Have you ever wondered what life with lupus might be like? As one of the 1.5 million people in the U.S. and about five million people worldwide with lupus, I want to share a day in my life with you.
In case you aren’t familiar with lupus, I’ll give you a brief introduction. Lupus is an autoimmune disease that makes your body self-destruct. Normal, healthy people have an immune system that works properly and kicks into gear when there is something foreign and unwanted in the body. It helps clear infections and get normal people back to their healthy lives. Life with lupus is quite different; your immune system thinks that things like your heart and kidneys are foreign invaders and will attack them. This can cause organ damage or even organ failure. (To be clear, there are different kinds of lupus, and I’m talking about systemic lupus erythematosus. People with discoid lupus usually only have skin involvement.)
Lupus can attack anything in your body. Common culprits are the heart, lungs, and/or kidneys, but I do literally mean anything. It can attack your blood vessels, your brain – it even attacked one woman’s spinal cord and left her paralyzed from the waist down. So please keep in mind that people with lupus tend to vary widely in their disease activity and severity. I can only share with you my personal experience, and I certainly don’t intend to represent all people with lupus.
A Day in the Life with Lupus.
I usually wake up between 7 and 8am when my husband leaves for work. Lately I’ve been fortunate to actually sleep through the night pretty decently. Sometimes I can’t sleep because I’m in too much pain – something the chronic illness community refers to as “painsomnia”. But on this day I wake up around 7:50am as my husband is running a bit late for work.
The very first thing I do is take my heartburn medication, since I’m supposed to take it 30 minutes to an hour before I eat.
I’ve had heartburn for years but recently it’s gotten unbearable. I’m afraid I’ve torn up my stomach from taking so many NSAIDS (nonsteroidal anti-inflammatory drugs) in attempts to control my pain and inflammation. My doctors and I are hoping that just one round of prevacid (lansoprazole) can help my stomach recover, because we aren’t crazy about adding yet another drug to my regimen, plus it’s expensive and not covered by insurance.
I then rest in bed for 20-30 minutes. Most of my joints are painful, stiff, and sometimes swollen in the morning. My fingers, wrists, elbows, knees, and ankles are the usual offenders, with my hips chiming in occasionally. I also have a great deal of chronic pain in the joints and muscles of my neck and shoulders. Today I woke up with a pain level of about four.
Before I get out of bed I put in my prescription eye drops for my chronic dry eye. It burns a bit so I wait another five minutes or so with my eyes closed before getting out of bed.
I have evaporative dry eye and chronic eye inflammation, which is probably from my lupus but it can be hard to know that for sure. My eye doctor prescribed xiidra, which is similar to restasis for those of you familiar with dry eye medications. Fortunately I was able to get a coupon card for it, which means I only pay $10 a month. That’s a big deal because it costs anywhere from $400-600 for a month’s supply and sometimes (a lot of times) insurance companies won’t pay for it.
I get out of bed and head into the bathroom to check for rashes. This is a very common part of life with lupus because rashes are a sign of disease activity and it helps me to predict what kind of day I’m going to have. Today I have a moderate malar rash (also called a butterfly rash) across my face. You would probably just think I’m flushed if you didn’t know I had lupus (or sunburnt if my rash was severe). I don’t have a rash on my chest or my neck though – so it will probably be a decent day.
It’s time for my third medication of the day – a steroid cream that I use for painful inflammation in a… sensitive region.
I’ve been dealing with this specific pain for about six months and the doctors don’t know what is wrong (other than it’s probably inflammation from lupus). So I use the cream to control my symptoms and keep myself from going absolutely mad.
I gather the rest of my morning medications and take them into the living room where I’ll eat breakfast.
The big yellowish clear pill is fish oil. There was a study in 2008 where lupus patients who took three grams of fish oil daily saw a reduction in disease activity. My eye doctor also told me it could help with my dry eye, so I finally shelled out the money for a high quality fish oil supplement. (Being chronically ill in the USA is unbelievably expensive.)
The white pill that has text on it is plaquenil (hydroxychloroquine) – an anti-malarial pill that is often the first medication they put you on after a lupus diagnosis. It did make a big difference in my joint pain but it didn’t bring down my inflammation levels (which are a sign of disease activity). It is relatively low risk compared to other lupus medications, except that it can cause you to go blind if you take it for a long time (like decades) at a high dosage. I’ve recently started to have blurry vision issues and I may stop taking it next year after I have my annual eye exam that checks for damage from plaquenil.
The circular light yellow pill is imuran (azathioprine); it’s an immunosuppressive medication that is frequently used for kidney transplant patients. My rheumatologist decided to add the imuran after I was on plaquenil for six months but still so sick from lupus that I was almost completely non-functional. He chose imuran because (and these are his exact words), “it’s not as awful as methotrexate”. Many people with lupus take immunosuppressants of varying strength. Methotrexate is a common one and you may have heard of it because it’s also a chemotherapy drug. There are several immunosuppressant options for people with lupus and some of them are geared specifically towards people with kidney involvement (called lupus nephritis). If you google “imuran” and read about it you’ll find that it’s kind of terrifying. It’s a carcinogen, it can cause lymphoma, it can make your hair fall out, it makes you vulnerable to infections, and generally isn’t something you would take unless you are rather desperate. And life with lupus has made me quite desperate at times. Fortunately, I’ve responded well to imuran so far. I’ve been on it for almost six months and it has helped me to have some semblance of a normal life again. My inflammation levels are going down and my pain and fatigue have been decreasing in severity. I’m on a relatively low dose of 100 mg a day (just over 1 mg/kg) so that may be why I don’t suffer from some of the common (but appalling) side effects.
The tiny pill that’s been cut in half is baby aspirin. I’m currently four and a half months into a high risk lupus pregnancy and I’m taking about 120 mg of baby aspirin daily to reduce my risk for preeclampsia – a dangerous pregnancy complication. Historically women with lupus were told that they should not even think about having children and that attitude has only slightly improved in recent years. As long as your lupus is under control it is generally considered okay to conceive (mine wasn’t fully under control but this wasn’t a planned pregnancy). I have a team of high risk OBs and a maternal fetal medicine specialist that monitor me closely and work with my rheumatologist to make sure that the baby and I make it safely to the finish line.
Next on the agenda is waking up my budgie, Koopa. On my bad days he is often the only reason that I get out of bed before noon.
I transfer Koopa from his sleeping cage to his daytime cage and lock him up because it’s the only way I can have my coffee in peace. Koopa thinks that all the cups and food items in the house belong to him so he’s generally in his cage during meal times. But otherwise he’s out all day and we do pretty much everything together – he’s an incredible emotional support animal.
For breakfast Koopa has a bowl of applesauce and I have a smoothie with coffee, a big glass of water, and my pills.
Oh, and yogurt. One of my doctors wants me to try taking a probiotic supplement but I can’t afford to purchase the quality ones on top of all my other healthcare expenses so I am trying probiotic yogurt instead.
It’s 8:40am when I’m finally settled at the couch. Today is a pretty good day, as far as life with lupus goes, and moving around to prepare breakfast brought my pain came down to a two. Still, I start every morning by using a heating pad for my shoulders to help them relax since they typically hurt every moment of every day. However, the heat bothers my dry eye so I insulate the heating pad with a cardigan and a blanket. I end up looking pretty ridiculous.
On good days like today I typically sit with my heating pad for an hour while I do some work on my computer. I do some freelance writing, some blogging, and also some chores like paying bills, tracking insurance expenses, ordering supplies online, etc.
Before I got sick I worked in a lab as an analyst testing the drinking water for the city I live in, and I loved my job. But I can’t work full-time with lupus – at least not right now. Perhaps if my lupus went into remission I could consider it but at the moment I’m far too sick to do anything that requires me to be reliable on a daily or even weekly basis. I have only committed to writing one freelance article a month because in that time frame I can just barely guarantee I’ll have two or three good days without prior commitments that I can spend writing it. Furthermore, being chronically ill is so time consuming at it could be – at the least – a part time job with all my appointments, trips to the pharmacy, time spent on the phone, prepping medications, tracking lab results, etc.
I’ve finished with my hour of computer work at 9:50am, which is usually the time I would get ready to leave for a doctor’s appointment if I had one. To give you an idea of how often that is, I’ve had 61 medical office visits so far this year and have one more scheduled before the end of the year. (I’ve also had one visit to urgent care and one outpatient procedure.) I like to schedule my doctors’ appointments around 10:30 or 11 in the morning so that I can get up slowly and give my joints time to loosen up before I have to drive. This also helps me get back home before I start to crash from either fatigue or pain in the afternoon.
Since I have the day off from appointments it’s time for me to turn on music and do my physical therapy. I use a foam roller, an exercise ball, a neck pillow, two weights, and a tension band that I forgot to include in the photo.
It takes me about 30 minutes to do my physical therapy properly – that is if I don’t get tired and end up taking several breaks. I’ve been doing this therapy routine almost daily since May and it’s one of the few things that keeps my neck and shoulder pain from becoming excruciating.
Then it’s time to pick a chore to do. I try to do at least one or two household chores each morning and another one or two in the afternoon. Any more than that and I risk overdoing it and having to spend the next day in bed. I’m a bit limited in what I can do as far as housework, anyway. Usually my hands hurt too much to do things that require putting pressure on them (like scrubbing a toilet) and my neck and shoulder pain also restricts my ability to do physical chores. I pretty much have a set list of chores that I know I can do on my good days. My husband ends up doing about 75% of the housework (or 100% during a flare) and he really has a good attitude about it. Before my life with lupus began we would split the housework more evenly, usually 50/50 between the two of us. Lately my in-laws have also been coming over and helping with chores too, which has been a great help. Today I decide to tackle the kitchen because it’s gotten away from me this week. It’s rather common for our kitchen to be a disaster, of course. Dirty kitchens are definitely a part of life with lupus.
Ah, that’s better.
It’s 11am and I get resettled at my computer with my heating pad to attempt a second hour of work. It’s unusual for me to make it through the whole hour; pain, fatigue, or brain fog (lupus can cause a lot of cognitive impairments) usually stops me halfway through. I make it through the whole hour this time, though. Koopa helps.
At 12:30pm I eat lunch with another round of pills. This time it’s my second dose of imuran and baby aspirin, plus a multivitamin.
I’m not feeling great at this point so I watch Netflix on the TV. I’ve spent so much time feeling sick this year that I’ve exhausted my Netflix TV reserves, so please feel free to chime in if you have any recommendations (I also have Amazon Prime Video). Before long I’m feeling absolutely miserable so I move to my bedroom and watch TV on my phone.
My husband and I made this ugly but functional phone holder for the times when I am only able to lie on my back because of the pain in my neck and shoulders.
It’s 2pm now, which is usually the time I need to take my first round of pain meds if I’m going to need them. My joint pain is getting worse and I have a headache but it’s not quite bad enough to take medicine yet. Most doctors will tell you that the best pain management strategy is to treat the pain as soon as it starts – and that’s true. However, if I did that I would be taking my pain meds 24/7, building up a tolerance to them, and then needing stronger ones. Since my pain is teetering on the edge of needing medication I decide to take an Epsom salt bath. I take a bath to help with pain usually five days a week.
After my bath I take a short but steamy shower in an attempt to get some moisture into my dry eyes. The whole bathing process takes about an hour. For most people a bath would be relaxing or even rejuvenating, and it is for me to an extent, but I actually need to recover from taking a bath. It takes a surprising amount of energy to bathe (especially if I’ve seen to any personal hygiene while I’m in there) and I have very limited energy reserves, so afterwards I get back in bed to rest.
Unfortunately, my pain and headache get a lot worse over the next hour, which means it’s time for pain medication. I can take one extra strength Tylenol (because I get rebound headaches if I take more than that) and/or one tramadol each day (I was allowed to take three tramadol a day before my pregnancy). Tramadol (ultram) is an opioid pain medication that helps with my pain but doesn’t usually take it away completely. It usually just makes my pain come down to a tolerable level. I decide to start with a Tylenol since I have a headache – I can always add the tramadol later if I need to.
Here’s a photo I took earlier this year using tramadol to spell out ‘pain’.
I decide to get a snack and continue watching TV on the couch but I’m really having a hard time concentrating enough just to gather my water, food, blankets, and the TV remote. I’m pretty tired. I used to read a lot and watch very little TV, but holding a book can be difficult for me and it takes more concentration to read than to just watch TV or a movie. I would rather read if I could manage it, of course.
After an hour I start to feel better (thank goodness) so I attempt my second round of chores. Sometimes getting up and moving around helps and other times it makes things worse, I just have to pay attention to my body and try different things on different days. I feel okay after starting the laundry and cleaning off the counter, so I do a bit more work on the computer.
I wrap things up shortly before my husband gets home at 6pm. My joint and muscle pain start getting worse again and I get hit by another wave of fatigue. He takes over the laundry and pieces a meal together from whatever he can find in the fridge, which isn’t much. Grocery shopping and cooking are physically demanding chores for me and it’s hard to keep food stocked. My mother in law brings food over periodically and it really helps. I end up having cereal and fruit for dinner, plus my second dose of plaquenil. Koopa has corn for dinner.
Originally we had planned to go out and see Christmas lights tonight, but it’s raining and I’m definitely not feeling up to going out anyway. I feel a mixture of disappointment and relief, which is unfortunately a very common occurrence in my life with lupus. So my husband decides to work on the computer for a while. It’s normal for him to spend a big chunk of each evening working, either doing chores or other various odds and ends that I haven’t been able to get to (or that I started and then got tired and couldn’t complete). This is my view as I’m resting on the couch.
We keep it pretty dark in the evening because our overhead lights are very bright and I have light sensitivity. I also need it fairly quiet in the evenings as I’m sensitive to sounds as well.
We end up watching a movie together. Instead of cuddling on the couch, however, I lie down in the most comfortable position I can find and my husband sits next to me on the floor. My left knee started hurting for no apparent reason to the point where I almost needed help to walk to the bathroom. I did stretches throughout the movie to keep my various pains at bay. I kept having to close my eyes during the movie because they were so dry. Even something as simple as watching a movie can feel like work when lupus makes me feel sick.
The move ends a little after 9pm and I’m relieved that it’s almost time for bed. I can’t go to sleep yet or I’ll wake up too early in the morning. I’m thinking about taking my daily tramadol because of the pain. So my husband breaks out one of his techniques for when I’m tired and in pain – birds. I am a bird fanatic and birds pretty much never fail to make me happy. Koopa is already in bed for the night so we look at cute bird pictures and videos and I laugh and laugh and have such a good time and feel so much better afterwards. Endorphins are very powerful and being in a good mood can make pain a lot easier to cope with.
At this point it’s almost 10pm so we get ready for bed. I take my blood pressure medication.
I’ve had chronic hypertension for three years. It may not or may not be from my lupus. My primary doctor thinks that my blood pressure is high because being in pain is stressful and it makes me anxious. She’s probably right. At least it’s well managed for now.
I also lay out other medications: my prevacid for the morning, a Tylenol just in case, one xiidra eye drop container for tonight, and another xiidra for in the morning. I also put my IcyHot roll-on within arms reach in case I wake up in pain. The xiidra liquid tends to drip onto my nightstand and I try to clean it up periodically but I was too tired to clean it for this photo.
My husband gives me a nightly shoulder and neck massage to ease the pain and tension; it’s short tonight because he’s tired. I’m fortunate that tonight I’m able to drift off to sleep pretty easily.
And there you have my entire day. Even though I only got two hours of computer work and three chores accomplished, it was actually a pretty good day. I was able to get out of bed for most of it and my pain didn’t become excruciating. I would say maybe half my days this year were like this one. Few days were better and many were much, much worse.
Lupus has changed my life completely. On my bad days I do feel like it’s ruined my life – despite the fact that it has made my life better in some ways. Most of the time I am just struggling to do the best I can with the physical and mental resources that lupus deigns to grant me with on any given day. I hope you enjoyed this post and learned a bit more about life with lupus.
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