Have I Given Up? The Search for Joy in My Battle
I don’t make resolutions. It seems that now they have been replaced with mantras and buzzwords. However, my daughter asked me on New Year’s Day if I had something that could give me life guidance this year. I told her that instead of constantly trying to find ways to monetize my efforts and work all the time, I wanted to find things that I enjoyed. And if those activities bring me money, then great.
As I looked into the things I thought would bring me joy, I felt as if I’d chosen them because they would not overly challenge my body. I’ve seen little corners of the world and still have some countries left to visit and have stamped on my passport. But the thought of packing and traveling to new places makes me feel apprehensive and exhausted.
Traveling to new places is another level of stress. While I want to go, part of me thinks I should stay put. I’ve shared that I’m teaching myself to sew. The more bags I make, the more people are asking to buy them. I started offering these bags, not just as a potential source of income but because they bring others joy. And let’s face it, what am I going to do with a giant pile of purses?
Somedays, I am too exhausted to sew, so I spend time on my computer, figuring out how to add to my online business and increase my income. Instead of doing this, I decided to teach myself a new skill that I can do from bed. I gathered together my initial supplies but once again felt as if I was giving up.
I think that I will enjoy learning how to make purse bling — I chose this activity to accompany my bag-making, but also because I could do it in bed. For a person who, in the past, spent a lot of time on the go, making choices around what I can do from my bed feels as if I have accepted that’s where I’m destined to be.
It’s frustrating to think that lupus has led to my preferring to be alone in my bed, engaged in activities that allow me to stay inside. I feel as if I’ve given up. Then I remind myself that on the days I can go out, I do.
I don’t know how much traveling I will accomplish this year, but I plan to find joy in the things I create, the people I spend time with, and in the many days that I will be fortunate to have. Some days I feel as if I’ve given up; at other times, I realize that my continual search for joy and efforts to bring happiness to others are merely different ways of battling.
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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
Stacie
Wow, this hit home. I have no goals or desires, I constantly would let myself or others down. And that hurts me, I have always been the one to be the rock. I feel useless, stagnant, and lost. I used to be involved in everything, school, sports, government, church,jobs, you name it, I was a volunteer firefighter, boy/girl scout leader, class mom, ect. now... I barely can get my kids to school on time
Kellie McRae
Hi Stacie, I wish I could give you a magic solution that would get us both back up to speed. Its hard knowing what was while looking at what is. I have really just started with small successes. I honestly celebrate the days I can take a shower without having to stop and lean on the wall :-) Sounds silly but that's my marathon mile marker some mornings. Be kind to yourself, you didn't ask for it and you are doing the best you can, give yourself credit for that. Sending you good vibes, stay strong.
Ann
Stacie & Kellie,
Yes to both of your comments.
I used to be the “Get it done girl”
It’s hard to plan because your body just lets you down at any moment it feels like it. It gets depressing as a single mom of a 14 year old. I think I’m 52,,,, is this it? I have so much more I want to do. But who after my son leaves home is going to want to be with me?
I just finally was able to start the Lupus medication Benlysta this weekend. Extremely expensive but I got financial assistance to help pay. Praying over the next few months the fatigue dissipates and I will get some life back!
❤️ Hugs to all!
Ann
Kellie McRae
Hi Ann, You mention who will want to be with you? I have just decided I will be single because I very much feel that same way. I hope the Benlysta works for you. So much of what we deal with is quite costly to both our spirits and our wallets. I just do my best to stay grateful for what I have and some days that's tough but I want to encourage you to keep looking for things that bring you some joy. We have to adjust...and adjust again but I think if we really look, we can find something worthy. Sending you good vibes and truly hoping the new meds will provide some relief.
Jacquie Paldin
I can do relate to all these comments from other Lupus patients...I feel like their describing me & we all feel the same exhaustion & pain & of course so many other symptoms depending on the day,week, or month~but no one other than a Lupus patient knows how we feel...so it’s so good to read & hear from someone who understands & Lupus is just (1) of my Auto Immune Diseases~
Kellie McRae
Hi Jacquie, One thing I have learned through this is it's good to learn that you are not alone. I often tell people that I never knew the importance of a support group until I needed one. It's one thing for people to try to sympathize with what we deal with but have no experience versus speaking with someone who can actually relate and speak from experience. I wish they didn't hurt but appreciate that they know what I am dealing with. I wish you low pain and high energy. Thanks for commenting.
Gaile Valcho
Hi Kellie,
I just love your columns..They really resonate with me- I'm fairly new to this Lupus Dx..February 2020. I can relate to all of you guys.. I ran marathons and was a fitness instructor at 3 gyms, in addition to the PTA volunteering, wife, mom of a 12 year old boy, well you get the picture. Now, some days the furthest I can go is my sofa. I don't recognize myself any longer. I just hole up in my house and then I feel like I am becoming some sort of eccentric recluse. It's just too difficult to be in the outside world. I get sad. Sad for life I had, which was pretty great. Running was huge part of it. I miss it so much. Friends drop by, but they're all from my running club, which makes it bittersweet to see them. I usually just cry. I hope with all of the medications and injections, 2021 finds us in a better place.
Kellie McRae
Hi Gaile, I wish I could lighten your load, I'd love to say just the right words but to even try I think would just be disrespectful. It's not easy having the rug pulled from underneath your entire life. This is the part that I think most don't understand, you didn't suffer a job loss and that was it or a financial loss, when your body is on the warpath, it affects every aspect of your life and mentally that hits hard. I almost always want to insert humor (its how I cope so I hope you won't be offended) BUT thanks to 2020, I think we are all becoming eccentric recluses :-) I have so many friends that have covid anxiety and are not leaving their homes and strangely since it's hard for me to leave, knowing they are tucked away and not out having fun that I can't gives me a weird little slice of peace. Shhh, don' tell them, that's probably really selfish of me. I do hope you can find some things to help you get through this. Sending you comforting vibes.