Neglecting My Baby Named Lupus
Lupus is a part of me, and like a baby, it’s something I need to nurture, pay attention to. But at times, I neglect my lupus so much that someone could call the Administration for Children’s Services on me. I never asked for this cranky brat that changed my life, expects me to plan around it, makes me go to bed early, stay up late, cancel dates, stop drinking, sit still, and pacify it with meds. I’m expected to keep my lupus close to my chest because at any point in time it can wake and scream into my joints and bones.
I think anyone with a chronic illness has seasons where they want to pretend it doesn’t exist. We watch our friends giggle and chat during a day at the mall, not wanting to be the one to say that our body is ready to go. We let the adrenaline take over as we ignore the late hour and keep dancing. Coupled with the dehydration from your friend’s birthday shots, we pretend we won’t feel it the next day … and probably for the next two days. We forget pillboxes on the counter, reschedule doctor’s appointments when they conflict with work, and miss infusions.
We wish our lupus fog would help us forget we have lupus instead of forgetting where we put our keys. This brat of a disease does quiet down sometimes. But as with real children, quiet can feel like it’s getting into something and that trouble is a-comin’.
Lupus can be so unpredictable. But honestly, sometimes it isn’t. We know our triggers and what we should do to keep it from acting up and showing out. But it seems easier to try living life like the young parent whose mom is always down to babysit. Drop lupus off and keep the party (or just the regular life) going. Sadly, it doesn’t work that way.
Our stints of disconnecting our lives from our illness, as if the two can’t work hand-in-hand, can put us at risk for severe flares and hospitalizations. Sure, we can have a couple of long nights and fun days. But pretending lupus doesn’t exist can cause it to bawl at your joints, keep you up at night, leave you drained during the day, and throw a tantrum so terrible that you’ll only desire to be in fetal position for weeks.
I empathize with wanting to hold on to the life you had when you were single and not paired with a chronic illness. But learning how to grow with it — hate it, but still live with it — will only benefit me in the long run. Neglecting lupus meant I was neglecting myself. It took a lot to be able to remember that lupus is something that forces me to listen to my body’s cries and nurture it (something we all need to do, with or without an illness).
I don’t feel guilty for needing to take breaks, power naps, or for saying no. I realized the parties I missed were the same as the last ones, and being sober made everyone else seem even more hilarious. Even though this brat called lupus continuously tries to mess up my good time, I still truly believe I can have a life filled with joy if I just paid it a little more attention.
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus
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Comments
MELANIE
I FEEL GUILTY ABOUT EVERYTHING. I NEED TO LEARN TO RELAX, BUT LIFE IS SO HECTIC AND IT IS HARD TO. THUS, MY BODY LET'S ME KNOW..
Jill Blackstone
Excellent metaphor and one I have not seen before. What a fine line it is to live with lupus, emphasis on LIVE. To live a life that seems fulfilling, productive, dare I even say fun... To live a life where you have something left over to give others after you've taken care of yourself. So yes it is like a child who needs attention, but it's also a child you can marvel at as you watch it evolve and you become better at juggling things. Watch any new mother struggle to do mountains of laundry, clean bottles, pump and freeze breast milk, read labels of baby food or make their own, worry about the plastic in the toys the baby is sucking, vacuum obsessively as the baby learns to crawl and pick up choking hazards... That's us as we get the diagnosis and have the limitations assigned to us. We are navigating an entirely different self. And yet over time, there are moments of frustration, despair, emotional and physical pain... but there is also a new, different life out there. You can find it. I did. It's not the same. But it's ok.
Randa Hakim
I wish I can say the same about life with SLE as you say here Jill!
It is so difficult to accept the limitations thatnobody sees or realizes but me ! I keep trying to pretend that yes I am to blame and it's me who just is too lazy or too negative when the reality is that it's not me but this invisble disease that stole my energy, my self confidence, my brilliant mind and I don't know what else ! Your words here are encouraging, so thank you, I am not the only one and yes, life is still possible even if not the same type of life as before the diagnosis
Valerie Medina
Randa, when you think about the "spiritual" nature of Lupus as a disease where the body attacks itself...its as if we are doing it to ourselves. its very easy to blame ourselves for the disease activity. Sometimes I think the reason we have the disease is to learn self care. Ive learned to enjoy the time in between my disease activity. Take care... your Lupie sister
Randa
Thank you Valerie for your kind reply. And yes, I should learn and train myself somehow, to use to the maximum the time between disease activity, the point is that I am kind of new to the diagnosis and sometimes I cannot really judge whether it's my mood swings and my lack of energy or is it the chronic fatigue and the signs of general inflammation lupus flares bring along. Now, I am decided to try, every day, to pull myself together and listen more to my body and learn to know and respect the signals it gives me. I am trying to put myself back to study, at the age of 56, so that I fight this brain fog and lack of concentration I've been suffering from for the last few years without knowing the reason behind it (until I was diagnosed)
Valerie Medina
Excellent and exactly how I have learned over the last 32 years. They don't call it "living with Lupus" for nothing ....LOL Thank you for your insight!