2,522. I’ve been in pain every day for 2,522 days. 6 years, 10 months, 27 days. Every year when school starts I think back to my life almost 7 years ago, and how excited I was to start high school. Little did I know I would only attend school for a month before needing emergency surgery. 6 surgeries for that problem and 3 years later, I was diagnosed with fibromyalgia and spondylolisthesis. My seventh surgery was a year and four months ago. My pain has gotten so much worse since then. My surgeons told me that I am cleared to do anything I want to do. That they’ve done this surgery on athletes who go back to playing football. Why does it hurt me to shower? Why does it hurt me to even wear jeans? I know I post a lot about my pain, but imagine being in pain every day for 2,522 days. I know there’s lots of people who have lived with this longer, but I just wish I could have at least gotten sick later in life. I don’t feel 21. Sometimes I feel way older, and other times I feel younger because I haven’t went to college and I can’t drive. These things were taken from me because of my illnesses and surgeries. This isn’t a pity post. I don’t need pity, I need understanding. The chronic illness and chronic pain community need understanding. I, a 21 year old, who looks healthy, had to go get a handicap placard because it hurts to walk into stores, shop, and come back out. I shouldn’t have to be terrified that someone will scream at me for having it. If you read this far, thank you. I know y’all are the ones who are there for me every day.
I’ve been sharing my personal struggles on my Facebook a lot lately. They’ve been getting updates before y’all, and I feel horrible. Lol. This post is something I shared on my Facebook Monday morning, the day after Mother’s Day.
I had such a good day yesterday for Mother’s Day. I hadn’t been in horrible pain for a few days, and I’ve only been taking ibuprofen. I love how I tell people that, and then a few hours later the pain comes back with a vengeance. I literally only showered, sat while I had my makeup done for me, and went to the Indian restaurant yesterday. That’s what put me into pain. I’ve been up all night. I fell asleep for maybe 5-10 minutes during a movie last night, but have been wide awake since. My sugar dropped to 70 in the middle of the night and I’ve been feeling sick ever since. I already drank something to bring it up so I should feel normal now. I’m so tired of living my life doing the bare minimum each day so I can save my energy for when I do have plans, only to make my pain worse again. So now I’ll be in bed until I’m feeling better. Who knows when that will be. Also want to say if my posts about my chronic pain/illnesses annoy you, I apologize, but I’m not going to stop sharing. I feel like I should share what’s happening and how my life is because I have held it in for so long.
I know I’m an hour late, but I shared this on my Facebook earlier. I thought I would also share it in a blog post.
Today is fibromyalgia awareness day. I was diagnosed with fibromyalgia when I was 17. Trauma is what usually brings it on, so it was most likely a result from my 6 surgeries. But I think I’ve had it my whole life. Most people remember me being absent from school a lot as a kid, and people would joke about it. I have always felt sick and just “weird”, I always napped after school. I just thought it was normal. It’s not. I’m convinced I’ve had fibromyalgia my whole life, but my doctors just ignored the symptoms and said I was lazy or had growing pains. Living with an invisible chronic illness is not fun. Everyone should think before they speak and teach your children to not bully other kids who miss school or have health problems.
When you have chronic pain, there is many triggers that will cause pain or put you into a flare. I was in a flare for about 2 weeks, and it was horrible. I never say my pain is at a 10, but it was very, very close to 10. I could not understand what I had done to make my pain so bad. Yes, I’ve been going out more for book club gatherings or having dinner with friends, but I didn’t think it was enough to trigger a flare. Then finally it dawned on me, I had shaved my legs for the first time in over a year. My sister is an esthetician, so I had bought a wax pot before my spine surgery and stocked up on wax when they had sales. She hadn’t waxed me in 3 months though, so I looked like an animal. I had to give in and shave because I had a date. Well, that’s what triggered my pain. Before surgery, my legs would shake and I would also go into a flare but I was hoping it wouldn’t happen. I was wrong. That was one of the worst flares I’d had in a long time. I’m finally in less pain, and trying not to take pain meds. I’m really trying to get off of them, or only take them when my pain is 8+. Trying to figure out what causes flares is one of the hardest parts about chronic pain/illness. You try to avoid those activities like the plague, but sometimes it’s impossible. What are your flares?
I posted about my winery visit Thursday. Since then, I’ve had an eventful weekend. Friday night, a few friends and I decided to go to a new bar/club. I barely drank, and certainly didn’t dance too much because it wasn’t very hype. Lol. But I was hurting before I even went out Friday night. My sister and I had went grocery shopping and cooked dinner before. So my back pain had started during the cooking dinner part and just got worse from there. We actually left the club around 1:30 and got home before 3 AM. (That’s very good for us). Saturday, I got to sleep in but we had planned on a few friends coming over and us making Mexican food for cinco de mayo. I didn’t help cook, I didn’t even change out of my Pj’s. I’m so glad my friends don’t judge! I just sat at the table in chairs for too long so that made my pain worse too. I was woken up last night by pain around 4 AM. I finally fell back asleep around 6, and slept basically all day. I will definitely crash for days after doing multiple things days in a row. Well tonight, my cousin called us and was at the hospital and we thought she was going to have her baby 2 months early. 😮 They were able to stop it, but we were there for hours and I’m sure y’all know how uncomfortable that is for us chronically ill people. We got home from the hospital at around 1 AM and I fell asleep shortly after. Well, I got woken up by pain again tonight at 4 AM again. I hate this!! I don’t understand why we have to suffer from doing fun things. Why can’t I be a normal 21 year old??? The pain is so bad. I would rip my spine and legs off if I could.
This morning my pain was awful and I had to take a pain pill, and sleep. I slept until about 1-2 PM.
I joined a book club at the beginning of the year and we have get togethers frequently. We had a trip to a winery planned for tonight so I rested up before. I got all dolled up, dressed cute and put makeup on. I tried some wine and ate some appetizers that were amazing. My favorite wine was the peach. I’m the youngest in the group, but multiple people struggle with chronic illness or mental illness. It’s very nice to have a group of ladies that you can talk about anything with. It has really gotten me out of my House way more than I usually do.
I just wanted to post something about a good day. A good day still involves pain, but sometimes you can push past it and enjoy it. Tomorrow night I am going out for a night with my friends and drinking a little so here’s to hoping I feel good after that! I’ll keep y’all updated! Xoxo.
Anxiety is such a debilitating disorder/illness. A lot of people think you can just turn it off, or just “stop stressing” but that’s not how anxiety works. When you have anxiety, it is with you 24 hours, 7 days a week. It never leaves. It follows you with everything you do. One of the biggest triggers for my anxiety right now is dating/thinking about relationships. Whether it’s friendships or a relationship with a significant other. With my friendships, I always question everything I do. Do I say something weird? Do I bother them by texting them too much? Am I not supportive enough? It’s every little thing. I sit and think of things we have talked about and if they think I’m weird or lazy. It’s just as bad with guys. I’ve never been in a relationship or dated anyone, so I think my anxiety is extra bad because of that. I never think I’m good enough for anyone. I’m not skinny. I can’t go out a lot. My idea of fun is cuddling up and watching tv. I feel like I run off every guy I talk to when I tell them about my chronic illnesses. They just don’t want to deal with someone like me. I feel like I complain to everyone too much. I just hope and pray that one day I will find my perfect guy who will love me despite my problems. This has been on my mind a lot lately. Being alone sucks, and I’m so tired of it. I want someone to cuddle up with and them make me feel better. I just want someone to love me.