I love the sun. I have spent years loving the feel of sunshine on my face and basking in the wonderfulness of Spring and Summer. The sun has also become my worst enemy since my Lupus diagnosis. 12 years of facing off against an enemy that was once my closest friend and yet the pain of loss cuts just as deep with the coming of the seasons.
I yearn for the days of bare shoulders and soaking up the rays. Now what little bit of skin the sun touches turns into a burning ache of betrayal. The sun was once my friend but it now offers only torment and pain. The soothing balm of being out and about has now become a cumbersome reality of aches and pains in my life.
I often wonder if the pain is worse because I remember the pre-diagnosis days so well. Hours spent on the beautiful sand of the Jersey shore, walking the boards afterwards and just enjoying freedom in the sun. Now I can not be out for more than an hour without exhaustion setting in from the sun beating on me. My once bare shoulders are now completely covered by a lightweight hoodie and even then those rays sneak in on me. SPF used to be a low number but now I have learned that sunscreen comes in an SPF 100 which still doesn’t fix my battle with my old friend.
The sun has robbed me of joy. When it shows it’s bright face I lose time with my family. I lose energy and spur of the moment plans. I can’t venture out without an arsenal of sun-blocking weapons. My baseball cap, my hoodie, my over the top sunblock, pain relief tablets and of course the all important sunglasses to protect my weakening eyes from the glare of sunlight. I catch myself feeling jealous of tan-lines and mommas that can spend hours on end enjoying the freedoms that I once did. I live in the shadows and under cover now so I can spend more time in remission and less time in flares. I sacrifice an old friendship so I can have more time with those that I love. This disease limits me in so many ways, but this loss of sunshine is one I feel the most as the seasons change. If I let my guard down even for a moment my body attacks itself. It starts as an innocent looking rash that rapidly turns into a throbbing blob of redness and pain. My body often reacts by just shutting down completely and I often think that walking through wet cement would be more enjoyable. Lupus has already taken so much from me that I refuse to give it any more of my life.
My diagnosis has forced me to give up a good friend but it has also allowed me to gain the knowledge of perseverance. With my arsenal and family by my side I have learned to accept that the sun and I will never be friends again. Will I always miss it, most definitely but I have also found new things to love. I have discovered that hiking on a tree lined trail allows me outside time under the protection of shade. Amusement parks come to life at nighttime under the glowing lights of the midway and with enough rest during the day I can take full advantage of the shorter lines now that the sun has gone down. With little tweaks into what was once a normal life, I can find joy in the evenings and I have found a new friend in the moon.
I hope that you all can find your “moons” and see that while a diagnosis may change your life it can also help you to find joy in once overlooked areas.
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