There’s no doubt, I’ve been feeling beyond physically crummy and with that, I’ve been emotionally drained. I don’t know how many other countries celebrate Valentine’s Day on February 14th, but we celebrated it in the United States today.
I have readers globally, so I’ll say I can’t explain the exact origin of Valentine’s Day (that’s what Google is for), but in the United States, it’s a day to be with the person you love. People give flowers, candy, romantic dinners, while many in the single world feel less than and less loved, because we aren’t in a relationship with our perfect mate.
Despite being single for most of 11+ years, Valentine’s Day has always been a favorite holiday for me. I have no expectations. I use it as a time to usually tell others in my life how much I love and care about them. People still in my life today definitely deserve a lot of love from me! Not because I’m a nasty person, but I am living a strange life for a 43 year old woman. I am chronically ill with an uncertain future and my day to day knowledge of how I’ll feel is a big mystery.
I woke up this morning with a terrible headache that has been plaguing me for a couple months that my neurologist diagnosed as meningitis. My strong legs from stem cells are dragging on the ground again and waking up where I was enjoying walking, my body fell over this morning. I was told the steroid infusions would kill the stem cells (or some of them), but I guess I wasn’t totally prepared to lose my new grace despite falling over twice yesterday. My wheelchair and I are becoming buddies again. Kind of a bummer. Kind of grateful I have it.
Regardless, I didn’t feel like saying “I love you” to anyone. I was bitter, angry, and generally scared and upset. Then I got a text message from someone I met about 3 years ago that said, “happy Valentine’s Day”. It was a nice surprise. I was happy to hear from her.
Then I could shoot off my super “woe is me” message to my very sick buddy in Florida as she seems to hold the exact amount of space I need for all my worries, mundanes, and victories. I enjoy (ok love and cling to) the stories about her world too.
At 9:30, I had a phone meeting with a woman who knows a lot about my genetic neuromuscular wasting disease. She put a couple pieces of the puzzle for me together, but she validated the 20+ years of terrible medical neglect I’ve dealt with. Validating it doesn’t fix it, but just for someone to feel sorry that you have been searching for neurological answers to be told you’re crazy was refreshing. (None of my medical professionals are calling me crazy now, it’s just been mysterious).
So my day continued with lots of physical pain knowing I had so much to do. One of the things the lady said to me about muscle wasting diseases is that to keep moving, you have to keep moving.
My head feels like an atomic bomb went off inside, but when she told me stories of people getting really sick or having surgeries where they couldn’t move for periods of time and ended up losing their movement, I knew today I had to push myself to stretch.
So it might have been 5 minutes of 2 stretches or even maybe just 3 minutes, but I keep getting called tenacious. Tenacious people turn their atomic bomb head upside down to stretch even though it felt terrible, but my legs remembered. My legs were happy.
A handful more messages came in to tell me how people loved me in different ways. It wasn’t “you’re so strong” or the stuff that often makes me feel misunderstood in what I’m dealing with. They were sincere messages of how I affect them or what they feel my purpose is.
I know my life of chronic illness is misunderstood as it’s an impossible thing to explain to anyone who isn’t living it. I’ve grieved a lot of people falling by the wayside as it doesn’t make sense to them, and we live in a society, the US at least, where dropping by is basically considered rude. People are also just busy. I know it’s confusing to understand how to help someone who never gets well.
Today I appreciated that I didn’t have to work to tell everyone how much I loved them on my favorite holiday. I appreciated that tiny snippets of love in various forms came my direction.
Despite spending the day alone and ending it with my head on an ice pack, I showed great love for myself by attempting to move again and allowing others to fill me up instead of trying to do the opposite.
Thanks friends. And if your Valentine’s Day was spent alone, I can’t say I’m sorry as life is a big old bundle of challenges, sometimes all at once. I do hope you get shown some love, even if it’s a smile from a random stranger.
Lots of love on a day that, for me is about love for everyone even when you wake up angry, bitter, and falling over, yet still,
(The top picture is a valentine a friend made me and sent a picture)