It May Seem Impossible, But You Can’t Give Up
I’m tired. I don’t want to do this anymore. I want the energy and the muscle tone that I once had. I wake up and, some days, I cannot reach behind me because the pain in my shoulders is so bad. I can hardly walk up the block, so I have stopped going and I have started wearing clothes that don’t require a bra (so no reaching behind).
Lupus has stolen my voice. I am often asked to repeat myself, and I literally squeak some days, so I don’t go out into many social situations anymore. I live in a place where there are tons of tourists. Sometimes they come, love it, and become residents, but more often than not, two or three months and they are gone. I made friends with people who are now gone back to a different life and I have made no effort to replace them.
Recently, I was talking to my sister. She is working to lose weight. She said she was on the treadmill and when it got hard, she just wanted to quit. She shared that she then thought of me fighting for my life to the point of moving to an entirely different country for healthcare, and it motivated her to keep going. I almost felt ashamed. I shared with her that I have, in a manner, given up.
Since our conversation, I have once again started stretching, I took my camera for a walk the other day (albeit a short walk, but I was out), and I went to a party over the weekend. I have shared before that I am a former fitness competitor and people would look at my body and ask, how much time do you dedicate to this? The answer was 24 hours. Lupus is the same way except there is no offseason for it. It is tiring. It beats you up in so many ways. There are days when I think, “I have a disease that kills, I really wish it would just do it already.” Then I talk to people who are on the outside of my battle looking in and what they are seeing and what I am feeling don’t mesh. But what they are seeing and sharing is making me want to keep fighting.
Staying in and not meeting new people is a form of giving up. I have decided that this is the easy way out, and I have rarely ever taken the easy way out of anything. I have now added a stretching routine to my morning, I am adding more meditation, and I’m looking for someone who is super patient to teach me to swim because I have no range of motion, no endurance, no energy, no muscle tone, and no idea how to tackle all of this. But I’m ready to admit I was giving up, but also ready to admit that I simply cannot. If you are at a point of wanting just to sit down, fight it. I’m exhausted just thinking about the new battle ahead but I have to remember I am here for a reason and I am grateful … just tired.
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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.
Liliana
I thought that I was the only one thinking so ... Conversation is needed .... But it's not easy.
Kellie McRae
One of the great joys of writing this column is I have learned and I hope you will too, that no matter what we are going through or what we are feeling, we are never alone. It really helps to know that others are feeling what you are feeling, thinking the same thoughts because then you know you have a place to go to release that tension that feeling alone brings. I hope when you feel that way that you will come on back over here and share. It is not easy talking about any part of this crazy battle we endure but know that here at Lupus News Today, there are a bunch of us feeling a lot of the same feelings that you are.
MELANIE
SO TRUE, I JUST WISH FAMILY, FRIENDS AND COWORKERS ALL UNDERSTOOD.
Lupie & Loopie
This article came in at a perfect parallel with my and my Lupus. "Loopie" (I named my greatest frenemie.) and I still hate each other and we use each other up! (Grin.) Your article reminded me of how easy it is to sit down and NOT fight it. I immediately begin convincing myself that it's okay when at the same time I realize it is not. Living with Loopie for 10 years this April and I have learned so much about myself. Especially that I am not a quitter. That could get in the way as well, though. When I'm having a no-need-for-energy-speed streak, I can't help to over do it. For example, I was off of work for almost three years. And, yes, waiting on me to NOT get approved for ASK, that I finally decided to work. Having three kids and needing funds to stay alive (for my meds) as become an essence in our lives. Since Oct, 2017, I began a Bilingual Paraprofessional job at our local district. I absolutely LOVE my job! I was offered extra hours to translate for Spanish speaking families around Nov and I did great. Conferences came up again this past week and my voice was completely GONE on Thursday morning. I sounded like a chipmunk with a flu virus! I'm still home today recuperating with my voice. What a bummer.. For my wallet, that is. Lol!! I gotta say though, this was the first time that I was able to take care of myself with the help of my love, Adrian, of course. Meanwhile, the kids, I have 3 preteens, are all in school, I am sharing this moment and hope to continue sharing more so I don't spend time coming up with conclusions such as that moment when you're FULLY exhausted and your brain is just trying to keep you going, “I have a disease that kills, I really wish it would just do it already.” Lupus Warriors are some of the truest fighters because in reality Lupus needs to just kill itself!
Kellie McRae
I hope your voice recovers, I often squeak. I tease about it in my many videos, it is just something I have come to accept. I am happy to hear that you have found fulfilling work that you can do and truly enjoy, I think sometimes that initial time off gives us a bit more clarity. I am going through something like that now. I am glad that you have something to look forward to, I think having a sense of purpose also helps stave off those feelings of the disease kills and I wish it would. We are truly fighters and some days though, are tougher than others but we have those small moments of insanity and then we shake it off and put on those boxing gloves and go at it again. All the best and I hope to see more of you around here :-)
Lupie & Loopie
There is a TY-PO on my recent post. ASK was suppose to say SIS. Sorry everyone!
Lupie & Loopie
Wow. Am I not loyal to the meaning of my name right now, SSI. Not ASK, not SIS, the social security supplement. That's what I meant. I'm hoping the person approving could just fix my first one then erase these..
Emelyn Falcon
Your article has really helped me. Just wanted to say thank you.
Kellie McRae
You are very welcome, I hope you will come back again.
Joyce
I'm hospitalized with my 2nd form of meningitis, but my fight will continue. Giving up isn't an option because I have daughters and granddaughters that I want to be here for and when I leave it's going to be on God's terms not mine, much love and togetherness always to all my warriors out there.
22-year lupus warrior "Elf Jazzy Joyce"