My Life with Lupus | Nearly 5 Years Since Diagnosis

I’ve read many blog posts and articles on what it’s like to live with Lupus, but I’ve never truly been able to relate to any of those reads. People have said that it’s like being in constant pain, feeling pins and needles all over all the time, or constantly feeling tired… but that is not my reality.

It has been four and a half years since I was diagnosed with Systemic Lupus Erythematosus (SLE) and wow, time really does fly. That’s almost equivalent to the number of years I spent in High School! (Trust me; those years took an eternity to go by.) But within this seemingly short space of time, here is what I can say about my life with Lupus. First of all, I’d like to make it clear that what everyone experiences is different. Everyone believes that people living with Lupus are in constant pain or always have swollen feet or must stay away from the sun because they’re photosensitive. Again, these things are the reality for only some of us.

Is it painful?

Yes. Ever so often I’ll experience pain in my joints (knees & fingers) and muscle pain. It may last for a few days or for only one day. I’ve noticed that the pain in my hands and fingers is more frequent when it is cold, but that does not mean that I’m always in pain when temperatures are lower than normal. My muscle pain comes on almost spontaneously. Depending on its extent, I may only notice it when I’m in the shower, gently passing my hands over parts of my body.  There is nothing that I take for this type of pain. It usually subsides on its own within a few days. At other times, the muscle pain is deep. It’s usually brought on by a lot of built up tension from poor posture or exercise. Massages help with that, but the pain will fade in stages. I’d also like to throw it out there that I absolutely hate taking pain killers simply because I’d be adding more drugs to my already lengthy list.

What about body sensitivity?

My body has become 10 times more sensitive to my external environment since my diagnosis.  Currently, I’m the friend who goes to the movie theater in a sweatshirt and holds an extra jacket or sweater just in case. There are times when I feel so cold that I still shiver under both sweaters. If under these conditions for prolonged periods it will eventually become painful. I’ve had to leave theater rooms in an attempt to warm up my body, and return when it felt okay to. At first, I was embarrassed by it. In the moments when I was the only person sweating in the room or when I was the only person shivering from the cold, I tried my hardest not to make a fuss because I didn’t want to draw any attention to myself. I knew that what I was experiencing was not normal. I eventually got over it; I have very understanding friends and family. But I have also learned that when my feet are warm, the rest of my body is likely to be okay. So now, I wear closed shoes or sneakers to the movie theater all the time, and sometimes I wear socks to sleep. As for the heat, when you’re hot, you’re just hot. 

Are you photosensitive?

I’ve learned from research that a certain percentage of lupus patients are photosensitive. This means that direct exposure to sunlight or UV light can have negative effects on their bodies. I know of some women who have nasty flares after spending lengthy periods in the sun. I know of some who testify that the exposure drains them of their energy. I take every precaution advised by my doctors- I use sunscreen of spf 50 or greater, I walk with a  sun hat or umbrella when going to the beach and try my best to be covered up when I know I’m going to be in the sun for a while. However, I think it’s safe to say that apart from an occasional tan or sun burn, I’ve not experienced anything that would make me believe that I am photosensitive. Still, I take the necessary precautions just in case.

Do you ever feel fatigued?

This is one of my greatest challenges with living with Lupus; dealing with fatigue. There are days when my body will grow so tired that all I can do is sleep or crave sleep. On some days I go to work, get through my hours and come home to jump into bed. Sometimes, I take a nap at work because otherwise, I’d not be able to function for the remainder of the day.  This is not my everyday reality, but on the days that it is, it really sucks. Imagine only having the energy to eat something and crawl back into bed. Imagine fighting with yourself because you have work piled up and deadlines to meet, but your body is literally screaming, “Not today”.

It’s not a great feeling. I’m thankful that those days are few and sometimes far in between, but to this day, I still cannot manage them very well. I have learned and am still learning that I must respect my body’s limits and provide it with the things it needs- including an entire day of rest from time to time. To manage, I try exercising regularly. This usually improves the flow of oxygen around the body and to the brain. When the brain is receiving more oxygen, you become more alert.

I’ve also started paying closer attention to what I eat. I couldn’t continue eating what I wanted when I wanted just because it tasted good or because I was craving it. Consequently, I now have days / periods when I restrict meat, dairy, and gluten- simply because studies have shown that eliminating these products could potentially send my Lupus into remission. However, I’m really not interested in becoming vegetarian or vegan, so I work with my restrictions. I think that the restrictions have also helped to improve my energy levels. To add to that, I’ve introduced healthier snack options to my diet, like fruits, yogurt, granola and nuts. I still have to eat these in proportion, but they’re better options for satisfying a sugar craving than a biscuit or ice cream is. I’ll still get my sugar, along with a host of vitamins, minerals and pro-biotics, so it’s a win-win situation.

How do you know when something is wrong?

When you’re living with any kind of illness, you must be so in tune with your body that you can pick up on the slightest of changes. That can be the difference between you simply visiting your doctor or ending up on a hospital ward or in the ICU. It took me a while to get to where I am now. I’ve made so many mistakes within the last 4 years, but I’ve learned a tremendous amount of information about my body through them.

There are lymph nodes behind my left and right ears. These glands tend to swell and shrink constantly. They’ve never really remained shrunken for very long periods since my diagnosis (maybe except when I was on the steroids), but I use them to have a general idea of what is going on inside me. 

On the days when they are swollen so high that they’re like tiny mountains, I can almost guarantee that one or a combination of two or more of the following will occur:

  • My feet will swell.
  • I’ll experience a headache that lasts anywhere from an hour to all day.
  • I’ll feel very tired and sluggish.

I assume that since lymph glands usually swell when the body is fighting an infection, it’s either that my body is attacking some kind of pathogen or my Lupus has become slightly more active. On days like this, I try my best to be patient with my body. I move slowly, avoid stressful situations, reduce my water intake if my feet are swollen, keep my feet elevated whenever I can, rest whenever I do have the chance, and pardon myself for all the things that I had planned for the day but would be unable to accomplish.

Is it easy to follow your treatment regime?

If I have to be completely honest, in the first year after my diagnosis, I was on point with the whole medication thing. I took them on time every day. But over time it became harder to manage. Maybe I became comfortable. Maybe I got busier and neglected myself as I took on work more (and yes, this has happened). But whatever the reason, eventually, taking medication regularly can become difficult. It was not until my last doctor’s appointment in January when my doctor stated that my test results implied that there might be an increase in the Lupus’ activity that I told myself it’s time to get my act together. 

Now, I have 2 pill boxes. I fill them up at end of the week and keep one in my medicine kit at home and the other in my work bag. I’ve also set alarms to remind me to take my medication each day. The truth is, I do forget sometimes. I do need reminders. And if I forget to take them at home because I’m rushing, I can take them at work. I do this because at some point I had to remind myself that to have a major flare now, or any time soon would be a major setback. I could never forgive myself for putting my body through one, if it could be avoided. My last flare was in 2016. No combination of works can accurately describe how painful a major flare really is for me (and my family and close friends). I won’t get into that, but I have enough pictures to remind me of where I DO NOT want to be again. The memories, though not my fondest are really good sources of motivation. They show me how far I’ve come and all the reasons why I can’t allow myself to go back to where I was .

Any last words?

Some parts of this journey include things like discrimination. So far, I’ve only fell victim to that on one occasion, when a co-worker decided that I was unfit for a particular role because I “have lupus and will call in sick sometimes.” I suppose the individual had forgotten that healthy people will call in sick sometimes too, because with or without a pre-existing condition, everyone falls ill. On the other hand, I know of women who struggle to find jobs because of their illness. They usually have more chronic/active forms of Lupus, and I can only imagine what they go through each day. There is so much more that I could write about but I’d like to stop here for now.

To end, I have good days and bad days. There isn’t constant pain, but there is pain. There isn’t constant fatigue, but there is fatigue. My lupus story is and will always be different from that of many others and I’m still learning more and more about myself each day. And this is probably the most that I’ve ever spoken about living with Lupus.

4 Replies to “My Life with Lupus | Nearly 5 Years Since Diagnosis”

  1. This post was very informative and personal. First, thank you for sharing. Second, I’ve heard of Lupus but I never really understood it. This did a great job of making it understandable. Also, this made me think of the spoon theory… (Look into it if you’ve never heard of it!)

  2. Its been a journey but im happy to know that you are better managing this disease. Its not a life sentence and i know one day we will beat it. Keep fighting my lupie sister.
    Love you.

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