Today, I had to take steroids. For the third time this week I ended up walking around the house using my wedding cane. It was terrible but the steroids helped and I’m keeping my legs elevated.
Another thing about today and the other days of the week I’ve used a mobility aid, whether I’ve left the house or not, I’ve done a full hair and makeup getup, and worn a pretty dress. Yesterday I tried the Pinterest listerine pedicure, which exfoliated my feet but turned them blue, and painted my nails red. I’ll probably stick to Korean feet masks.
Every time I make myself pretty, I take a selfie because of all the extra effort that went into it, especially if it was on a bad day. I am proud of the work it took to doll myself up, whether it’s a pedicure, skincare, an outfit, my hair, my makeup, or a mix.
Going back to being a child, I have found strength in my femininity. Many people denounce selfies as vain, but after my illness, it’s simply me saying, “hey, I did it!”
I’m not looking for attention or accolades. Just the fact that I did it for myself and have something to look back on is enough to help me fight my battle against chronic illness.
When it comes to planning your Spoonie wedding, it’s all about the dress. If you suffer from chronic pain from a chronic illness, the dress will be a big factor in how your wedding day will go. This is because it dictates your comfort level. There are easy ways to figure this out without wasting spoons trying on tons of dresses, which will drain your energy.
Tips for figuring out which dresses totry on
1. Consider a non bridal dress that happens to be white.
These will have less layers and will be less heavy, and also less expensive. I try to be budget friendly on this blog because I know with medical expenses everything else can get in the way. Prioritize your health.
2. Look for a dress with only two or three layers.
Wedding dresses are like cakes. Some have more fabric layers than most. Some have up to 12, and this makes the dress heavy. The heavier the dress, the more uncomfortable you will feel as it places pressure on your body, causing pain and exhaustion.
3. Consider the fabric. The softer and lighter it is, the better.
Jersey knit, lace and satin are favorites. Make sure you bring a flash light to test if the fabric is see through!
4. If your weight fluctuates, consider a corset top.
The dress I landed on was a soft lace up all the way with a ribbon. That meant that no matter how my body changed, the dress could be altered through tightening or loosening the corset lacing.
I originally bought the first dress pictured, and it was zip up all the way which ended up hurting me in the end.
Where should you buy a dress?
My dress was not bought at a traditional bridal shop, so I suggest getting creative with your search. Personal favorites are:
1. Secondhand bridal shops
This way, you can buy couture for less, and get it off the rack the same day.
2. Quinceanera shops
This is where I found my dress. You can find excellent customer service and a different style of dress if you don’t like current bridal fashion, like I do.
3. Department stores
These are good places to find dresses with less layers. The dresses will be simpler and more low key, and a simpler dress is usually a more comfortable dress.
Good department stores are:
I had a bad experience at David’s Bridal with my body fluctuations. I do not recommend them.
How to shop
1. Do NOT shop online.
2. Only go to one store per day.
3. When you dress shop, make it your one goal for the day.
Try to wear as little shapewear and other undergarments as possible. This means no complicated slips or spandex. You’re going to need to pee at some point. These items are also restrictive and uncomfortable. I did wear a soft, expensive strapless bra and soft spandex shorts on my wedding day. I made sure my undergarments were soft and necessary. If it’s your wedding day and you think you look good without your spandex, skip it. I was still comfortable in mine because of the type I wore.
My dress was satin and silk. It didn’t have structured hard boning in the corset. This meant the corset was soft, which was good for my costocondritis. The dress had an empire waist, so there was no pressure on my abdomen, which is a constant painful spot for me. It had crystal sparkle detail on the bodice, and a simple three layer skirt. It was not heavy at all and twirled!
You can still have a princess dress and comfort. Just know what to look for, and don’t give up on the dress of your dreams!
It’s almost a month left until my wonderful, creekside spoonie wedding, and I’m left with some thoughts.
Communication is hard. Love is hard. It can be scary. Love is a literal battlefield, but as long as you and your partner are on the same team fighting for each other, it’s worth it.
To take someone as they are every day is a blessing and a challenge. My fiancé has Aspergers and cannot smile on command, as seen in the photos. He can smile in real life. When these photos were taken a few months ago, he was coming down with shingles and feeling sick.
He tried his best to smile. The next day when the shingles appeared I drove him to the doctor despite my own illness showing up and not being able to drive very well. But I cherish these precious photos – the colors, the lights, the way we accidentally matched.
I ordered my engagement photos dress from Chic Wish, which I was initially afraid was a scam. But the dress came in, and it fit! It was the most unique thing I had ever seen, and matched my fiancé’s seersucker and khaki ensemble. Plus it made me feel beautiful.
It can be hard to feel beautiful in my new body. I looked through my old photos of selfies over the years and I looked at my model days. I look sicker than I do now – face all hollowed out, giant under eye bags.
And with that, a recap:
Pocket full of starlight: loving yourself and someone else is worth it though not mutually exclusive.
Pocket full of darkness: all the things they tell you about love aren’t really true. The truth you find comes for your own self.