UV rays are the enemy of lupus, Sjogren's and yep, even Migraine patients. So what does a person do when going to the land of the midnight sun for a cruise vacation? Cover up.
Really cover up.
One of the things I miss the most is swimming. I swam competitively from the age of seven until I was 17. I was actually pretty good too :) I own an in-ground swimming pool we haven't even opened up for the year since around 2005. I look outdoors at the diving board and slide and yearn for the days when we would swim as a family nearly every night, friends and neighbors right along with us.
For this trip, I decided I was going swimming, no matter the cost. Well, so long as I could do it without causing an autoimmune flare. So, I bought a wetsuit.
I began looking right after Christmas. After several weeks of looking, I had an idea what I thought I needed - a triathlon suit. These suits are made of thin material in varying thicknesses depending where the suit is on your body. The thicker the suit, the warmer the suit. To make it flexible so you can actually move those arms to swim and expand your chest to breathe, there are panels that have very thin material. The suits cover you from neck to ankles and wrists - well most of them do anyway.
Because I needed something to keep my core warm (I do NOT hold my body temps well and suffer fairly serious Raynaud's) and to keep 100% of the UV light out, I chose the full body version. Coated with a rubber-type coating, it was the only thing I could find that would completely protect me from the sun and fluorescent lights sure to be present on the boat.
Despite the suit, my head, neck, hands and feet will be exposed to whatever light is present. This will likely limit the hours I can swim to late at night when the sun is at its lowest. I'm okay with that. Maybe that will keep me from scaring the kids sure to also be present on the boat, lol.
To cover my head, I've decided on a do-rag. Purple of course :) I can't stand the feeling of a hat on my head because the allodynia from the 24/7 Migraines makes me so sensitive that washing my hair hurts. I do have a cap I'll be bringing just in case there is a certain amount of time I can stand wearing it, but will save it for our excursions - whatever those will end up being.
Sunscreen is a must, but for a person who is allergic to most sunscreens, this is a challenge. I have used a particular brand in the past, but it is not waterproof. The only sure way to keep the sun from damaging my fragile cells and triggering a mass immune response, is to be covered. This means zinc oxide. I have the option of gloves and socks too, but I'm going to try to avoid using them if I can.
Add my bug-eyed sunglasses, and I am sure to be quite a site for people to stare at. On one hand I don't know these people, and it really doesn't bother me. On the other hand, I also know that it will bother me.
Each time I have to make a concession to do something most people consider normal... each time I see a family member or friend roll their eyes at me... each time I look in the mirror... I realize that I really am sick and it is harder to *not feel* the differences. Oh, and those eyes that look at me when I have to be dressed in a get-up like this. Ugh.
Once I figured out the type of wetsuit I needed, the search was on for the exact make and model. Who knew there were hundreds of these things out there to choose from - and each of them different!
I wanted the expertise of professionals, which I got. I wanted someone to just guide me and tell me "Buy this one, it's the right one for you" but didn't get that until May.
Great! Now I finally know which one to get and I go to order it, only to find they have none in my size. I pray that the backorders will come through and I'll be able to get my perfect wetsuit (which also happens to have purple accents!)
No matter where I looked and how long I waited, I had no luck with the suit of my dreams. So I began the search all over again.
Eventually I found a pro that told me he knew just what I needed. When we looked at it, it too was sold out.
So he showed me another. It wasn't sold out, but was an additional $150 more than I'd allotted to spend and it was a thinner suit.
When I placed my order, it too was sold out.
What the heck?!
I didn't have time to Migraine, get ready for a trip AND start over from scratch for a third time. So I began looking very deep for the last suit and was amazed to finally find one.
Once again, I placed my order. I emailed the company and thought they answered none of my other questions, they were in California, so I hoped ovenight shipping would work. I wrote them again and told them so long as I had it by Saturday I thought I'd be okay, as that would give me sufficient time to return it for another size if needed.
Friday at about 4:15pm I receive a call telling me they goofed and didn't have my size. So, they wanted to upgrade me to a thinner, better suit.
But I don't want thinner, I want thicker!
I tried to look it up online, and found virtually nothing, probably because it's a newer model.
Faced with an impossible Migraine and an impossible decision that needed to be made within the hour, I agreed to the upgrade and called her back. Great! They can still get it to me by Saturday because I've paid for overnight shipping.
A few minutes later, another phone call. *Oops* they can't get it to me overnight because we don't have anyone to deliver overnight packages.
Are you kidding? Sadly, no.
I asked them to pro-rate my shipping back to 3 day since it would be Monday before it arrived, but they couldn't.
I wanted to pull my hair out and vomit all over the phone just for good measure. This just shouldn't be so blaming hard.
"Yes, please send me the suit, just so long as it arrives by Monday. That won't give me any time to get another size if this is wrong or won't work for me, and my trip will be ruined, but oh well."
So, on Monday my wetsuit is finally to arrive. It's my third choice, cost me an additional $150, isn't but half as warm as the original, but at least it's getting here!
Stay tuned for more of the wetsuit saga, lol.
The Making of a Self Care Manifesto Part 2
1 hour ago