I loved the sun and the sun loved me. We had a beautiful relationship all my life. Living in Cape Town there were innumerable visits to the beach. There is nothing like a good swim or just marinating in the sea or a pool. I loved tanning. Getting that golden, olive skin was fabulous for summer. We had so many amazing memories together. We loved each other but it was not meant to be. I got diagnosed with Lupus and Lupus hates the sun! Reality set in… I researched it extensively and it basically came down to this…
Lupus also added heat intolerance. I would have hot flushes like I had menopause! Funny that… I was given menopause meds to help with the hot flushes. Yes. Menopause meds. Who cares as long as it does it’s job.
I also developed photosensitivity. My eyes hurt terribly in strong light and going outside leaves me blind for a little while, while I adjust. I really never took this seriously at first. The sun? Yeah it’s ok. I’ll be ok. So we go on holiday as a family and of course aunty duties call. This includes playing outside with my nieces and nephew and little brother. I just thought I’ll take my chances I mean really how bad can it be right?
Well did I pay for that! Also learned the lesson the hard way. I always seem to be doing that! I developed a lupus flare. My joints hurt so badly. Especially my wrists and ankles. The pain was excruciating. I decided to go to a Mediclinic. The doctor wanted to put me on a course of steroids. Hell no! My rheumatologist does it only via IV. So I told her that razon shots might work because it is for inflammation. My rheumatologist equipped me with the knowledge I needed for when I travel. So for the next 6 days I had to go in everyday to get an injection that finally reduced the flare. So this sun thing was real after all!
So now I really need to pay attention to this. Lupus flares can be triggered by the sun. It can cause joint pain, weakness, fatigue and even internal organ damage which could end up being fatal. Bloody hell. So I had to become a vampire. I think I would be Wesley Snipes type vampire rather than the sparkly Twilight series one. Another life modification.
You can’t stop life. You have to make choices. I pick and choose the things I do knowing there will be a price to pay but hoping the price wont be too high.
Side Note: I love Paul’s homemade ice cream! They had birthday cake flavour. My fave! So I told hubs that to celebrate the move into our new place we should get some. I knowingly and willingly indulged knowing full well that I can’t have dairy and that is going to cause me pain. That night I ended up in the most excrutiating pain. I just comforted myself by thinking how great that birthday cake ice-cream tasted. So yes, choices. Sometimes you just have to live! Yeah I won’t be touching ice-cream for a long, loooong time!
Protecting yourself
- So I now needed to make changes. I have to make sure I baste myself with sunscreen like a Christmas turkey and keep basting.
- Avoid the sun during its peak hours 10am to 4 pm.
- Cover up. It’s hard when it’s hot but I try my best to cover up as much as I can without looking like a weirdo. I’m dreaming of a collection for this. We Lupies can cover up and still feel comfortable and look cute!
- Avoid artificial light like e.g office lights that emit UV rays. As crazy as it sounds exposure to artificial light can bring on a Lupus flare
- Take Vitamin D. We get alot of it from the sun. I take it because my vitamin D levels are low from lack of sunlight.
Heat intolerance
I didn’t know this was a thing. A real thing. In summer I would overheat so badly. On one particularly hot day I remember getting dressed for work and by the time I was done I was dizzy and nauseous. I ended up fainting. This happened on too many occasions with me blacking out / fainting. I had to start doing things in stages. Shower, rest. Do hair, rest. Do make-up, rest. This was the best way I could figure out dealing with the heat intolerance when getting ready for work or any occasion that required me to not look like a pajama gang vagrant.
I have had to find a way to deal with it because with high temps comes the nausea, light headedness and fainting. I have to listen to my body. When I feel it coming on I need to find a place to sit immediately. Sometimes even the shop floor. I have zero shame at such times! Also I can feel myself blacking out and I don’t want to end up sprawled out on a shop floor unconscious. Not a cute look. Ever. Damsel in distress is not my jam.
I have no shame because I know that overheating is a killer for me. Not only that but heatstroke can lead to serious life threatening complications. Like I need anymore health complications! I also learned that over heating and humidity brings on fibromyalgia flares! Like come on already, give a girl a bloody break!
Well in true Tracey form I will take on this challenge! Of course you know I’m gonna go the dramatic route. So if you see someone all in black, with the widest brimmed sun hat and massive sunglasses … That will be me! Also no offence and some people might find it offensive but I’m doing white face. Like black face, except it will be my basting (sunscreen) that inevitably leaves you super white. Sorry not sorry! It’s for medical reasons, not to act the fool!
So my dear readers in the southern hemisphere, who are now experiencing summer, whether you have Lupus or not take care of yourselves in the sun. When you are catching a tan, remember me looking rather grey. No more glowing olive skin more like Wednesday from the Adams Family. Bronzer has become my best friend!
I told my rheumatologist that my bucket list was to visit as many islands as I could. I asked about Bali etc. His response was “If you can find a time when its not hot or humid then perhaps we can discuss it” Basically, no. Forget that bucket list because it ain’t gonna happen! Damn you Lupus! You funsnatcher!!!
Enjoy summer! Stay protected. Watch out for heatstroke. Love every ray of sun that you are basking in for some us this, this could be dangerous even fatal.
ONE LOVE!
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