48 hours my symptoms decreased and eventually went away completely. 

But it happened again. 

And again.

And again. I noticed a pattern; my energy level and physical wellness would plummet after a period of work. 

Of course though, I blamed it on my “being weird” and my self hatred.

While I did not see the issue, others did. The comments began to bring up “Chronic Fatigue Syndrome” so I did some research. I found myself nodding along to most of the symptoms and checking all required boxes for diagnosis. I began to pay even more attention than I did before. I also experimented a little and tried to push myself to see what would happen.

As I learned more though, I found that this condition can be extremely disabling and the prognosis is not super pleasant. A percentage of those affected are so ill that they have not gotten out of bed in decades. Some are on feeding tubes, and some are wheelchair bound. Most are unable to take a typical neighborhood walk. Some have reported major consequences if they pushed themselves to go for a long walk, to test the diagnosis. Nearly all cannot work a traditionally full-time job.

Society is not supportive of this disorder and many question the validity of the diagnosis, but they also buy into the ableist belief that if people “tried harder”, they would get well. Some people, like me, believe their symptoms are subconsciously made up “for attention”. If the person afflicted by CFS doesn’t hold that belief, others around them most surely will. 

But, one thing started to reassure me that I wasn’t subconsciously “faking it for attention”.

I began to do some pretty in depth research on lymph nodes, to reassure myself of the legitimacy of my experience.

At that point though, everything clicked and I finally accepted my experience as real. But in the following several weeks, I found myself losing almost all of the symptoms that I had off-and-on for the last 9 months. I assumed I was one of “the lucky ones” of CFS, the mere 5% that recovers completely. I carried on with my life.

During the previous months, I had used different joint braces, a heating pad, muscle cream, and pain killers. But once my wellness seemed back to normal, I put all of those things back in the closet. And I honestly felt silly and guilty for spending money on things I assumed I would never use again. I felt like the whole thing was “made up”. I felt like a fraud. 

But then it came back. Certain unexplainable pains that had mysteriously gone away, had now mysteriously returned. Gradually, nearly all of my symptoms came back.

Though, as the New Year rolled in, my symptoms were quite mild. And everything seemed to be stable (including my mental health). Everything was manageable until one small hiccup triggered a chain of events.

One day in mid-January, I had a two-dose gap in one of my antipsychotics. It is a pretty heavy and important one, so I knew skipping the medication meant I was in for a rough time, but I had no idea how bad it was going to get. 

 

One day though, I was feeling a bit better. So for the first time in weeks, I went out to my workshop area and began working on a project. I stood at my waist high table for 20 minutes and painted. But suddenly, my whole body grew weak. I was able to make it to the bed before I collapsed. But it was pretty eye opening to see myself having to recover from simply standing still.

It has now been one year since symptoms began. My legs really take on my emotional and physical stress so anytime something happens, I lose the leg strength to walk and/or experience excruciating all-over leg pain. As my abilities become more limited, and judging by the pattern of increased intensity and frequency, I imagine I will at least own a wheelchair, if not begin to use one in certain situations, by the next calendar year.

When I first discovered this condition and saw the limitations, I commented to my husband that I would get to the limits where “I wouldn’t be able to go to Disneyland without a wheelchair.” Of course though, we have never actually been to Disneyland, nor did we plan on going anytime soon, but my point was made; I am physically disabled. My husband wasn’t very convinced at the time. He said I was worrying too much about the future. But now, we both know this predication has come true. 

It hurts to think of never going hiking again. Hiking in the Sierra Nevada mountains of California was practically the backbone of my relationship with my husband. We have secret spots, funny stories, great pictures, and many memories. He proposed to me at our favorite spot and we spent our week-long honeymoon on the trails of Yosemite. I have been “walking in the woods” since primary school.

Losing a beloved hobby hurts. The most frustrating symptom of all of this is watching myself lose mobility slowly over time. I can still feel my legs, and I don’t always experience pain. But any extra exertion, physical or mental, and my legs bite back. 

I am doing well today, though I have been doing the recommended method called “Pacing” (Not to be confused with the PACE trial, which is an abomination and an embarrassment to the scientific community). With pacing, I pay attention to my body and pace myself.

I have noticed a few red flags for exhaustion, such as the return of my soaking wet stinky night sweats, which have caused me to require a change of clothes as much as three times per night. 

I struggle a lot to “take it easy”. I’m not sure why, but I have no chill when it comes to work, especially work that I want to do. I have been known to devote every waking moment to a project, even sometimes skipping sleep, hygiene, and obligations, if I am in a manic episode. 

But also, I live with severe guilt if I am not productive for a large portion of the day. I feel obligated to do work (house cleaning, working on a project, etc.) every day, as per my standard daily schedule.

Ignoring my schedule and ignoring the guilt is extremely hard, so most of the time that I am being forced to rest due to CFS, I feel very guilty. Especially if I am experiencing little symptoms and being proactive by pacing to build up my energy. 

Being too exhausted to swallow or move a limb is a very sad way to live. I depend a lot on statistics and I know that I have a realistic possibility of being wheelchair bound, or even worse, bed bound.

While it has been a year since my Chronic Fatigue Syndrome symptoms have been in my life though, there is another anniversary right now too: my emotional stability.

Two years ago, I started on psych medication and became mentally stable for the first time in my life. I finally left my bed and I have begun to live my life like I have always dreamed of.

But now, CFS has put me back in bed, and there’s a chance I could be there permanently. I joke with my husband that I should stop my medication because if I’m going to be in bed, I may as well want to be there. 

I am joking though.... mostly. 

Love always,

Duckie May - The Mad Hatter and The Maker of The Things