I freakin’ love summer. Little dresses, drinks on a patio, hanging in the park with friends, going on adventures and really taking advantage of every hour you have with this benevolent side of Mother Nature. Summer means staying outdoors for hours on end, getting a sun kissed look on your skin, laughing and being more active than usual. Hooray for summer!

But then lupus happens. Okay, not to everyone. Hopefully not many of you can relate to this. But those of us with lupus, and lots of other autoimmune diseases, start to see the sun as our worst enemy. To most people the sun is kind of like Phoebe – super awesome and fun to be around. But to us, the sun is a total Ross. For someone with lupus, the most important thing in the summer is to do everything in your power to pretend it isn’t summer and to ensure you do not bask in its glory. With lupus comes great photosensitivity, so its kind of like being allergic to the sun. The sun can cause rashes, migraines, fatigue (or as I like to call it – crushing fatigue), and it can even trigger a more serious flare up.

You know the song “Steal my Sunshine” by Len? Of course you do. Well, that’s how I feel about lupus right now. It’s getting all warm and nice out and all of my friends are raving about endless summer fun and I’m sitting in my room being all like “ho hum, lupus is going to ruin my summer.” Even the lyrics in the first part of the song are pretty fitting.

I was lying on the grass on Sunday morning of last week | Indulging in my self defeat
My mind was thugged all laced and bugged all twisted wrong and beat | A comfortable three feet deep
Now the fuzzy stare from not being there on a confusing morning week | Impaired my tribal lunar speak
And of course you can’t become if you only say what you would have done | So I missed a million miles of fun

I know it’s up for me | If you steal my sunshine
Making sure I’m not in too deep | If you steal my sunshine
Keeping versed and on my feet | If you steal my sunshine

Is it just me or is Len perfectly describing what it feels like to have the fatigue brought on by a lupus flare up? Why else would you just lay in the grass with your mind all twisted wrong and beat? Unable to speak or think properly? Of course you missed a million miles of fun, Len! Because lupus! Anyway, I’m pretty sure that’s what this song is about. And lupus is stealing the shit out of my sunshine lately.

So listening to Len has brought me here. To write a post about how to cope with summer shenanigans and the raging hot sun when you have a shitty auto immune disease that wants you to take no part in those summer shenanigans.

THESE TIPS SHOULD HELP YOU TO NOT DIE BECAUSE OF SUMMER: 

1. Wear  SPF 75645 Sunscreen. I am exaggerating the SPF number so don’t print this off and go ask a cashier at Shoppers Drug Mart why they don’t carry it. But you need to wear SO much sunscreen that it will get ridiculous. I recommend buying a nice face sunscreen for sensitive skin, because chances are if you have lupus or another autoimmune disorder, you need all the help you can get in that area. I wear Neutrogena Clear Face SPF 60. As for the rest of my body, I usually wear that baby sunscreen with the highest SPF possible. I figure babies are even bigger divas than people with lupus, so whatever crap they put on their delicate skin should be good enough for me.

2. Wear giant sunglasses. I have a pair of prescription sunglasses that are pretty large and a total statement piece. That statement is usually “don’t approach me, I’m a raging bitch.” They make me look super unfriendly and stuck up, but they keep that sun out of my eyes and help reduce the amount of migraines I get. I can be pretty lame and even wear my sunglasses indoors sometimes when there are strong fluorescent lights overhead, or sun streaming in through a window. But that’s just what I have to do to stay out of the hospital so I’ve stopped caring that people think I look silly.

3. Cover up your skin with layers. I know that’s the last thing anyone wants to hear when there is a heat wave happening outside, but it’s very important to protect your skin from the sun’s harmful UV rays as much as possible when outdoors. When I found out how much the sun can impact my disease, I used that as an excuse to go on a fun little shopping spree with my bestie Clare so we could pick out some fashionable, yet functional summer pieces. (Didn’t that sound like I actually know how to blog about fashion!?) I picked up a few sun hats, a light-weight but funky scarf, some adorable maxi dresses and several long sleeved sweaters that are totally breathable. I came to the conclusion that the best way to dress for summer with lupus is to channel Mary Kate Olsen during a cold front. If you aren’t dressed like this you’re doing something wrong:

mary-kate-olsen-fedora-03

4. Try not to stay out in the sun for too long. I know this one is a no-brainer, but there are certain times during the day that are safer for you to be out frolicking around in the park. The sun is at it’s strongest between 10am to 4pm. And that really sucks because those are prime frolicking hours. But try your best to work around that. If you like taking daily walks (which is another great way to keep healthy, obviously) try doing them earlier in the morning or in the evening. If you’re at the beach or a park do what you can to stay in the shade during those hours. Set up your blanket under a giant tree instead of smack in the middle of an open field. Your friends may prefer to bask in the sun, but hopefully if you tell them why it’s so dangerous for you they will happily oblige (and then someday thank you for protecting them from skin cancer).

5. Stay active and involved! One of the hardest things about having a chronic illness like lupus is the feeling that you’re missing out on all the fun. And that can be especially noticeable in the summer because of our UV limitations. But it’s very important to try your best to participate in any activities that aren’t too demanding. It’s great for your joints and muscles if you stay active, and it’s great for your mental and emotional health too. My friends like to hike and camp a lot, and as much as I would love to partake in those outings with them, I know it isn’t a reasonable expectation for my body. But we are finding other activities that I can be involved in so I don’t always have to miss out. Swimming is a great summer activity to do with friends, as well as non-rigorous walks, but my new favourite has to be Bocce Ball. If you haven’t heard of it, it’s essentially a fun twist on lawn bowling. It’s super easy but my friends and I enjoy it every time we play.

Bocce Ball Grass

Don’t be afraid to open up a line of communication with your friends and family about how summer will impact your disease. If you tell them how you feel about wanting to participate in the fun, it will be much easier for them to find ways to keep you involved. And sometimes they will be great at reminding you that you’ve been out in the sun too long when you get super careless and completely forget you have lupus and want to stay outside for 12 hours straight.

6. Move to Newfoundland, Canada. I live in St. John’s, Newfoundland, and apparently that’s a perfect place to live if you have lupus or problems being out in the sun. Last week (in July, just in case you forget which month it is) it was recorded to be colder here than the North Pole. Rod Stewart came to town the other day for an outdoor concert and everyone showed up in winter coats. Mid July. Today it’s pissing down rain. So if you’re afraid that the sun will really ruin your life because of lupus then you should probably just move here. We hardly ever see it. Thanks, Global Warming!

Having any sort of auto immune disease is hard. Adding “avoid sun at all costs” to a list of your problems is really hard. But you have to take this seriously because the sun can royally screw up your body. Solar flares (as my friend Jonny loves to call them) can lead to serious medical complications, and nobody wants that! So do your best to protect yourself from those pesky UV rays and stay as healthy as possible! Luckily for us the layered, bohemian look is totally in style now.

If you have more tips on how to survive those hot summer days with lupus or any similar autoimmune diseases please share in the comments below!

 

 

4 Comments on How to Not Die in the Summer: A Lupus Survival Guide

  1. Caroline
    July 13, 2015 at 11:57 am (4 years ago)

    I think you need to find a rocking cool parasol as well.

    Reply
  2. Ellie
    July 13, 2015 at 4:15 pm (4 years ago)

    I love this entry, although I was diagnosed with fibromyalgia and not lupus, I read through this and thought, this is basically me (again leads me to question what the lupus markers I was told I have means). I just had the annoyance of a rash on my feet, hands, arms and legs which only eased when the sunshine stopped for a week :(. But anyhow, I hope you manage to avoid the sun enough to have a lovely summer :).

    Reply
  3. Lynn Hammond
    July 17, 2015 at 9:08 pm (4 years ago)

    I buy the baby sunscreen too… With the exact same reasoning.

    Reply
  4. Jojo
    May 10, 2016 at 3:49 pm (3 years ago)

    It’s coming up to summer again and I’ve just found your post here. I go through phases of finding summer really tough because of the frustration I have feeling like I’m missing out on the summer fun and frolics. As if having lupus isn’t bad enough during the test of the year it ruins your appreciation of the joyous summer months. It really gets me pretty down and depressed when I can’t even feel excited for summer anymore

    Reply

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