Last night I made salad for dinner. Tears blurred my sight and I lost bearing of the blade on my knife as I chopped romaine lettuce. I kept chopping and tossing various vegetables into a giant ceramic bowl. Everything in my body hurt – lupus pain was in rare form last tonight.
I let myself cry away as I risked slicing a finger, mistaking it for a carrot or tomato. Stubbornness wouldn’t permit me to rest while someone else made the salad. Controlling desire to execute the salad precisely how I wanted, wouldn’t allow anyone else to take over the task. I’ve lost so much control already. Determination fueled my salad agenda.
After I ate, I felt better. Was it a magical salad? Perhaps it was simply low blood sugar. More likely, my mood uplift was based on the closeness of time to when I would crawl into bed. Dreams promising to furlough the memories of how much everything hurt. Awakening is an instant reminder of pain. My eyes open and my neck screams, “turn over for the love of Pete, I’m dying in this position!” I turn over, but it rarely helps. I’m forced to get up. Pain demands I get out of bed. Pain makes me go lay down. Pain dictates, dominates, teases, tortures, depresses, and deflates my spirit. Lupus pain seems to multiply like gremlins in my body, infiltrating every cell of my existence.
On a “normal” day, my face is veiled with a smile. The smile misrepresents me. I always hurt. Energy to carry out “normal” tasks, is never even close to being enough. “Normal” are the everyday life and happenings of a healthy person, which is far from my reality. Most days, I feel like I’m losing my mind. Is it because of chronic disease, lupus pain, me, or perhaps all three?
Mental clarity and temporary absences of pain fleet in and out of my existence, teasing me with thoughts of living “normal”. I give “normal” a try and I pay a hefty price. I’m out of commission for days. Cruel. This disease is cruel.
I laid on my back on the carpet staring at the ceiling fan. Every joint in my spine told me they were there, and not in the nicest way. No choice but to get up off the floor. I sit and write. Everything still hurts. “Normal” doesn’t exist for me anymore. For now, lupus pain is me, even though I don’t want it to be.
Simply amazing. She captures exactly how I feel daily. Only a lupus sufferer can truly understand.
Wow I found a place where someone explained my daily battle explicitly the way I experience it. I was just recently diagnosed with Lupus and for years I thought maybe I was crazy with the struggle of always feeling sick one way or another but pushing through it raising three children as a single mother, some of that time while active duty in the Marine Corps. Thank you for sharing.
1st I apologize for not replying to your comment sooner. Thank you so much for sharing with me how you relate. It means so much to me. You’re not crazy! We all “push through” so much and you are amazing to handle everything in your life. Never give up fighting.
1st I apologize for not replying to your comment sooner. Thank you so much for your kind words. You’re not alone. We are a strong community of lupus warriors and yes, we just get it. We understand without words, the pain and struggles of living with lupus or any chronic illness. Thank you again and please take care of you.
Thank you for putting your life with lupus out there!! I can soooo relate to your life as mine is a carbon copy!! Surely wish for more help groups !!! I wish the medical community would hear me when I say I have lupus. It seems when I speak the word I get the ohhh response and then back to conventional medicine. I truly feel alone!!!
Hi Jayne,
I hear you and you’re not crazy!!! I apologize for not responding sooner. I’m so sorry you feel alone. This disease is so isolating. One place to check out for support and possibly even a local support group is the Lupus Foundation of America (lupus.org). They have great online resources and can direct you to a local chapter. My local chapter used to run monthly support groups, which were phenomenal! Unfortunately, my local chapter closed. Maybe you can start a support group in your area??? I know it’s so hard when you don’t feel well. I thank you again for reading my words and reaching out to me. It truly means so much to me.
I wonder how vitamin D might influence Lupus. A study in Sweden collected blood samples from those using the clinics, after some period of time they reviewed the samples and lab tests and found a strong link between those whose early samples showed deficiencies in Vitamin D and MS. The greater the deficiency, the worse level of MS. For some, especially early stages of MS, were eased by supplementing with Vitamin D. Interesting countries with high exposures to sunlight also have lower reports of MS. Norway with its short summer and less sun in winter was an exception. Further research showed that people in Norway that traditionally ate cod fish 3-4 times weekly had elevated D. Many ocean fish are high in Vitamin D. Being diabetic, I take 5,000II vitamin daily, 400 mg Vitamin B12, 100mg B6, 400mg Magnesium, 250mg Vitamin C, 50 mg Zinc and 400mg Hydroxychloroquine and 200mg COQ 10. Last two antiinflammatory. I found I and my brother have Factor 5 Leiden gene, creating blood clots. Mine was acute saddle cor pulmonary embolism, his was both lungs filled. While he tested neg for Lupus, he does have Lupus blood. I’m waiting on final test results to see if I have it. Rheumatoid arthritis and connective tissue disease I do. That us reason for the two antiinflammatory meds. Vitamins because Metformin destroys D & B’s. Also used to have major foot cramps. Now with blood thinner, likely reducing two clots under left knee, those are largely gone. I had so many tests and could hardly walk six houses away. Quit a job involving standing and have no idea why no one suggested ultrasound of legs. That wasn’t done until my ER visit, which found the blood clots. Don’t give up. Persist in getting the right diagnosis!