Posted this on my Facebook Page Nahleen.com and thought it was perfect for a Blog post for today. What came out wasn’t really intended which is why I think it’s worth the Blog post. It hit a personal spot I didn’t know existed. I love it when that happens!
SO HERE IT IS:
“Today is quote day I guess:, “Truly the light is sweet, and a pleasant thing it is for the eyes to behold the sun.”–Ecclesiastes—this feels really touches my heart because I absolutely love the light and really became friends with the sun especially when I was diagnosed with MS 10 years ago…we were best friends. Yet I always wondered why I felt weird in it and I couldn’t place it. I just thought it must be the MS…yet it was the sun that helped keep me sane. I truly believe that. The more I was outside, the more fresh air I got, the better I felt mentally. I wasn’t nearly as claustrophobic. But then I found out I had Lupus 2.5 years ago and EVERYTHING changed. I had to get out of the sun. I had to get away from it. Turns out it was really harming me too and that’s why I felt “weird”. I really grieved the LOSS of my contact with the sun especially that first year after my lupus diagnosis…it really did make me feel worse, especially because my body was so flared up and inflamed…now I wear sunscreen every day, hats as much as I can handle in the sun, sun protective clothing and it really helps…but it still bothers me. Turns out my relationship with the sun had to change and will probably never be the same again and that’s great for my physical health and a lot of my mental health because there is relief when my body is in darkness and I don’t have to mentally fight so hard to deal BUT IT IS SO HARD TO FULLY LET IT GO. So I take it one day at a time. And when I can get time with the sun I take it…even in small increments because I can’t cut it out totally…it is a part of who I am…guess it really teaches me how to deal with any relationship…”
Thank you all for being here. You’re really helping me figure out who I am!
Nahleen.com: On the Inside Looking Out 
I didn’t know you couldn’t get sun when you have lupus. Thanks for taking us on a journey with you and the sun. I never have heard anyone talk about the sun like that. But it is true. It is part of us. Thanks for sharing.
Hi Shelley!
Thanks so much for reading my Blog! So good to see you on here. And thanks so much for Commenting. Yeah, the sun and lupus don’t get along at all. The sun sensitivity (or photosensitivity) can cause rashes, can feel like it’s sucking the life out of me, can make me feel even hotter (which then sets my MS off because MS and heat can’t stand each other), can make me feel itchy in general, can cause a lot of fatigue, can bother my eyes with light sensitivity, can make me feel nauseous and can pretty much make any symptom I’ve been having flare up even more. It’s very frustrating since we need our sun to survive just like plants do and we need our Vitamin D and as I posted in the Blog, it helps me feel at peace at times…And you’re very welcome for taking you all on my journey. It is a journey isn’t it? All this health stuff? Yeah, I’ve felt very much a part of the sun for awhile but then now with lupus it’s hard not to be repelled by it. On Saturday I was out in the crazy hot intense sun for 5 minutes in Burbank and it absolutely sucked the life out of me. That’s all it took and I was wearing a hat, a sun protective jacket, pants, and sunscreen to try to block it and it didn’t matter. It can be very frustrating…but I’m learning new tricks all the time to try to combat it.
Anyway, so glad to hear from you!
take care,
Nahleen
I am lost, found out on monday that i have Lupus. My life and my family revolve around outdoor activities. Camping, swimming, going to the beach every summer for 3 weeks. I love to kayak. Were buying a house by the lake becuase we enjoy the water so much now what? I don’t know how to tell my family that i won’t be able to do the things that I was able to do before.
Hi Tina,
So nice to see you on here. Thank you for reading my Blog. I am very sorry to hear that you were recently diagnosed with lupus. Hearing something like that is so surreal and yet hits like a tidal wave. Try to take it one day at a time…one hour at a time….one moment at a time….one breath at a time. I do that as much as I can and it’s the only way to get through it sometimes.
If you want to email and converse further please let me know. You can click on the link on the “About Me” page and it will lead you to my email address.
Take care of yourself. It will all fall into place. And take a deep breath. You’ve been through a lot.
thinking of you,
Nahleen