Grieving me.
I have been finding it quite sad lately when I see memes about spontaneity or doing something stupid just for the fun of it or being the unpredictable fun friend. I miss that version of me. After being diagnosed with lupus a few months ago, I have had to take time and stop and listen to the small changes in my body to avoid getting sick or having a flare-up. I have given up so much that I have completely shut down my identity, I know who I am, but my health won't allow me the be her anymore.
I was the girl to run up the mountain, smell the roses, jump in the lake, get my hands dirty, do it all myself. I used to dance, play sports, hike, paint, read, create, build stuff, you name it. Now... I get lightheaded when I fold the laundry. I am so tired at the end of a work week that I sleep the whole weekend and still get up Monday exhausted. One remotely social Saterday and I am drained. I struggle to keep up with playing with my nephew because I get tired so easily. Dancing, ballet, its completely out of the picture, my body has been broken down to the point that I physically can do the thing I love most anymore.
Some symptoms realy scare me, my hands might go numb, twitch and drop things unexpectedly. My feet go blue and feel dead yet painful, some nights I can't breath for no reason, I get headaches and dizzy and pains in random places that scare me because I dont know why it is happening.
There is this long list of co-illnesses that just keep growing. Asthma, Raynaud's, tachycardia, IBS, eye issues, nervous system dysfunctions, mental issues, and so forth. It is just really draining and I miss the me before the lupus who could just live.
@LostNotFound404
😔
I'm so sorry, that this illness had taken so much away from you 💛
@LostNotFound404
I'm sorry to hear you've lost a lot of energy.. i'm actually proud of your ***.. Your still working, that's very wonderful.. alot of us would just throw in the towel but your still trying.. bless your heart💚🌲
@LostNotFound404
Reading this honestly made my heart hurt for you. 💗 It sounds like you’re not just dealing with the physical symptoms of lupus, but also grieving the version of yourself who could move through life without constantly having to think about what your body might do next.
I can hear how much you miss being spontaneous and adventurous running up a mountain, jumping in a lake, dancing, creating, getting your hands dirty, and simply doing things without having to calculate the cost afterward. And I think it makes complete sense that seeing memes about that carefree version of life would hit differently now. It can be painful to watch people celebrate something that used to feel so natural to you.
What really stood out to me is when you said, “I know who I am, but my health won’t allow me to be her anymore.” That sounds like such a difficult place to sit in. You haven’t stopped being that person. She’s still there. But your body has put limits around how much of her you’re able to express right now, and I imagine that can feel incredibly unfair.
You’ve had to become so aware of your body and its warning signs, when all you probably want is to forget about your body for a while and just live. Having to constantly stop, monitor symptoms, pace yourself, and worry about flares sounds exhausting in a way that people who haven’t experienced it might not fully understand.
And it makes sense that you’re scared sometimes, too. When your body starts doing things you don’t recognize numbness, twitching, dropping things, changes in your feet, dizziness, headaches, breathing difficulties it can be really frightening to not know what’s happening or what might come next.
I also hope you’re being gentle with yourself about the things you can’t do right now. Sleeping through the weekend doesn’t make you lazy. Getting exhausted after socializing doesn’t make you boring. Struggling to keep up with your nephew doesn’t make you a bad aunt. Your body is asking for things from you that it never had to ask for before.
You’re allowed to miss your old life. You’re allowed to be angry about what has changed. You’re allowed to grieve it without having to immediately find a positive side to everything. And you’re allowed to still want that adventurous, creative, spontaneous version of yourself back.
Maybe she isn’t gone. Maybe right now she just needs you to meet her where your body is able to go. 🤍
This breaks my heart. I can relate on a smaller scale. I used to climb mountains, mountain bike, ski. Then parenting teens, a career change, and perimenopause kicked in and I hardly recognize myself. I miss the girl who went camping last minute and danced in the rain.
I don’t know if this message helps or hurts. For what it is worth, I see your very valid pain and grief. Sending hugs.