Susceptible Persons : My Story

It's December. I awaken with flu-like symptoms. My microbiology and nursing background tell me to wait out the pain; which for me is quite bad. The first time I got the flu I was 17 and in college, which means the symptoms are a lot worse for an adult body that has never "seen" flu virus before. It means that any subsequent flu symptoms carry the echoes of the 'baseball-bat-bashing-my-lumbar-region' pain which were so memorable from that first encounter. This flu was odd though, as I did not feel that oh so familiar lumbar nerve pain, but rather had a concentrated throb in my jaw with overall, dull body aches. 

("I knew I shouldn't have tried to help those zombie children...")

Day 3 hits and I am not sure how much longer I can suffer. I try the typical pain medications. First an NSAID (despite not seeing inflammation), and then Tylenol. I calmly tell Christian that I think it may be time to go to the hospital; the pain was so great that I had to convince myself not to remove the source of the pain, my masseters (chewing muscles on your jaw), with a carving knife. At the hospital, the doctor hears my symptoms, and said, "you've got the mumps". I hadn't shown any swelling in my face, just felt the pain; and also had an up-to-date MMR vaccine, so I was a bit surprised. He said there was a mumps epidemic in Ireland at that time, and that he was seeing about one case a day, and for that day, the one case was me. They quickly got an IV with pain killers into me, and sent me home with codeine tablets. 

Me not wanting to move my face, and getting pumped with fluids and pain killers.

I had no idea how long the recovery from mumps could be. Typically, because of the amount of inflammation caused by mumps, it means 3-4 weeks for an adult to fully recover; what a pain! I had a life to get back to, but figured I'd wait it out. As a known quantity, I could be patient. I could feel myself getting better from the virus, but then something strange happened. My body wasn't regaining strength, rather it was getting weaker. Much weaker. So much so, it was difficult to stand or walk. The line between the mumps and whatever this was became blurred; I was supposed to be better by now. 

If you've seen "Kill Bill", it was akin to when Uma Thurman is trying to 'wiggle her big toe'. Every movement took extreme thought and effort. I had to will each piece of my body to move like the most intricate puppet ever. Luckily my husband is strong enough to carry my small frame up and down stairs so that I could use the toilet, take a shower (sitting down), or sit on the couch near the sun. By 2PM, I would have mentally prepared the whole morning to walk the 40 minutes round-trip to pick up Neva from school, but the trek would completely exhaust my energy. We got an electric scooter that myself and Neva could both ride on, which helped out tremendously as we don't have a vehicle. If I wasn't able to walk by then, I'd have to ask one of the school mums if they could pick up Neva. I could only manage to get groceries once every 2 weeks or so, and I would risk collapsing in the store; I tried always to go with Neva so she could be a shoulder to lean on while we hobbled home. 

Every evening I would look out the window into the night and think "maybe tomorrow". Maybe tomorrow I'll be able to... 'walk to the toilet on my own in the morning', 'be able to think clearly enough to read', 'be able to get up before noon', etc. And every morning, I'd look out at the (unseasonably sunny spring in Ireland) window and think "maybe by noon?" My goals became very small, but not so simple for my body at the time. Every day for 7 months I looked out that window, wondering if "tomorrow" would ever come. Wondering how long can one stay like this? At what point are you not living? Not in a macabre way, mind you, but just realistically. Stephen Hawking and others with various motor neuron diseases had to find ways to express their meaning in life with minimal mobility; what will I do?

After 7 months, I had my first day of energy. I got more stuff done in one day than I had accomplished in the entire 7 months of convalescence. All of my fears of "maybe it's fake", "maybe it's all in my head", "maybe I'm just lazy" seemed to fall away and I was more determined than ever to get through this ahead. The thing about being in such a state, is that it's not easy to get to a doctor (or anywhere really), especially without a vehicle, having just moved to a new town (in a different country), with a husband who works 9-5, and a child to take care of. It was a long road. One week may have 3 "good days" and the next week, only one. The biggest fear was the "battery problem". I was at about 30% maximum battery after that 7 months of about 10% battery. At 30% I could get things done, but only have about a 2 hour window, and be pretty exhausted afterwards. However, it could also go from 30% to 0% without notice. That was how I collapsed the first time in Tesco with Neva by my side. The electric scooter was a god send when my legs barely worked; at least I could get home if I could balance for a few minutes. 

The view from my bedroom window that helped keep me grounded. 

Despite my muscular body having "good days", I was getting sick regularly since I was out and about more. My immune system seemed completely shot. I was strict about Neva changing clothes when she came home from school. I'd fly off the handle if she forgot, because I was sick and tired of being sick and tired, and saw her school clothes as a disease ridden enemy. I was strict with food when I could be : no gluten, no inflammatory foods, no cheese, etc. At the same time, I didn't always have the energy to cook and would reach for something quick and easy like eating sauerkraut out of the jar or peeled carrot sticks. I was hovering around 95 pounds soaking wet for much of my convalescence. 

I was cautiously hopeful I could have my 34-year-old body back...eventually. The year prior I had cycled 1000 miles pulling 100 pounds of weight up and down the Adirondack mountains with my child without difficulty. I'd been vegetarian since I was 10 years old, became interested in nutrition as a hobby when I had to take a nutrition class as part of my nursing track at 18 years old, had cycled over 100,000 km over the previous 8 years over very difficult terrain, with a child in tow (check out our travel adventures here). I never smoked, rarely drank, and exercised for fun. I was SO fit after one cycle tour that I had to 'train down'. I created a triathlon 'train down' regimine: running with Neva in a trailer, cycling with Neva in a trailer, and swimming with Neva on my back 6 hours a day, and slowly decreased to 4 hours a day, then 2 hours a day until I could finally live my life normally again. It didn't even occur to me that something like this could happen to me. 

Me cycling with Neva on the 'Aspen Alley' portion of the Great Divide

On a day I was feeling particularly good, I had a doctor's appointment set up related to chronic fatigue diagnostics, and Christian accompanied me just for fun and we rode the scooter together smiling and singing down the hill and in overall good spirits. As we were chatting and waiting for the doctor, my head suddenly dropped, my neck muscles had given out, and I slumped to the side of my chair for support. I could manage with great difficulty to slowly move my tongue and lips enough to get some words out, but was capable of nothing more. My name was called, and Christian knew the drill, he carried me in and sat me on the chair opposite the doctor. After she questioned me multiple times about if I was depressed (she continued questioning me, despite my answer of "no" each time from myself and my husband), she started to consider I may have a serious physical condition. We tried to explain how it can come and go, and my "battery" can drop without notice. We knew the effects, but not what the cause was. After about an hour of difficult talking, I started to "come out" of it. The doctor was able to first hand witness what my daily struggle looks like. From seemingly normal, to incapacitated, to partially capable again; you can understand why I took nothing for granted and could never feel comfortable committing to plans with someone as I do despise going back on my word. 

No matter how puny I feel, Christian always lends me his hand.

While the doctors poked and prodded me over the next few months, and I had scans, and bloods, and appointments with varying specialists, there has yet to be any concrete evidence as to what is wrong. I put on my researchers hat, but that can only go so far. Sometimes mumps can translocate to the central nervous system (CNS) and cause problems, maybe the mumps triggered an autoimmune response; since I have psoriasis which is considered an autoimmune disease maybe it's related, maybe it has nothing to do with the mumps and that was just coincidence? I would hope for a diagnosis, even if it had a poor prognosis, just so I could know. The diagnosis never came though.

2 years later, Dec 2019, I finally start feeling like myself. I had gotten strep throat and had to take some antibiotics, and had gone through 2 months of UVB light therapy for my psoriasis which helped bring down my overall inflammation. I am not sure if either of these things helped, but I do feel I was capable of getting back to 100% after that. I suspect since the UVB treatment did take away the physical manifestation of my psoriasis (temporarily), the reduced inflammation allowed me to finally heal and allowed my body to get ahead for the first time in 2 years. This December, the whole family did get the flu, a normal but annoying flu. I was the last to get it and the first to start recovering. It was the first evidence I had that my immune system was functioning properly in the last 2 years. Was it a fluke? Would my immunity fluctuate the way my energy had in the near past? I was happy to accept the "win" for now that my disease is currently in remission. Then, news of Covid-19 hit Ireland. 

Normally I wouldn't show a picture of my back, but on the left you can see the white spots around the henna which are psoriasis, and the right photo there are no spots at all. The spots can cover about 15%+ of my body on a normal basis.

In late January, multiple Chinese New Year events were cancelled because of coronavirus. Again I was forced to think about my current health, and those like me with a physical disability, autoimmunity, or age-related physical disease. The anxiety of going out was always there for us; we were guarded going into public before it was cool. Whether there will be a ramp for you, or whether you'll catch something that most people carry normally but would make you sick for 2 weeks, or whether you will be able to safely reach items on your list; that is a daily reality for many. We were also stuck at home for weeks or months on end before it was cool. Did anyone check on us, or care about our mental health? Think about all the ways people are complaining about being 'locked in' and crying 'martial law', when there are many people worldwide who live this way daily without a pandemic. 

CNY festivities in Dublin the week before the main CNY gala was cancelled.

It doesn't help when the news and people on the internet say things akin to, "The coronavirus isn't anything to worry about! It only affects the old, and people with preexisting conditions!" which completely invalidates the value of all of our lives. It also insinuates that some people are above it all. Whether because they are young, or because they have done all the right things in order to have a good immune system. Again, look at where the value in society is pointing. Only the young are valuable? Only those who "do all the right things" deserve to live? The air of judgement is palpable. I doubt there were many much fitter and healthier than I was, and still I was afflicted with chronic fatigue and autoimmune symptoms in my prime. Remember, before spouting your dismay at the current situation, that someone within hearing distance may have to live this way every day, pandemic or no. Saying things like, "oh my gosh how could anyone live without leaving their house much in a few weeks, it's so hard to find something to do, and it's so hard to go out right now. I can't even frequent my favorite coffee shop" demeans the value of not-so-able-bodied people who aren't able to do that normally. Think before you speak, and be appreciative of what you can do. Think of it as an opportunity to get creative.

When I feel badly, I try to at least look normal to help myself feel normal. I also have my trusty sloth by my side to hug when no one else is around. 

In all those days in bed, looking on hopefully from one day to the next, I had a lot of time to think. Life isn't worth much without people around to enrich you. If we all aren't lifting each other up, then what are we doing? That energy to place judgement on someone else could be energy put into lifting someone up. Now is the time to put aside all of that pettiness that social culture teaches us to have so we can fill our lack of friendships and emptiness with material things, but that never works. It's the people that make life worth living, it's each other. You don't need to know someone that has an affliction (though you undoubtedly do), you just need empathy. Take the time to think about how the most vulnerable persons are affected by your actions. Take the time to think about what you could do today to make someone smile. A shared moment. This is just my story, ask someone else about theirs. We don't want pity or special treatment, we want to be seen, considered, and ultimately, to be part of those shared moments. 

I see you friends, I empathise with you, you are worthy.