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709d
What were some of the biggest lifestyle changes you made after your diagnosis?
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Lethargy
Systemic Lupus Erythematosus (SLE)
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703d
Having a good support system is key and educating your circle about your condition. The most important thing Ive learned is give myself grace
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Had to give up my social life
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for socializing i have to pick and choose the activities that mean the most to me to do; prioritizing what house chores or tasks actually need to be done vs things that can wait. prioritizing joy—engaging in activities that make me happy or bring me rest. adapting to my new body and learning to be kind to it, listening to my body when it needs to decompress, rest, or move. asking for help or finding a support system that i can reach out to for either practical needs (help running errands) or emotional needs (loved one to cry to or laugh with).
Cutting down a lot on activity and making sure I pace myself on work, also cutting back on socializing. Right now trying to eat a healthier diet :/ it’s hard when prepping food requires a lot of energy
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@DanDan I end up getting takeout delivery a lot because I’m so tired but that food is not the best to be eating with the condition 😭
@DanDan it’s so hard to pace myself at work. I feel like I either go to hard and burn out or too slow and feel guilty. And my social life I feel like I just lost entirely because working is my first priority. I’m lucky my friends are really understanding but it’s really hard
@SMX I feel the exact same way! I’ve worked a super stressful finance job for 5 years and since my diagnosis/I ended up being hospitalized before getting diagnosed, I’m constantly paranoid about worsening the disease with work stress. But I pretty much do the same, go hard and then exhausted all weekend or get sick during the week and have to take a day off.
With lupus? There were the life style changes I wanted to make and then those I initially made, some of which came from grieving and knowing that even though what was going on was manageable it wasn’t going away. I got really depressed for a while. But when I was ready I started TRYING to be active again which had gotten really hard for me a while before getting diagnosed. Adding ginger and turmeric to my diet and cutting out most processed foods. I couldn’t make a sweeping diet change.
@SMX how has the getting active again been? I used to workout 4x a week and would go running/spin class regularly. After I got sick I had to be on bed rest for a bit and since then just walking a mile tires me out 😭 I want to be able to run/bike again but it feels impossible.
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@Feebs oh gosh it’s so tricky and every week/day is different. I definitely can’t run. I do spin classes sometimes and just have to be like kind to myself that my body can’t do usually what it used to- but also if I feel good one day I might want to do it again the next and sometimes that can push me over the edge and make it hard for me to work for like 3 days. I really like anti gravity yoga cause it’s not a lot of pressure and it decompresses a lot of joints and gets into areas and massages some places where I hold a lot of pain, and I get endorphins from being upside down or flipping around. It’s gentle on the body. The last few weeks have been rough for me so that’s all I’ve done the last couple weeks. I was someone who used to run or spin and sometimes combine with yoga almost everyday. It was my coping mechanism and I just love the rush
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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