Inside My Daily Life With Autoimmune Arthritis
Living with chronic illness is no walk in the park. I’m not going to sugarcoat it. It fucking sucks. It’s isolating, it’s demanding, it definitely includes a lot of pain and the never-ending wall of fatigue. All of it is debilitating both physically and mentally. Add to that it’s costly as hell here in my beautiful but increasingly expensive homeland of lower mainland British Columbia. Fighting through the pain and the fatigue I accumulated throughout the day being a single mom to a toddler sends my anxiety through the roof because I can’t get everything done no matter how hard I try to. The guilt is always weighing on me no matter how many times I tell myself to not let it get to me, it’s not my fault.
I try to function like a normal person, solving problems or listening to others while my brain is moving at the speed of drying cement, but others can’t see my pain or my illness because on the outside I look healthy. I do not look like someone most people would assume has arthritis. But I have two forms. I decided to try my best and dissect into a detailed post a typical day living with rheumatoid arthritis, osteoarthritis and everything that comes with it.
Not every day is the same. I have good days, bad days and mediocre days. But never a chronic pain and fatigue free day.
I write this post so that those living with the disease understand they are not alone if they can’t get everything done, feel overwhelmed or maybe just need to hear it’s OK to feel that frustration of everyday life while living with this disease, whether a parent or not, single or married, young or old. Don’t always blame yourself. Living with chronic illness makes it really hard to function like a normal person some days and it’s not something to be embarrassed about – it takes a long time to adjust. If you are curious about the daily struggles of a young adult living with an invisible, painful and chronic disease, then here’s a look into my daily life with arthritis and everything else that comes with it. Please remember every case of chronic illness is different and often goes up and down.
My life has drastically altered from being a healthy individual to living with a severe and chronic illness. It changed me and it changed my life.
I’ve Got All The Flare
The ups and downs of bad days with rheumatoid arthritis are often referred to as a flare. On days where I have high disease activity – this is when my seropositive rheumatoid arthritis is flaring – I experience intense pain, swelling and extreme fatigue. I have continuous pain in my neck from my osteoarthritis, a non-autoimmune form of arthritis. Multiple joints in my body are in pain at any given time; they ache, feel hot and sting, making focus on anything but the pain seem next to impossible at times. The slight swelling makes my joint movement feel as if burning jelly is under my skin. Flares can come out of nowhere or after overusing my joints.
Bad days are the days when nothing really helps. I want to sleep but I can’t because pain or fatigue weighs on me like a dark cloud. It may be my infusion dates and my immune system lowers after so I tend to become lethargic for couple of days. My spirit animal becomes the sloth and my best friend is my bed. On a really bad day the fatigue can be so intense I can barely even gather the energy to shower or feed myself.
Over time I have learned to adjust my life based on this, although flares are sometimes sudden and without warning, causing me to reschedule and become a bit of a flake, even though I don’t mean to be. I am still learning to manage my fatigue better and learn all my triggers. On a bad day though I need to accept that my body needs rest. Prioritize my fatigue and don’t overdo it. I recommend bed, chocolate and some good movies. Rest. In. Comfort.
Morning or Mourning?
Mornings are one of my favorite and least favorite times of the day. I’m pretty useless at first while I vegetate and fart around on the internet or write on my blog, prepare my kid breakfast and set up entertainment for him so he’s occupied till I fight for a bit more energy by early afternoon or late morning. I can force myself to do some things in the morning if I have an appointment somewhere but I’m pretty much always late and take forever to get ready because I have to stop and rest periodically or it can take me a bit to get going.
I get tired from just putting on my makeup or having a shower. If I have nothing to do that day I will relax and slowly tidy my home, watch my son, write, go to the gym or do errands. Compared to what I could do before rheumatoid arthritis though, it’s minimal. Before arthritis my mornings involved waking up at 6 a.m., showering, doing my hair and makeup, getting my son ready for daycare, dropping him off and heading from Burnaby to Kitsilano on transit for over an hour where I would work a full eight hours Tuesday to Saturday as an esthetician. I was appreciated for my speed and strong massage, something I couldn’t do today only a few years later. I miss my old job. I don’t want to be on disability.
So many doctor appointments. Simple appointments are sometimes all I can handle per week. I see at least one doctor or health care practitioner every week. A little depressing when I realize that’s the most I do in a week most weeks.
Good Afternoon or Good Night?
Usually by mid-day, between the hours of 11-3 p.m., I get a slight boost of energy and begin cleaning my home if I am sticking around here. If I am having an OK day I might do some light errands or walk around the mall with my son. Typically I can only handle a few hours out. I find the constant natural “mom worry” uses up some of my spoons during the day if I have my son. I can relax and get a lot more done without him around. I always look forward to a moment where I can shut that off and truly relax, granted I don’t have a million other things piling up to do because I struggle to get the simplest tasks done now. However, I miss him and the guilt of using up my spoons on everything I must do is a constant weight on my shoulder.
On a bad day in the afternoon I need a nap and I hopefully can carry on with the rest of my day after a rest. On those really bad days, nope. Not happening. Before arthritis I obviously had more energy and would take my son on more adventures by myself. I was able to play with him and run after him without worrying about pain or fatigue. I was a lot more active and could handle going out, errands, work and a child all in the same day or week.
I am pretty much an old lady in the evening. I will make a simple dinner and relax with my child and fall asleep usually no later than 9 or 10 p.m. I don’t do much else but relax in the evenings. By my child’s bedtime of 8:30 p.m., I am anxious to get him to sleep because Mommy is ready for bed herself. The energy of the chronically ill does not match that of a toddler. Before arthritis I was kind of a party girl. I wore high heels, I danced all the time. I loved going to metal concerts or goth/rockabilly clubs to dance. I could drink. I could dance the night away.
Going Out and Being Social
Before arthritis I was a social butterfly. Being tied to staying at home wasn’t an option for me. I had many friends and all day long at work I spoke to coworkers or clients. Now basic communication with a small handful of people can be tiring for me. Sleep is typically a struggle for me in a number of ways. I can fall asleep fairly easily and early once all my spoons are used up, but I wake up periodically throughout the night or if I wake up I am just up. I’m usually in pain at this point from laying down for a few hours. I often toss and turn, in and out of sleep before I eventually just say forget it and get up to start my day.
Lack of a good night’s sleep can lead to me feeling sluggish and fatigued even worse throughout the day and is considered a big trigger for RA. By the end of the day I find myself barely able function past 9 p.m., but that pesky painsomnia kicks in during the early hours of the morning a few times a week. I typically sleep in two batches or I am awake at the ungodly hour of 4 or 5 a.m., which is kind of awkward when you aren’t getting up that early for work.
There’s no doubt that being a parent is difficult, but being a parent when your health is on your mind all the time can be a daunting task. I have never been the most patient person in my life but with my son I have been. Before I even imagined myself as a mother I would say I don’t have the patience for children. Now, I don’t know what it is – I reckon it’s Mother’s Love, or maybe my kiddo really is awesome, or it’s possibly the medicinal marijuana, but I can’t lose my patience with him. He has been my rock and kept me fighting this terrifying battle. I don’t mind if he uses up all my spoons.
Triggers and Spoon Killers
I can wake up one morning feeling somewhat OK, energetic and lively with possibly mild pain. I can overdo it though and I still only have so many spoons on those days. Gauging how much energy I actually do have in a day is difficult. Bad days/turn-bad days I find are usually accompanied by my infusions, medication dates, stressful events, emotions or a very busy time when I have to overextend myself. My disease is flaky; I am not. Every morning I write a list of things I want to accomplish that day. It could be little things like shower, figure out how to do something like fill out a form, even something basic, but due to how much fatigue and cognitive dysfunction I have, I can’t figure stuff out or I know the mental energy to do so is, at the moment, too much for me. I can’t always pinpoint these days. I can’t always finish my lists. Sometimes it takes me no time to do something and sometimes it can take me months.
Triggers have been difficult to explain to healthy people so I created a list of normal everyday activities that take up my spoons and/or hurt. I look back onto the years where I lived before arthritis and what I was able to do every day without much difficulty, other than I probably just didn’t feel like going to work or doing the chore because it wasn’t fun, not because it hurt or made me feel worse.
– Showering and getting ready on a daily basis, including doing my hair and my makeup
– Walking across the street on a really bad day, or a few blocks to the train station
– A flight of stairs
Cooking and clean-up
– Chopping vegetables, lifting a heavy pot
– Daily errands like doctor appointments, grocery shopping or carrying bags
– Whatever requires physical and mental energy tires me out. Math? Hah, next to impossible because of my cognitive dysfunction a.k.a. brain fog
All simple things I never struggled with before arthritis.
You can see my frustration with fatigue when I start doing something and then leave it unfinished or say I will do something then forget to or say I can’t. Realizing I maybe have less spoons than I thought that day or I suddenly just don’t feel well.
I got no more spoons. And not without extreme guilt. It’s when I am really tired, which cycles throughout the day, and I can now pinpoint when and what will bring it on. Then, I do two things: Relax on the couch watching movies or binge-watching TV shows and eating healthy snacks. Really Netflix and chill.
The Emotional Weight of Living With Severe Illness Is a Battle on Its Own
If anyone ever expects someone with chronic illness to “just get over it,” they really should try walking in our shoes on a bad day and remember we have to live with that for the rest of our lives. That’s a lot to take in. Some days I just need to say “fuck it,” cry and break down because the stress or the pain is too much. Sometimes the fatigue is too much or some days I just miss being healthy. You can’t be the strongest you without first being at your weakest points.
But now my life changes and I remain hopeful for better days. Those days when I don’t feel well enough to leave the house are put to the test as my son enters kindergarten. Stay tuned…
Follow this journey on Chronic Eileen.
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