By Melissa Marquis

I have a seemingly normal life, I think most days, as I stroll into work, or run past a child learning to ride their bike on a trail. I look and sometimes even feel normal. But if I’m honest, most days I don’t feel normal. I can’t think of a day in the last nearly 15 years that there wasn’t something causing me pain, keeping me up at night; a day when I wasn’t feeling fatigued or struggling with brain fog, and lately I’ve had trouble with more and more of my organs.

On the good days, I notice the symptoms and determine which, if any, I need to pay close attention to; and if I can press forward,- I move through the day without my disease on my mind (too much). Oh, but the bad days, well those are all too familiar and uncomfortable. I often feel like I am playing a game of whack-a-mole with my body. It’s never just one problem that I deal with… and on the particularly bad days it is numerous serious problems.

Scleroderma is a rare autoimmune disease that causes excess collagen to be built up in a person’s connective tissues. It causes fibrosis (scarring) in the tissues and organs. There are four types of scleroderma—three of which can also affect the internal organs. I have limited cutaneous systemic sclerosis, meaning I have some skin tightening on my hands and feet; but it’s systemic. My gastrointestinal (GI) tract is primarily affected. I suffer from heartburn, reflux, hiatal hernia, oesophageal spasms and constrictions. Food and pills get stuck in my oesophagus, and I routinely need to have my oesophagus dilated. I have delayed peristalsis (movement of food throughout GI tract) in both my oesophagus and large intestine. Due to this, I have developed recurrent SIBO—small intestinal bacterial overgrowth—which requires frequently rotating my antibiotics.

I also have some trouble with my heart at times in the form of arrythmias. Scleroderma can cause electrical irregularities in the heart leading to palpitations and arrythmias. Although, I don’t know definitively if this is a result of the scleroderma or just because.

I’ve also recently been diagnosed with lung fibrosis or scarring on the lungs. The scarring I have is in a location atypical for scleroderma, and it is actively being investigated. I also recently had a bout of pancreatitis, and again work-up is underway to determine the cause of that as well.

I thought I’d take you through a comparison of the contrasting days I experience.

A good day

I wake at 4am to begin my day, feeling refreshed after sleeping a solid eight hours. I didn’t wake in pain overnight and I don’t feel particularly stiff this morning. This feels good. I take my prokinetic medications (drugs that work to speed up the emptying of the stomach and the motility of the intestines) and then I spend the next few hours drinking my coffee, eating a light breakfast, doing some meditation and prayer, and maybe a little strength-work with my dumbbells or kettlebell. This time is mostly devoted to seeing how my gut will function that day. On this day, things are good. I shower and get ready for work. I take the rest of my morning medication, prepare my lunch for the day and leave for work.

I work between the hours of 7:30 am-and 4 pm. I enjoy time collaborating and engaging with my co-workers during the week. I enjoy the challenge my work brings. I like working on projects and seeing progress made; something most task-oriented people like to say! Throughout my day, I’m not experiencing too much pain; however, if my back, shoulders, or stomach begin to flare, I quickly switch from standing to sitting at a desk and I heat up my heat wrap to provide some comfort to my body. Then I am able to quickly re-engage in the work I was doing before this little distraction.

Lunchtime rolls around, and I join my coworkers for lunch. Lunch usually consists of leftovers from dinner last night, or a ham and cheese sandwich with pretzels. My gut has prevented me from being able to fully enjoy food over the past four years. Much of how I feel is dictated on how my gut feels. Today is a good day. I can eat and not feel sick. I don’t need to worry about how I am going to feel in an hour or two. If time and weather permit, I try to squeak in a lunchtime walk. I return to finish the last few hours at work, usually filled with meetings. 

The weather is beautiful outside, and since I have no other meetings this evening and I feel good, I enjoy a nice run outside. Returning home, a short time later, I make dinner, take my evening medication and enjoy either a little television or a good novel. Because I get up so early in the morning, and due to needing a full eight hours of sleep, I retire for bed around 7 pm for a little more reading, then I’m asleep by eight.

A bad day

After a very restless night, due either to pain or my stomach being out of sorts, I wake around 2 am. Unable to return to sleep, I get up to start my day.

First thing I reach for is my large heat wrap for my stomach. I throw it in the microwave while I take my medications for the morning and prepare ginger tea. This day, my gut is rumbling and feels like its fermenting. I’m not hungry. Recognising these symptoms, I know I will experience numerous rounds of diarrhoea shortly. After my fifth or sixth trip to the bathroom, I realise it’s going to be a work-from-home day. I make some oatmeal and yogurt and hope food doesn’t irritate my gut more. I begin taking my two weeks of antibiotics to stave off the excess small intestinal bacteria that’s causing my symptoms. I should start to feel better in a couple days.

I sit in my lazy boy recliner with heat on my stomach, a hot cup of tea and a book. I try to engage in my normal morning routine. I squirm in the chair because I can’t get comfortable. Not only is my stomach upset, but I am in a lot of pain. I determine the pain is what originally woke me up. My shoulders have been particularly bad—frozen shoulder again! When I try to roll over in bed, I realise I can’t move my arm intentionally. So, I pick it up to move it, which erupts in severe tissue-tearing-like pain. This happens over and over, every 30 to 45 minutes or so throughout the night. Ice helps to numb it so I can fall asleep for a little while. Pain medication does no good. Usually, my lazy boy recliner is one of the only comfortable places I can rest in when my shoulders flare like this. I drift back to sleep for about 30 minutes, only to awaken for another bathroom run.

8am… time to turn my computer on and try to get some work done. I read through my unread emails, look at my calendar to see what meetings are on my agenda for the day. Good—no in-person meetings! I open up an emergency plan I am writing for work and continue writing and editing. But wait, didn’t I just read that same paragraph? My mind is foggy. I can’t seem to focus on what I need to do. I struggle with typing and concentrating. I press on, but realise I am not getting anywhere. I decide it’s a “light” workday—there’s nothing pressing on my agenda, including meetings that can be missed. So, I message my boss to take a sick day. I recognise that I will be no good for anything today and just need to rest. I take some more medication, more tea, a heat pack on my stomach and ice on my shoulder and try to sleep. 

The rest of this day is a little calmer—at least regarding my stomach. Most of my GI issues are in the morning. I make a crock pot of homemade chicken soup to eat for the week. That will help to temper my GI symptoms a little. I want to go for a walk or do a little exercise but decide against it. Hopefully tomorrow will be a better day. I take an Epsom salt bath prior to bed… this is the only trick I have learned that eases my pain enough to stay in bed all night. I take the rest of my evening medication and go to bed before 7 pm. Here’s to a better night’s sleep and a better day tomorrow.

If you would like to contribute a piece like this for our A Day in the Life awareness campaign for rare diseases, please contact rpender@rarerevolutionmagazine.com

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