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Flares and bad days

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When you have lupus, you have periods of disease remission and flares. Remission may seem like the disease is gone, but the reality is it never goes away; it’s just quiet. A lupus flare is a period of heightened disease activity which for me, ranges from mild to moderate and to severe. I’ve had both remission and flares all in the same day. Lupus turns on me that fast. After being diagnosed, I’ve become very aware of how I am feeling and what my body is telling me. Many times I can tell when I’m about to get a flare, but there are those times it just sneaks up on me. This is why lupus is so unpredictable.

I can tell a flare is coming when I start to feel very lethargic, beyond the normal amount. This gets tricky because chronic fatigue is a big part of lupus. At this point, I consider this a mild flare and I will get extra sleep for a couple of nights or take more rests throughout the day. If I were to keep pushing myself, I’d end up in a moderate flare.

Moderate flares are much more complex and stop me dead in my tracks. These can last from two days to two weeks. I find myself curled up in bed with what feels like the flu. My joints ache, I have zero energy, and I have no appetite. My temperature is high so I spend the day resting with ice packs all over my body. I am exhausted because my body is using all of its energy to fight itself. It hurts to sleep and it hurts to sit. I am completely uncomfortable and in horrible pain. I take many extra medications and I sleep an enormous amount during a flare. My husband, Patrick, takes care of everything that I could normally do for myself. Time, rest, and extra medication are what help me the most out of a flare.

I have had severe flares for which I’ve ended up in the hospital. These are scary because if I can’t stop the mild or moderate flares, it becomes more involved with my organs. I’ve had many organs affected by a severe flare and I have been admitted for days and weeks at a time. When my body is weakened and my immune system is under attack, I am very susceptible to infection. A flare can snowball quickly out of control which is the number one cause of death among lupus patients. Physically, when I’m in the midst of a flare, I find myself drained but it’s also the emotional toll that consumes me.

I’m usually a very positive person and I try not to allow the pain to cloud my outlook but on those flare days I feel defeated, sad, and withdrawn. I tend to withdraw from the world because I’m in too much pain to think clearly. This is one of the darkest aspects of chronic illness. A lupus flare affects me just as much emotionally as it does physically. I have no idea how long a flare will last so it makes planning or following through with plans, very difficult. I’m saddened when I have to cancel an event I’ve been looking forward to because of a flare. As you may have guessed, these erratic flares make life difficult, but it’s in those times I’m grateful for the understanding and support of my family and friends who help me through.

I wake up daily with one goal in particular: to prevent flares by managing this disease the very best I can. Often with lupus, it can strike without warning despite my best efforts. I’m at peace with the fact that as long as I have lupus I’m going to be dealing with flares. I forge ahead and try and stay positive. I cling to a saying we say at church: “before every Easter Sunday, there’s a Good Friday,” meaning, there is darkness before dawn. This flare shall pass.

We all have different ways a flare affects us. One bit of advice I can pass along is to listen to your body, respect its limitations and adopt realistic ideas about what you can and can’t do. I wish you all the best of health and flare-free days.


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