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L is for Living, Learning, and Lupus

People don't understand fatigue as a symptom of an illness.

It’s lazy, it’s a killjoy, and it is a distinct lack of will.

I was diagnosed with Systematic Lupus Erythematosus known simply as Lupus in late 2016. I had unknowingly experienced what is called a flare and was subsequently diagnosed with Connective Tissue Disease, then SLE.

Let me give you some quick facts about Lupus.

Lupus is an autoimmune disease in which the body attacks itself because it cannot tell the difference between its cells and foreign cells. Lupus can attack any organ in the body, including kidneys, joints, and skin.

Lupus affects different people in different ways and to vastly varying degrees.

For me, it affects my joints, particularly my knees. I sometimes have full-body joint aches and fatigue when I don't rest. Nothing crazy. I thank God.

It is hard to tell someone I can’t do a particular task/activity because of fatigue. It sounds bonkers. Before diagnosis, I thought I was just no fun. I could not keep up with a full day of activities. It never occurred to me that it was medical/physical. Add to this that I am introverted and my social battery, much like my phone battery, hurdles towards 0%.

Another challenging aspect of this illness, for me, is wanting the space to express my feelings or rant. But talking to people about an illness that is not in your face can be viewed as complaining for no reason.

I have not solved how to express my feelings in my general relationships yet (will take advice). In the meantime, I have joined and volunteered at the Lupus Foundation of Jamaica which provides space to Lupus warriors.

Living & Learning

Though I do not have any dire symptoms, I still have to adjust my lifestyle for it. Here are five things that help me live fully.

I give myself grace

There will be periods where my productivity will go to sh*t. This was upsetting as someone who uses productivity as an I am doing-something-with-my-life marker.

I had to learn to protect myself by not beating myself up about it. I had to accept that this period will just be blocked as downtime.

It's tough out there, don't add unnecessary stress to yourself.

I take advantage of the good times

After a good night's rest, I have a good period of productivity at 5 am for a few hours. I use this time to mostly do chores, hobbies, studies, etc. And this sometimes propels me to complete other tasks. I make the day's to-do list. I don’t assign times but I will assign priority in my mind. Then knock off what I can throughout the day.

Maximize your time.

I don’t try to do everything in one day.

Get to know your body. Get to know your limits. Do not continuously go beyond your limits.

I (try to) eat well and exercise.

Admittedly, this is my weakest area. With exercise being the weakest link.

Again, get to know your body, it will tell you the food it doesn't like or the quantity of a particular food it doesn’t like.

As much as eating well and exercising is a pain in the bum, it has to be done.

The good news is that it does not need to be extreme. I ended up laid up in bed, in the bathroom and at the doctor's office after an intense session at the gym. -100 out of 10, do not recommend. So no need for intense cardio or dieting. You just have to be consistent and deliberate.

Finally, I sleep!

Lack of sleep, overuse of my knees/ankles, and stress spell disaster for me.

So I had to be intentional about sleep. Sleep is the time your body repairs itself. Be intentional. Thank me later.

As you can tell by now, the recurring theme is ‘Learn your body’. Put into practice what you have learned, be flexible, and be balanced.

If you are a fellow Lupus warrior or have any illness in which fatigue is a feature, please let me know your experiences. See you next post.

Link to Lupus Foundation of Jamaica:



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