By Nicole Carfagna – I have always felt sick to some extent and had to use sick days when I worked. Due to the fact that a lupus diagnosis takes six years on average, it took years of doctor visits until I finally got an answer to my complaints. I worked through my symptoms because they weren’t debilitating and I was able to get by.
Since being diagnosed in 2011, my lupus has progressed, and I’ve been unable to work full-time for two years now. Coming up on a big and upsetting anniversary like that, I’ve been reflecting on everything I’ve gone through in that time. Luckily, I’ve made progress, especially in the past year, but it came with two more diagnoses – fibromyalgia in 2016 and POTS (Postural Orthostatic Tachycardia Syndrome) in 2017. I am absolutely not where I want to be, but I am on my way.
Despite being chronically ill, I am able to work one or sometimes two days per week plus hours at home and make some money from disability. So what else do I do? Well, here’s how being chronically ill is a full-time job…
When I worked full time I’d wake up, get dressed, drive to work, DO work, sometimes do extra hours after work, drive home, eat dinner, relax, go to bed, repeat.
Now, I’m not working 5 days a week. But I have a lot of “work” and responsibilities that I need to stay on top of. Every. Single. Day.
1. Waking Up: This consists of evaluating my pain level. If I’m decent enough to get out of bed, I’ll make myself some coffee and go to the couch until I fully wake up. However, this is a very rare occurrence because the mornings are usually the worst time for me. So waking up normally consists of laying in bed, taking my morning meds, foam rolling my hips, and very slowly sitting up and then getting up (IF I can…there are some days where everything goes out the window and the day is spent in bed. But I try to at least make it to the couch every day, even when I’m in a ton of pain).
2. Coffee & Gatorade: I hate to admit it but I drink a cup of coffee every day. It’s NOT good for POTS, but I enjoy it and it makes me happy. I am always sure to drink a bunch of gatorade when I wake up and throughout the day so I make sure to keep myself hydrated despite my morning “treat”.
3. Giving My Body Time To Adjust: Like I mentioned previously, mornings are typically the worst for me. I usually have a headache and am most dizzy in the morning. So sitting up on the couch, hydrating (with gatorade & coffee haha) and trying to just simply relax helps my body adjust to the day. Sometimes it works, sometimes it doesn’t. *On the days that it doesn’t, I make it a point to get up and move around at least once every hour for about 15 minutes at a time. Whether I have the energy to do things around the house such as laundry or if it’s something as simple as walking laps around the house or walking the dog, I move.
4. Breakfast & Morning Meds: I have a number of medications I have to take with food. While there are some I take immediately when I wake up, some I have to wait to eat for. Making food is a feat in itself so with the help of others, I’ve come up with easy meals to have for breakfast. Some of my favorites are gluten free instant oatmeal with cut up fruit (preferably strawberries on top), avocado toast, and the easiest (but most frowned upon by my doctors), a banana and a Kind bar.
5. My Day: On a day where I am not confined to the bed or couch, I usually make lists of things I have to do. Due to brain fog, lists are life. However, my doctors have told me to pace myself…and I also can tell because I tire very easily because I am so weak. So I complete a task, and then rest. I feel like I’m back doing Applied Behavior Analysis where I’m working and then “rewarding” myself by resting. I have a Fitbit that I use with my doctor to make sure I do not have too few but also too many steps every day. Pacing myself is KEY. Doing too much will undoubtedly send me into a flare but doing too little is detrimental to my health as well. There are days I have doctors appointments, infusions, follow ups, physical therapy, yoga and I also try to go to the gym. I see my doctors more than I see my friends (luckily they’re all awesome).
6. Lunch & Meds: Once again, meal prep is tough energy wise for me a lot of the time. I try to eat leftovers from dinner the night before, or I’ll make a sandwich or soup. I have to make sure to eat because there are medications that I take in the middle of the day as well.
7. Napping (Maybe): Sometimes there are days where naps are necessary. I try to limit them to an hour as per my doctors.
8. Dinner & Meds: Luckily, my boyfriend likes to cook. On REALLY good days, I cook. I love cooking but unfortunately it’s extremely draining. I’ve found a few recipes I love which I’ve listed in the recipes section (and I’ll be adding more), but I’m still always on the lookout on Pinterest. I love using a crockpot in the winter because if I have enough energy in the morning to put the food in, I won’t need much energy at night to take it out! And again…I take the most medication with dinner so it’s very important I eat then.
9. ***EATING***: I mentioned meals three out of the seven previous bullets so far and it hasn’t been brought up that I have a severe lack of appetite. That makes eating so much harder. This is one of the toughest parts of my day. I used to LOVE food. I mean LOVE. During each meal I’d be thinking about my next meal. It’s a really horrible feeling having no appetite ever, and eating because I HAVE to. So the majority of days, eating is a job in itself. Imagine how you feel when you have a stomach ache or are a little nauseous or you’re simply not hungry, and you NEED to eat to take medication. And not just a snack, a whole meal. It’s freakin HARD. I’ve been working very hard on it with all of my doctors, and it’s something that is difficult and embarrassing to talk about…but forcing myself to eat is absolutely a job in itself. We all have come to the conclusion that my lack of appetite is most likely due to my lupus meds, and all of the other meds and vitamins I’m on, but it’s something that I need to work through.
10. Showering: Who know bathing would be a job? I’m 31 and I own a chair for the shower…and sometimes that isn’t even good enough. POTS causes my body temperature to get all out of whack and showering makes me feel like I’m going to pass out, so I have to take lukewarm or cool showers…which I hate. It’s not fun. It’s exhausting too, and painful. The act of washing my hair can bring tears to my eyes if I have joint pain. I’ve learned that body showers are awesome and dry shampoo is a life saver.
11. Bed Time: Like showering, who knew going to sleep would be a job? Benlysta has caused insomnia. Also, pain causes insomnia…that’s where the term “painsomnia” has come from. So there are a lot of nights where I can’t sleep. I have a few strategies I use, my favorite being meditating with the app “Headspace”, but I find myself awake at 3am more nights than I’d like to admit. That’s where I am writing this blog right now. In bed. At midnight. With no sleep in sight.
I hope to be able to go back to work full-time eventually. I love working. It’s bizarre the things you don’t realize you appreciate until you can’t do them anymore. But for now, taking care of myself is my job. A FULL-TIME job. Brain fog makes everything that much more difficult so I make sure to write everything down (or at least, I try to remember to). I also have to keep track of all of my medication throughout the day. There are certain ones I cannot miss, others that wouldn’t be a problem if I missed for a day. Certain meds that if I doubled up I’d get very sick, and another that’s kept in the refrigerator so I have to figure that out every day.
So for all of you who can’t work full-time, give yourself a little credit. Taking care of yourself is a job itself…and quite frankly, the most important one I know of.
About The Author
Nicole Carfagna is 32 years old and lives with her husband and their dog Max on Long Island. She is a special education teacher currently on disability due to living with chronic illnesses. Although her body forces her to sit still often and prevents her from doing some of the things she loves most, she found her way to writing, which has become her passion. Not only does it help her cope, it is a vehicle through which she hopes to inspire and help others living with chronic illnesses.